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7-30-10
Last day of chemo. Morgan is tired this morning, but feeling good otherwise. We are hoping to have a relaxing weekend with some very dear friends and watch our kids play and enjoy themselves.
Thank you for the messages and cards, we are doing ok and very thankful for the path we have been given. We could have done without the cancer part but we are very fortunate that Morgan is healthy enough to have radiation and that we could start with low dose chemo and hopefully knock this spot out.
Hope everyone has a great weekend!

7-28-10
Today was the Talent Show in the pediatric day hospital at Sloan and we were blown away by the amazing talent of the patients, siblings and staff! We saw dance routines, singing, guitar and piano playing and hula-hooping. Ally wrote and performed her own song and also gave a dance performance to a Taylor Swift song! She did such a great job, we are so proud of her! Morgan started to write a song to perform, but wasn't ready to sing this morning so she decided to wait until next year.
We met with Dr Wolden today. Morgan will have rt simulation tomorrow morning and hopefully get started with rt next week. The therapy they are using is sort of like proton (sp?) therapy in that the radiation is directed only so far and won't go past the bone. We are hoping this will do the trick. We are expecting to complete radiation and then another round of ireno/temo before coming back for scans the first week of September.
Thanks for keeping up with us, I'll post more tomorrow!

7-27-10
So far so good with the chemo. Morgan gets a 24 hour dose of zofran (anti-nausea med) and then a 45 minute infusion of irenotecan (chemo). She also takes a temodar pill (chemo) and then we are done for the day.
On Sunday, Morgan started to have some stomach pain that got progressively worse through last night. The team was concerned about the possibilty of appendicitis, but her pain was inconsistent, so we kept a close eye on her last night. She did have pain, but was eating (a lot) and still moving around. I made her get up and run/jump every twenty minutes or so to assess her pain; it wasn't bad enough to bring her in and she slept soundly through the night. We will continue to watch her but go ahead with the chemo and hope she continues to tolerate it well.
Our meeting with Dr Wolden (rt oncologist) is Wednesday morning. Clint and I are hoping we can at least get the set up done this week so we can start rt on Monday.
Thank you for keeping our family in your thoughts and prayers. Thanks to all who helped us get a (running) vehicle and in such a hurry.

7-26-10
Morgan has had her medi-port accessed and labs drawn, she is playing a board game with her friends and volunteers. She still has to see the team and get started with her chemo. I'm not sure when we will meet with Dr Wolden (radiation oncologist) to start the rt process, but we'll find out today what the plan is. Hopefully. We had a nice trip up and settled in last night. Ally and Morgan had some fun with their friends Ashlynn and Megan. Kelly is a hair stylist who volunteers her time once a month and gives free haircuts to those of us staying at the RMH. Last night, Kelly brought some semi-permanant hair color in blue, red, pink and purple and all the girls had a blast coloring their hair. Yes, I let Ally color her hair pink, red, purple and blue! It's only hair, it's still summer, and they deserve to have a little fun with it! Morgan has a blue headband of color on top and some pink peek-a-boos underneath. They look so cute, I'll post a picture soon.
Please visit our friend Megan's caringbridge and offer words of support to her family. Megan's father, Mark passed away at the Ronald McDonald House on Friday. He was an amazing father and very passionate about saving our kids. He always had a compliment for Ally and Morgan and was a good friend to our family. www.caringbridge.org/visit/meganprzekurat

7-23-10
Very quick update: we have some good news! Dr Modak called this morning. The CT scan was negative again but the MRI did show subtle changes--now the doctors have a place to pinpoint the radiation. This news has caused them to step back from the harsh approach of high dose chemo. Morgan will start low dose chemo (irenotican/temodar) on Monday and we will meet with the radiation oncologist to get started on radiating this nb in her skull. This low dose chemo is easier to tolerate and she probably won't lose her hair!!! I'll explain more in a later post--we are getting ready by unpacking/repacking for a probable long stay (3-4 weeks) in the city. Thanks for all the thoughts/prayers :)

7-22-10
The final report is not back from the MRI or the CT scan. Dr Modak says he cannot see anything but will await final report before making final decision. What we do know is that it is neuroblastoma and Morgan will need to start chemo on Monday. It will most likely be high dose cyclo-topo-vin and will bottom out her counts, cause hair loss and she will get a fever requiring us to be inpatient until her counts recover.
Ally and Morgan know all of this and they are really doing well with the news. Morgan is upset that she will lose the hair she has waiting so long for, but those thoughts aren't consuming her. She is running around the playroom in the PDH having a blast at the karaoke party.
Thanks to everyone for all your thoughts and prayers. And thank you to everyone for all your help these last few weeks. We are consindering this a minor set back. We have teams in NYC and FL ready to build Morgan up and keep her as healthy and as strong as possible over the next few months and we will get back on schedule for preventative treatment once she is clear again.
It's time to get back to RMH, check out and go to the airport. I'll post again tomorrow with more news.

7-21-10
While we wait for MRI to call us back, I wanted to give a quick update. Morgan continues to feel really good. She and Ally have been chasing eachother up and down the halls today, playing tag and laughing those sweet laughs we love to hear.
Clint and I are so consumed with this "kicked in the gut" feeling. It is comforting to know that we have two great hospitals ready and willing to treat Morgan. We are looking at this as a setback. We don't know for sure what the plan is, we are waiting on the mri results and our meeting with Dr Modak in the morning. Speaking of Dr Modak, we saw him in the cafeteria and I snuck a quick pic of him with Morgan.........

Our Jeep quit working while we were up here so we are flying home and worrying about it later. Thank you Brennan family for taking such good care of us and our travel needs! We appreciate you!

Thank you for the guestbook messages, they are a source of comfort for us in this trying time. I will update tomorrow after our meeting.

7-20-10
Wow. I have never had scan results given so quickly. And I never want them that quick again. We finished the MIBG scan, came up to the ninth floor, got some cereal for Morgan and I was called back to room 6. The spot on Morgan's skull is still lighting up on MIBG. It isn't any bigger and there aren't any more, but the one spot is still there. I appreciate (more than words can say) the entire neuroblastoma team and especially Dr Modak for their care and compassion in giving me this awful news and helping me make decisions.

Tonight is the big meeting with all the NB docs. They will discuss Morgan's case and hopefully come up with an either/or plan dependant on results of tomorrow's scans. Morgan will have a ct of the head and orbits and an mri tomorrow. Dr Modak will let me know Thursday morning what the results are from those scans and also what our plan is. We will most likely meet with Dr Wolden (radiation oncologist) here at Sloan on Thursday to firm up a plan for radiation. We will then go home on Thursday and start high dose chemo on Monday.

I am beyond words to describe how I feel.

Morgan is enjoying her friends in the playroom. She feels good, looks good, and is just so, so happy.
I will update on Thursday when we have more information.

7-19-10
The Pierce family made it NYC. The Jeep ran really well until we got to Delaware, there was a slight problem with a kinked hose, but Clint fixed that, so we made it to the city.
We are in room #806 at the Ronald McDonald house. This morning, we took Ally and Morgan to the American girls store. They are both very good with saving money from birthdays and Christmas. Ally bought herself an American Girl puppy and Morgan bought a matching pajama set for herself. She can't wait to wear it tonight!
The playroom at Sloan is busy this Monday afternoon. Morgan has her port accessed and labs have been drawn. She will see the team for a check up and then we will go down to Nuclear Medicine for the MIBG injection. After that we will take the girls back to the Ronald McDonald house so they can spend a few hours at Camp Ronald McDonald in the downstairs playroom.
Tomorrow morning is the MIBG scan and I hope to meet with Dr Modak as soon as he gets the preliminary results (tomorrow). Thank you for your prayers and well wishes.....keep them coming!
I will post more info tomorrow after our meeting.

7-17-10
We are on our way to NYC. It has been a long week, but we are hoping to have a nice weekend while taking our time driving up north.
Morgan started with a sore throat Tuesday night, the same night the transmission went out in my Jeep! We took Morgan and Ally to the doctor Wednesday and both girls were dx with strep throat--yuck!!! My Jeep went to the doctor, too, and many, many thanks (too many to write in this post) go to Ryan and Kyle Brennan for helping us out and getting my Jeep in perfect running condition for the trip up to the city. We owe you guys!!!
Ally and Morgan are on the mend and since we're so close, of course I could not escape the sneaky grasp of the strep throat monster-I was dx on Thursday after a very long morning spent in bed, feeling very much like I had the flu.
All these little issues stacked up to make it seem like a bad week, but this is the kind of stuff the term "normal" is made of. It could be so much worse........and we know how much worse......makes it all very real and really not worth complaining over (although I do my fair share of complaining :)
The plan is still to have MIBG injection on Monday, then MIBG scan on Tuesday. We are hoping and praying and holding our breath and crossing our fingers....for clear MIBG scan.
I'll update more from the city.

7-8-10
After several phone calls to and from Sloan today, we have a plan. It's not what I was hoping (surprise, surprise) but it is a plan. Morgan will have an MIBG injection on July 19th then scan the next day (Tuesday). If the spot on her skull is still showing up on the MIBG scan we will follow up with another MRI and CT. We are pushing 3F8 back a week (if the scans are clear) but this is what they feel is best so Clint and I are in agreement.
At least we get another week at home!
We are relieved at the positive results we have received so far and also stressed beyond belief; just under the radar of course, so Ally and Morgan can enjoy their hometime in as normal a setting as possible. There is just nothing Clint or I can do but wait for time to pass by. I know you're not supposed to wish the days away, but gosh I wish I could see inside Morgan's head to know what's going on!
I wish I had a crystal ball.
So that's the news. As I said, I'm happy to have another week at home and trying desperetly not to think of what is to come.
Morgan still feels great, she is wearing herself out on summer activities daily, and although I told her there was a spot on her scan and we aren't sure what it is, we don't talk much about what is to come. She knows we are going back to NYC in a week and a half for repeat scans. I think once I tell her our travel plans, she files it away in the back of her mind and goes on with life just happy and having as much fun as she can. We adults could learn a lot from this seven year old ;)
Please take a moment to check on our friend Aisy. She received very good news today and we know she deserves it so much. She and Clint share a special bond and we love that little girl (as with some of our other NB friends) like she is our own. www.caringbridge.org/visit/aisylinbledsoe

7-5-10
CT scan is negative!!!! Ronnie just called from Dr Modak's office to let me know the ct scan is negative. I don't know what the official plan is yet, The NB docs have their meeting on Tuesday where they discuss all patients and form a plan. I am hoping with all my heart and soul that they will have us come back next week to rescan, then start cycle#13 of 3F8 on July 19th. I hesitate to assume this is the plan because, well, I always have an idea in my head of what will happen next and I am usually way off the mark. I think at this point it is safe to say that we don't know for sure what the spot was lighting up on her MIBG scan and we have to wait for bone marrow biopsies and urine markers to come back. Again, Morgan is feeling great and we are so, so happy for this great news!
Thank you so much for all the prayers and well wishes. Our nerves are shot after three and a half days of waiting. It is hard to function with such a huge "what if" hanging over our heads. This is the dynamic we live in , though, and as NB goes, we'll take the good news! It could be better, but it also could be worse. That is the mantra Clint and I (as well as every other cancer family) live with everyday.
Please continue to pray for Morgan to remain clear of NB in her marrow and for her urine markers to stay down in the normal range.
Please also pray for the Maziarz family. They brought their daughter Lauren home yesterday with no other treatment options. They are asking for privacy during this difficult time, but any good thoughts or wishes can be sent to her caringbridge www.caringbridge.org/visit/lsm .

7-3
Quick update: we are home. The MRI is negative so we will not start chemo on Monday, but Dr Modak doesn't want to leave any stone unturned so Morgan had an emergency ct scan of the head and orbits last night at 6:30. We won't have the results until a radiologist reads the scan and writes a report which of course won't be until Tuesday. If CT scan is negative we will rescan in two weeks. If not, we enter the dreaded life again next week.
Morgan is fine. She feels great, looks great and when I told her there might be a spot of NB on her head (skull) she asked a couple of questions and went back to reading her book.
This is a weekend to enjoy our home and having both of our girls here together.
Thank you, thank you, thank you for the outpouring of love, prayers, good thoughts and messages. We really gain strength from all the well wishes. Also, thank you to the friends who helped me out last night, bringing a pump for my flat stroller tire, bringing my bags from the RMH to the hospital so we could leave straight from there to the airport, and for helping me get out of the city on such a tight schedule. I am so lucky to have met so many caring people from many parts of the world that I can call friends.
I will update as I get more information.

7-2
I've been staring at this computer screen for the last hour, trying to figure out how to say that the 'carefree, fun at home life' as we know it has ended. After Morgan's MIBG scan today, Dr Modak asked to see me. That is never a good sign. Busy doctors spend the bulk of their time with sick patients. They only smile and give a thumbs up to those of us who are NED(no evidence of disease). No thumbs up today, just an urgent look and "I'll meet with you in 30 mintues". There is a spot on Morgan's skull lighting up on her MIBG scan. We are waiting on the final report to come back on the MRI to confirm. If, by a miracle we are lucky and the MRI is negative, we will go home for two weeks and come back then to rescan. If not, we will most likely start chemo on Tuesday. She will have two rounds of chemo with radiation to the site in between cycles. We will do the radiation here at Sloan, but the chemo we will try to do at All Children's. I feel like I'm typing about someone else's life, although I wouldn't wish any of this on my worst enemy (if I had one). I haven't told Morgan yet, I think she will do ok with the news until she realizes how long inpatient stays will be after. The chemo she will get will cause the dreaded neutropenic fever, so we will be on high alert to keep hands washed, no swimming in the pool, and minimal visitors. That will be one of the hardest parts for her. No visitors, no pool and losing her hair again. I just don't know what else to say. The grief I feel for my daughter and what trials are to come for her is impossible to explain. Please, please pray for a miracle. For the MRI to come back negative and for this to be nothing. She is so happy and full of life right now. She is the picture of health. Receiving this news today was so much harder than the first time. For starters, I feel so badly for Dr Modak. He is such a compassionate doctor and I know he is just as devasted as we are. It is also difficult to know what the days that lay ahead for us contain and how extremly difficult this will be.
We need your support more than ever, thank you for keeping up with us and sending us good thoughts and prayers.

6-30-10
Tomorrow Morgan and I will fly to NYC for a quick two day trip which will include a visit with the oncologist (hopefully Dr Modak), CT scan, MRI, echo, MIBG injection, MIBG scan and four bone marrow biopsies. If all goes well we will be on a plane coming home Friday night.
We have had a busy and fun two weeks since I last posted. My brother, sister-in-law and niece were in town and Ally and Morgan got to spend some much needed time with their cousins. We have had many sleepovers and days in the sun, visiting with family and enjoying our time together.
Morgan continues to feel well, she has a lot of energy and stays constantly hungry. We took a trip to the pediatricians office last week to go over all treatments/specialists Morgan sees and make sure we are covering all aspects of her care. She still goes to a GI doctor monthly, weekly physical therapy, 3F8 every six weeks and a complete work-up of scans every three months. At this point, her pediatrician is her primary care doctor-it is surreal to finally be where we hoped and prayed for so long-as normal as possible with our girl living and loving life!
Sloan tested Morgan's immunization levels in her blood (chemo can wipe out resitance to any previous vaccinations). Luckily she still has resistance for most of the vaccinations she received as a baby before chemo. We are checking on two, to see if Dr Modak thinks she should be re-vaccinated, but it is all great news and we are so happy to be going through the motions with all of this.
Please pray for us as we make our way to and from NYC over the next two days. We are hoping and praying for continued clear scans. It has been wonderful to be home, actually wonderful is an understatement. I have no words to describe how lucky we feel to be home with both of our girls growing and happy! My anxiety level is all over the place, I have (as my fellow onc moms would say) SCANXIETY.....hoping, hoping, praying that life goes back to normal on Saturday.
Please check out our friend Kate's caringbridge ( www.caringbridge.org/visit/katemadigan ) We have known this family for over a year now. Kate and Morgan shared a room for 3F8 on more than one occasion, and Kate's older sister Tessa and Ally became fast friends in the playroom at Sloan. Kate is in between treatments because of liver issues and her Mom and Dad need good thoughts and prayers sent their way as they go through tough times.
Thanks for continuing to follow our journey!
6-20-20
Happy Summer! We are having a great time on summer break. I have been working almost every week day, so I apologize again for the lack of updates. Ally and Morgan have been keeping very busy playing with their friends at the preschool and spending some much needed time at home.
Morgan continues to feel good. She has a few aches and pains here and there but I'm hoping that it's from all the running around she's been doing. She is eating as much as we will let her and her energy level is great.
Morgan has scans July 1st and 2nd, please pray for things to go smoothly! I'll update again next week.

6-6-10
We are home! Everyone is so happy to be here. This will be a busy week for us. Clinton and I are back to work and Ally and Morgan have their last week of school! We are happy that summer is almost here and we are looking forward to making the most of it.
Morgan is feeling well and in good spirits. The doctors at MSKCC have decided that she can have six weeks at home between 3F8 treatments. It makes me a little nervous to go this long without the treatment that cleared Morgan of her cancer, but I know the doctors at Sloan are very dedicated to giving her the best care and they know this protocol better than anyone.
Morgan and I will fly to NYC at the end of June for her routine scans.
Our plan is to enjoy our time at home together!
Please check in on our friend Aisy, she is in the hospital in Orlando with no counts (neutropenia) and fighting some bowel issues that may require surgery. www.caringbridge.org/visit/aisylinbledsoe .We are very close with Aisy and her parents and ask that you keep them all in your prayers.

6-4-10
All clear to go! 3F8 was not as hard for Morgan today. She asked for the breathing treatement (unusual for her to want it) but it really helped her get through the pain with breathing. She didn't have much pain during the infusion, but had a few bursts of back pain during and after the flush. She required four dilaudid pain rescues again today. Also, she needed the extra benadryl and visteral for hives. She didn't hurt as bad as the rest of the week, though and we are grateful for that.
We are on our way home and can't wait to get there!
Thanks for the messages. Please keep all children fighting cancer in our prayers.
6-3-10

Morgan's treatment yesterday was uneventful, thank goodness. She slept for a long time back at the Ronald and woke up to eat a good dinner and play Monopoly.

Today was more of the same. She needed four dilaudid "pain rescues", a breathing treatment, and some benadryl for hives. Morgan has had more severe and longer lasting back pain this time, so the nurses are thinking she may need an increase in her dose amount. She gets only half the recommended dose each time she has a "rescue" of dilaudid. She was younger and much smaller when we started this protocol, so her body may benefit from a higher dose of pain medicine. It doesn't mean we have to use them, we'll just have the pain meds on hand if she needs them.

She is sitting up in bed now, back at the Ronald. We are watching Food Network, she just finished her lunch and we are going to start another game of Monopoly.

We are going to pack up tonight and leave tomorrow as soon as the doctors say Morgan is OK to travel. We all can't wait to get home!

6-2-10
We had a wonderful time at the MSKCC Pediatric Prom!! Ally and Morgan had a great time dancing and eating ice cream sundaes!We are just now starting her pre-meds for treatment so we will be here a few more hours. I will post later when we get back to RMH.

6-1-10
Cycle#12 Day #1 is complete. Morgan did a very good job managing her pain. The first day of the week is always hard. I don't think this is something you can really prepare for, even though she's done it so many times before. She had hitched breathing because she felt tightness in her chest. This happened last time along with the pain. I think she feels like she can't breathe but her oxygen levels have been great throughout the day and through the infusion. She did require a breathing treatment and three dilaudid pain "rescues". She is sleeping now. All of her stats (oxygen, heartrate, blood pressure) are all within the normal range. We are waiting for her to wake up so we can go back to RMH.
The big news of the day......Ally and Morgan have picked out their prom dresses!! Morgan's dress is pink with ruffles for the top and a silky, flowing, knee length skirt. Ally chose a dark purple ankle-length dress with a crinkle-fabric. They are so excited!! We are allowed to take Morgan to prom for a few hours tomorrow before she starts treatment. Last year during prom, she went to the prom for an hour before heading down to the donor room to collect stem cells. We are so happy that it worked out for us to be here and that Morgan has clear scans and one week of treatment a month. We are so lucky. I will update tomorrow with as many pictures as we can (sneak away from the camara police) and take!
Thanks for checking in!

5-31-10
New York City is beautiful today! The weather is fantastic, it's a shame we can't be out on one of the terraces at the RMH but they are in the process of remodeling--they should be nice when finished!
We arrived in NYC this morning. Ally and Morgan handled the drive up to the city really well. We broke up the drive time by going half way and then spending time at our friends house in South Carolina for a little R & R before getting back on the road.
Morgan is very happy to have only four days of 3F8 this week (because of the holiday) and she is in good spirits. We have already spent some time catching up with our friends here at the house. Currently, I have Ally, Morgan, Jensen and Jayden sprawled on the floor/couch watching Disney and playing a guessing game. Thank goodness for good friends in far away places!
We are having another group dinner tonight with a few families so it will be nice to catch up.
Tomorrow morning we will be at the hospital bright and early for Morgan to have her fingerstick and port access. I expect it will be like a typical first-day-of-the-week at Sloan and we will wait a while for pharmacy to send up the meds and antibody for us to get started.
In the morning, while we are waiting, Ally and Morgan will be busy looking for their prom dresses because the Pediatric prom at Sloan is on Wednesday! They are all VERY excited!!!
I will update more tomorrow- as always, thank you so much for the messages left in the guestbook for our Sparklyflower. She loves to read them!

5-27-10
Morgan is once again HAMA negative and will receive 3F8 next week. She will have only four days of treatment because of Memorial Day being a holiday and she is very happy about that!
Everything has been great since we've been home. She continues to go to school, and has lots of energy for play in the afternoons. We had the hearing evaluation and all is well with the hearing aids (we are working on getting her to wear them more often) but no significant changes in hearing loss were found so that is good. All of her other appointments went well and she has been feeling great! She had a qiuck trip to the pediatrician for an ear infection but that is being covered with antibiotics.
Although we have LOVED being home, we are looking forward to seeing our friends @ the RMH and the hospital in NYC.
Thank you for continuing to follow Morgan and her progress. We really love reading the guestbook messages and we are so grateful for your continued support!
Please remember Ylaria in your prayers as she continues treatment in Vermont, Jensen, Dakota, Aisy, Brooklyn, Chloe, Delaney, Sam, there are too many to name them all.
Also, please say a prayer for a very dear friend, (someone who very graciously helped guide me through my first steps into this insane world of pediatric oncology) Lori, as her son goes through more scans for a suspicious spot that showed up on a routine ct scan. www.caringbridge.org/visit/leonardo .

5-13-10

This picture is from last year, when a woman named Karen (Mom to a NB survivor) and a few others paddled the Colorado River through the Grand Canyon over two weeks time to raise money for neuroblastoma research. They called it Paddling for a Cure and they raised over $13,000.00!! Each day, the paddlers held a sign with names of NB warriors, survivors and angels. We were honored for Morgan to be named along this journey. All funds raised went to our wonderful doctors at MSKCC. We need to help them continue this very important research! Morgan is able to receive treatment because of this research and our doctors rely on individuals for financial support! So many more kids are beating this disease the first time around only to relapse. Stronger, more targeted treatments are needed to keep these kids from going into relapse after relapse. Neuroblastoma is an “orphan disease” and doesn’t pull much funding from the big organizations. We are our kids hope in funding a cure.

This year, “THE BATTLE CONTINUES and the PADDLERS ARE BACK! Please, please go to http://www.firstgiving.com/paddlingforacure2 and read about this year’s paddling adventure. If you choose to donate, you can write a note in the margin to designate your donation for Morgan or anyone you would like to honor with your donation. Thank you!

Update: it has been very difficult for me to finally get a post on this site. I am still trying to figure out how to post and why the problem started. Please bear with me.

Morgan is doing very well. She and Ally have spent most of their free time swimming in the pool and playing Barbies inside. School is going well, Morgan is in a play tomorrow night-- I can’t describe how happy I am that we are here, going to school, being a part of normal school functions, like field trips and lunch dates and school plays. Her physical therapy is going well, and she has a hearing evaluation on Wednesday. She has been very happy lately and with every smile and laugh our girls bring us so much joy! Morgan will have HAMA blood drawn on Thursday. If she is HAMA negative, cycle#12 will start on June 1^st.

One year ago this month, my family was living in New York City at the Ronald McDonald House. After the standard treatment didn’t clear Morgan of NB, we explored other treatments, unsure of whether or not she would ever be cancer free. At times, I wondered if we would ever get home; or if Morgan would ever get a break from chemo.

This year, as we try to navigate life between clear scans, we live life three weeks at a time. It’a not easy, but we are so blessed. I am so thankful that my family is able to be home, to live and love and be together. I know first-hand how lucky we are and wish all of our NB family could share these same joys. Every day, I count my blessings. Every day. And every day I pray that we will find a cure so no other families have to fight pediatric cancer.

I am still so humbled by the outpouring of love and support from our friends, family and community. Thank you Chris for the fundraiser in Helsinki! I’m sorry that it rained but we are so grateful to you and everyone who came out to support us!

Please consider supporting http://www.firstgiving.com/paddlingforacure2 or holding a bake sale for www.bandofparents.org . We still have Sparklyflower bracelets for a donation at http://helpmorgan.freehosting.net/index.html . Thank you for your support!

5-9-10
Happy Mother's Day!! We are home and everyone is happy to be sleeping in our own beds! It is late, so this update is short but please check back soon as there are MANY fundraising efforts going on in support of neuroblastoma and MSKCC! Also, check out the kid of the week--Sam Fleming

5-7-10
Finally! Our website is cooperating and I can give a REAL update!
We are finished with cycle#11 of 3F8. Mon-Tues-Wed were mild days with a few issues and lots of pain and hives. Thursday started with a mild version of "the 3F8 cough" and it is worse today. She was checked and double checked today- her lungs are clear and she most likely is trying to cough up mucus caused by allergies. She didn't feel very good last night with lots of foot pain and just a general yucky feeling. This afternoon she is eating lunch and watching Food Network from her bed at the Ronald.

We are off for three weeks and will return (if HAMA negative) on Memorial Day week for cycle#12. We are looking forward to getting back home and to school for the last few weeks before summer.

Tomorrow, we are walking in the Kids Walk for Kids with Cancer event in Central Park. This is a great fundraiser for our kids, all money raised goes to Dr Cheung's research at Sloan. Thank you so much to our Ohio friends and family who took up collections for "Team Morgan"!!We are so lucky to have your support in the fight against pediatric cancer! For more information about tomorrow's walk, go to http://www.kidswalkforkidswithcancer.org/
Our pictures page has a slide show from our walk last year.

The Cruise for Morgan in Helsinki, Finland is tonight. Chris, thanks for caring so much from so far away and holding this wonderful benefit for our Sparklyflower!

A rockabilly night for the Pierce family in Helsinki, Finland Friday May 7,
Cruise for Children's Cancer
The first cruise night in May in Helsinki.
Ravintolalaive Wäiski.
Bands include ,
The Greasers and more to be announced. http://www.myspace.com/thegreasersband
Plenty of Parking at Wäiski!!!!
http://www.waiski.com/

Thanks for continuing to check in on our Sparklyflower! Please check out the events forum for more infomation events to support more and other children fighting cancer.

4-28-10

It has been too long since my last update, I know. No news continues to be good news for us. We have jumped into home life as if we never left. Since the last update, Ally and Morgan have been to school every day. Morgan is doing very well keeping up with her friends in the classroom. She is very proud of herself for running one whole lap around the track in PE! She is still going to physical therapy once a week and she really likes it. During therapy, she has fun while she stretches the muscles in her legs and practices balance. This has made a huge difference in her ability to keep up with her friends during playtime. Morgan’s GI doctor says that she has IBS (irritable bowel syndrome) and that is why her tummy troubles are reoccurring. We have started to better control the portion sizes and frequency of meals to help give her some relief. This is working for now, and she doesn’t have much pain associated with it, so we won’t add anything to her current treatment schedule for this new diagnosis. We are still waiting on a hearing evaluation appointment, so that will have to happen when we get back. Speaking of when we get back, Morgan is HAMA negative, which means we will return to NYC this weekend for another week (cycle#11) of 3F8. Tonight, we have started the dreaded shots in preparation of treatment, but we are going to do as much fun stuff as possible before we go!

Ally is doing very well. She is playing softball and absolutely loving it! Her team is so supportive of our crazy schedule of frequent trips to NYC so we have taken full advantage of this fun time together. Ally had a birthday last week; she is 9 years old now. Clinton and I can’t believe how quickly she is growing and what a beautiful young girl she is becoming! Thanks to everyone for the wonderful birthday messages on her special day.

My work held a fundraiser for Relay for Life and Morgan’s trust fund. The school, the kids, and the parents all came together in the form of a penny drive and raffle to raise money. The penny drive was so much fun; Morgan really gets into it, competing to bring pennies in to earn an ice cream party for her class (the afterschool girls). The baskets for the raffle were beautiful and so many! We had a basket for every hobby or occasion and the kids had great fun choosing which basket they wanted to win. Our family was honored to be included in the fundraising for this event. I cannot explain my gratitude for the kind, giving hearts of our community. This generosity will allow us peace of mind as we continue to take Morgan to NYC monthly for 3F8 treatment. It is hard to describe the relief we feel knowing how we will get her to this very important treatment. Along with the day to day living expenses of an average family, we have medical expenses of gas to the many doctor appointments Morgan has each month, once a month trips to Memorial Sloan Kettering Cancer Center and living/eating expenses there, courier fees, co-pays, medicines- it becomes a little overwhelming. We know we will get Morgan what she needs, but it is a great feeling, no, a phenomenal feeling to know our community is in support of our Sparklyflower. Thank you!

I will update more as things slow down here and we make our way to the city. Thanks for checking in!

Our friend Chris in Helsinki, Finland is holding a cruise to benefit Morgan’s medical fund:

Chris Chancey

A rockabilly cruise night for the Pierce family in Helsinki, Finland
Friday May 7,
Cruise for Children's Cancer
The first cruise night in May in Helsinki.
Ravintolalaive Wäiski.
Bands include ,
The Greasers
http://www.myspace.com/thegreasersband
The High Fly Rangers
http://www.myspace.com/hiflyrangers
Plenty of Parking at Wäiski!!!!
http://www.waiski.com/
Door entry 8€

Thank you, Chris for organizing such an awesome event!

April 12, 2010

We are home! We arrived home late Saturday night after a nice but long drive. Morgan did really well on the drive. She and Ally stayed busy with movies, video games, and school work and art projects. It also helps that they both really enjoy reading so that passed the time as well. We decided to stop in North Carolina Friday night so we could get a good night sleep. It was worth it; I have come down with a repeat of last month’s sinus infection so I needed the extra sleep and am still trying to recover.

Clint is back to work and the girls and I are enjoying spring break. We set up a small pool in the back yard for them and they have taken full advantage of it. They are also glad to be able to sleep in!

The plan for Morgan this month is to re-evaluate hearing loss and make sure her hearing aids are properly set; continue physical therapy once a week and follow up with GI for her tummy issues; have HAMA blood drawn in two weeks. If she is HAMA negative, we will return to NYC in three weeks for cycle 11 of 3F8.

Thank you so much to the Ringler’s for letting us bunk with you for a night on our drive up. It was fun to see the kids play and hang out!

Fran and Jeff Demers kept our car at their home in CT while we were in the city. Parking goes for about $35 a DAY in NYC, so thank you for helping us out, you’re the best!

Please remember all the children who are fighting cancer today. The kids who are at home readjusting and trying live life as a normal kid need your prayers as much as those stuck in the hospital, waiting for counts to come up or fevers to go away. Good luck to Megan and Jack on the new NB vaccine trial. Please continue to pray for Ylaria as she recovers from last week’s chemo. Also, remember Bella from Tampa, she is no longer eligible to receive 3F8 so she is starting a new vaccine trial in Hershey, PA.

April 10^th was National Sibling Day. Ally and all of her friends who are siblings of a cancer patient deserve a huge thank you for learning how to cope with this disease and becoming a friend and helping hand to their own brothers and sisters and those of their friends. Thank you Super Sibs!

4-8-10
Today Morgan had bone marrow biopsies before her 3F8 infusion. She couldn't eat until they were done, about 1:30pm, but she didn't complain, she played in the hospital playroom and kept herself busy until it was her turn. The biopsies are a part of her scan work up. Every three months she has a ct scan, mibg scan, urine marker test and bone marrow biopsies of four sites, two in the front of her hips, two in the back. Her ct scan and mibg scan remain clear, we are so greatful, and we should have the bm biopsy results within the next two weeks.

She had pain and slight hives during today's infusion but thankfully (finally) her pain didn't come until the infusion was almost complete so the duration was much shorter. We are all so happy that she has one more day then three weeks to enjoy!

Since we drove up this trip, we are going to leave as soon as Morgan is cleared to go tomorrow. We are hoping to at least make it out of the city before wee bunker down for the night in a hotel.

I am packing up/cleaning our room at the RMH tonight so we are ready to go after 3F8's tomorrow. Thank you so much to our friends Fran and Jeff for helping us out with parking the car! Y'all are awesome!

It is always hard to leave either one of our homes; our Plant City routine and home life are wonderful so of course it's difficult to leave. We know how important it is to stay on top of this treatment with Morgan, especially because it is what helped to clear the remaining disease she had after hot 3F8 therapy. It is almost equally as hard to leave our NY home; we feel so connected with our NB family here at Sloan and RMH and want to be here to support them.

Please continue to pray for Ylaria. She is getting chemo this week and here with her Mom, Belen while her Dad, Gino and sisters Belen and Yoly had to return home for work and school.www.caringbridge.org/visit/ylaria
Please also continue to pray for the Chiasson family. www.caringbridge.org/visit/gabriellechiasson

4-6-10

We are in the playroom at the RMH. Ally is having a painting made of her face and Morgan is making something for me, but I’m not allowed to see what it is yet !

Morgan had another decent day today. She had a lot of pain again, but it didn’t last as long as yesterday. The ugly hives finally made their appearance but some visteral and Benadryl took care of that. We have Morgan on a medicine called neurontin to help with residual pain. Today she had severe pain in her jaw after the infusion, so we are going to increase her neurontin dose to hopefully keep the jaw pain from happening again. Morgan also started to cough some last night. I gave her visteral to help stop it and it worked. This morning she started to cough again so I think we will do a nebulizer treatment every day now before and/or after treatment so we don’t have any episodes like the last cycle of 3F8.

She feels good now, after a nice dinner provided by Newman’s Catering and some of my chicken and yellow rice. Three days to go!

I am going to repost my message from yesterday about Abby Miller for those who haven’t logged in recently. I cannot stress enough how important it is for the nb team at Sloan to have money for research. Morgan and her friends are fighting so hard and deserve to have the chance at these more efficient, more effective treatments.

On April 1 the song "If I Can Hold Your Hand", written by Andy Grube and sung by Abby Miller, was released on www.artzuno.com. For those of you who have not followed, 12 year old Abby Miller has been singing publicly for Taylor Love for the past 2 years. Abby has raised lots of money for Taylor's medical expenses and more recently for The Band Of Parents Foundation through her singing; as well she has brought lots and lots of much needed attention to Neuroblastoma.

The following Youtube video summarizes how this has all come to fruition. It is a wonderful story of love, dedication and Abby's desire to save Taylor's life.

To download "If I Can Hold Your Hand" go to www.artzuno.com, a 30 second demo can be heard and then the full song can be purchased for $1.99. Please be sure to pass this information along because every set of ears that take an interest in the song and our cause can make a big difference to the Band of Parents fundraising and the opportunity for another treatment option to be made available to attack this disease.

For more information about the Band of Parents please visit our website at www.bandofparents.org .

4-5-10

The 3F8 infusion is done and our Sparklyflower is resting comfortably. She had a lot of pain today, needing three iv dilaudid pain “rescues” but no hives. Her pain started early in the infusion so it seemed to last for a long time, but she made it through with me holding her heat packs, her Daddy holding her hands and Cat (our 3F8 nurse) holding the oxygen blow-by. She kept her oxygen stats at 100% but felt pressure on her chest and felt like she couldn’t breathe. After a good two hour nap we came back to the RMH. She ate a good dinner and actually played with the Good News Church volunteers in the playroom. They set up putt putt golf and a few other games with prizes and also ice cream sundaes. Thank you volunteers!

All of our NB families have been put through the ringer over the past few months. We have had some very close friends receive very bad news today and in the past few weeks and it only fuels the fire inside of us to find new treatments, better treatments for our kids. Everyday we are faced with the reality of how lucky we are to have two beautful, happy children and a loving family. We are forever indebted to the doctors at Tampa General Hospital, All Children's Hospital and Memorial Sloan Kettering Cancer Center for bringing Morgan to the NED status she enjoys today. She is able to live like a seven year old child should; going to school, playn with friends and being at home.

As I said before, our neuroblastoma community has been hit hard over the past few weeks. Several children have relapsed and others have gone to heaven. Remission for our kids is attainable; after a relapse, however treatment options become fewer. We need more money for research and we need it now! We are so close on so many fronts to continue to help our kids fight this disease. I ask that you continue to keep all of our little warriors in your prayers and pray for those families learning to live without a loved one this year. Please visit Ylaria’s site www.caringbridge.com/visit/ylaria she and her sisters Belen and Yoly and mom Belen and Dad Gino have become very dear friends to us and need many prayers and words of encouragement. Please also remember Justin, Sam, Eli, Gavin, Ila Jean, Andrew in 3F8 this week; Delaney, Ylaria, Liam starting high dose chemo for relapse; Megan, Jack, Sydney on new neuroblastoma vaccine. These are just a few of our friends. Thank you for your good thoughts and prayers.

I would also like to ask you to take a moment and view the following video. Abby Miller is a wonderful twelve year old girl who is doing an amazingly selfless thing to help kids with cancer.

On April 1 the song "If I Can Hold Your Hand", written by Andy Grube and sung by Abby Miller, was released onwww.artzuno.com. For those of you who have not followed, 12 year old Abby Miller has been singing publicly for Taylor Love for the past 2 years. Abby has raised lots of money for Taylor's medical expenses and more recently for The Band Of Parents Foundation through her singing; as well she has brought lots and lots of much needed attention to Neuroblastoma.

The following Youtube video summarizes how this has all come to fruition. It is a wonderful story of love, dedication and Abby's desire to save Taylor's life.

For more information about the Band of Parents please visit our website at www.bandofparents.org .

4-4-10
Happy Easter!

4-2-10
Morgan had her MIBG scan this morning. She did really well as usual, laying very still for the hour and a half scan, falling asleep about half way through. She lays on a table that is no wider than she is, with one huge, square box (scanning machine) at the end of a long arm a few inches above her head and one underneath her head that moves very slowly from the top of her head to her feet. I think I would be claustrophobic, but she listens to music or a book and never complains! It is hard to explain what goes through my mind while I sit in that room and stare at the black screen while the outline of her body shows up then fades over and over again as the machine records the image. I have never been able to predict the outcome accurately so I don't even try anymore. I waited until three this afternoon to e-mail Dr Modak. We have preliminary results: CT is negative and MIBG is negative! No neuroblastoma cells detected--we're so happy! She still has urine marker test and bone marrow biopsies next week, but this is great news and we can relax and enjoy our weekend!

Please remember the kids who are still fighting and those who have become angels. Please keep the Chiasson family in your prayers.

Take time to count the small blessings in your life, enjoy the time you have with all of your loved ones and have a wonderful, happy Easter weekend!

4-1-10

Happy April Fool's Day!

We are in New York City (no joke) and Morgan had her CT scan this morning. Everything went well, she finished the contrast in twenty minutes they did the scan and she is back in the playroom celebrating Easter. The child life specialists have set up a fun day in the PDH playroom for the kids to celebrate Easter complete with egg hunt, cookie decorating and an Easter pinata.

We will go down to Nuclear Medicine at 2pm for Morgan to get her MIBG injection, then we are planning a trip to the park so the girls can ride their scooters and play with their friends. The weather is nice up here, it's a little cool fir me, but nice enough for an afternoon outside getting some fresh air.

Tomorrow Morgan will have her MIBG scan (the big one-specific to NB cells) at 8am then we will head over to Ohio to spend Easter with my Aunt, my cousin and his wife, and my brother and his family. We are all looking forward to spending some time with family and Ally and Morgan are super-excited to see their cousin!

Morgan is HAMA negative so we will return to NY Sunday night and start cycle#10 of 3F8 on Monday, April 5th.

Thanks for checking in, we are hanging in there during SCANXIETY week and trying to keep our minds occupied until we get some results. Please pray for all children affected by cancer and please also pray for the Chiasson family.

3-22-10
The Pierce family has been keeping busy at home. Ally is playing softball and having a great time with it. She plays two games a week and has been in the backyard practicing everyday!
Morgan is feeling good. She is eating well and still enjoying her midnight snack before bed every night. She is scheduled to have her blood drawn for HAMA on Thursday. I will overnight the blood to New York and will get the official word by next Tuesday if she is HAMA positive or negative. We will make the trip to NY either way because Morgan is on the schedule for scans on April 1st and 2nd. She will have a CT scan, MIBG scan and bone marrow biopsies. If she is HAMA negative (good) then we will stay for 3F8 treatment the week of April 5th. It has been so nice to be at home. We planted a garden this weekend. Morgan chose butternut squash and Ally chose watermelon to plant along with some other veggies we enjoy. We used to have a garden every year but were unable the last two years because of our schedule. Hopefully we will be able to enjoy this one!
Other than physical therapy and HAMA draw, Morgan has been able to enjoy being home and living life like a seven year old should. She plays with her Barbies, plays outside in the waterhose and complains about how bored she is at her sister's softball games--life as it should be! Thanks for keeping up with us, I don't post as often when we are home, but as always-no news is good news. Please continue to pray for Morgan and her warrior friends as they go through various phases in treatment. We heard great news about our Brooklyn-the suspicious spot on her scan turned out to be nothing and she is HAMA negative and able to receive more treatment! www.caringbridge.org/visit/brooklyndavison. Also, please keep the Franca family in your prayers-Nick has relapsed and is going back to Sloan to start treatment yet again ..... www.caringbridge.org/visit/FrancaFamily .

3-16-10
Thank you so much for all of the birthday wishes for Morgan! She had a wonderful day on Saturday. Our flight on Friday night was delayed, so we didn’t get home until very early Saturday morning, but we were all up and ready to go to the Strawberry Festival and party!

Morgan wore her beautiful strawberry dress and rode the ferris wheel, the strawberry ride, the super slide and had a birthday funnel cake J

After the festival, we came back to the house and Morgan and her friends played and watched movies had birthday cake and made strawberry shortcakes! She loved her very special day. We are so blessed to have such a smart, beautiful and loving seven year old!

I’m sorry for not updating sooner, I have had a really bad sinus infection, but I’m on the mend now.

Ally and Morgan started back to school today. They are loving this great weather we are having , too. Everything is more relaxed when we get home. It is still difficult to transition from one life to the next. We miss our NY family while we’re home, but we REALLY enjoy being home! If this is our greatest trial in life, we’ll take it. We are so thankful that Morgan has been able to continue treatment and also experience a normal routine while we are at home.

Thanks for keeping us in your prayers. Please continue to pray for Morgan and also, Gabby, Aisy, Ber, Kate, Jensen and Ava and all other kids and families affected by cancer.

While we were in NY last week, we got to see some old friends that we met at the beginning of this journey. They are amazing parents and a trusted resource for NB info as their eight year old son has battled neuroblastoma twice and won. Fran writes beautifully on her caringbridge and I would like to share with you what she wrote, to give a glimpse of what we are facing with scans coming up next month: www.caringbridge.org/visit/jackdemers.

3-12-10
Morgan is finally sleeping after what has been a very long day. She started coughing last night and we couldn't seem to get it under control. We gave her visteral but it didn't seem to do the trick; she finally got some relief when she fell asleep. She slept well last night but started coughing as soon as she woke up. It was bad enough that we gave her a nebulizer treatment and IV visteral before they started 3f8. The infusion of 3f8 went well, she needed only one rescue and no hives but I think the hives didn't pop up because she also got a full dose of IV benadryl for the coughing. She continued to cough through two more breathing treatments, cough medicine with codiene, and more IV visteral. We were in the day hospital for a while. She had a difficult time falling asleep because of all coughing and all of the meds given. She did start to get some relief as they gave her the meds, she just kept having coughing fits. They set us up with some cough meds for the plane (just in case).
Her cough is most likely caused by the 3f8. It is an antibody and her body obviously puts up a defense when she gets hives during an infusion. Her chest is clear and her cough is dry so hopefully by tomorrow the cough will be gone. She usually bounces back quickly.
Towards the end of our hospital visit today and after the coughing started to subside, the childlife team at Sloan along with Ally and a friend Annie, brought Morgan an ice cream birthday cake and presents to jump-start the celebrations! Thank you Jessica and all the child life specialists at Sloan for being so caring and supportive!
We had a late lunch/early dinner and Morgan is finally able to sleep. We are heading home tonight and excited to have a great 7 year old birthday tomorrow :)

3-11-10
Just a quick update before bed....Morgan got through today like a champ; same three rescues and visteral for hives. She started coughing yesterday afternoon and that has continued today--a lot of the kids on 3F8 are coughing this week (must've had a mouse with a cold :)) She feels good otherwise and spent some time in the playroom with the New York Police playing games, getting prizes and having a pizza party!
She's really excited about her birthday party and we all can't wait to get home! Please say a prayer for tomorrow. Thanks for checking in.

3-10-10
Today was a three-dilaudid-rescue day for Morgan. She had a lot of pain but she handled it well like always; needed some benadryl for hives and slept for a long time after the infusion was over. She likes to sleep with her head on a pillow on my lap while I rub her back with a heat pack and hold the oxygen blow-by tube by her mouth. Her oxygen usually stays up on its own but she likes the extra air while she sleeps. We also play her some Norah Jones to lull her to sleep.
By this afternoon both Ally and Morgan were ready to finish up some homework from this morning and head down to the playroom. The 'Hole in the Wall' gang was downstairs and it was nice to see some friends. Ally ran around playing tag with the kids and Morgan painted a beautiful picture of Tinkerbell and then helped me sew together a strawberry sundress she will wear on her birthday.
We are settling in for the night now, watching tv and getting ready for day four. This week has been really long treatment-wise but we are really enjoying the time we have had with our friends. Our schedules are determined by our kids treatments and we all live so far away from eachother, this is the only time we have to spend together and it is such a great support system while we are away from home. Our girls are forging friendships to last a lifetime up here. It's very sweet and such a comfort.
Lots of good news from the NB world today; stable scans, improving scans and more treatment options. Please pray for all the kids in 3F8 treatment this week and also Kate, Ylaria, Dakota, Aisy, Gabby and children as well as families affected by cancer. It's a tough world up here and we all need your prayers.

3-9-10
Day two is done. Morgan's pain today was about the same as yesterday. We are back at the RMH; Morgan is sitting in the bed watching Disney channel and sipping on some water.
Thanks for the prayers and messages....three days to go!

3-8-10

Today was a typical Monday at the day hospital. Morgan did extremely well this morning, though. She didn’t have too much anxiety leading up to 3F8, she just had fun with her friends, did some homework and had breakfast (twice). The hospital was full of our friends from a long time ago and those who we see almost every trip!

The 3F8 infusion was intense, but Morgan handled it well. Our nurses didn’t let her pain get out of control, and she slept for a long time when all was done. We are back to the RMH now and she is happy to snack and watch her Daddy race on the Wii. She likes to watch Clint and Ally race rather than play it herself J

Tonight we are having another family dinner. It is nice to make one dish to contribute and sit down with friends to a great meal. We all benefit from the company of our friends who share these similar experiences.

Thanks for keeping us in your thoughts and prayers!

3-7-10

The Pierce Family landed safely in NYC today around noon. We got to RMH, put our bags in our room and of course Ally and Morgan wanted to go straight to the playroom. Good thing because A LOT if our friends were there, so we had a nice little visit with everyone while the kids played games and painted with their feet. After some fun we were off to get some lunch then a quick trip to the grocery store for some food for the week. Tonight we had another shared dinner with our friends. Melissa and I made lasagna and we also had garlic bread and really yummy salad and brownies. Morgan liked the lasagna best, but Ally only ate her food so she could have a brownie J

After dinner we headed upstairs to prepare for the week. Morgan has already said that tomorrow will be the “worst day ever” and I can’t disagree with her. Hopefully she’ll have fun in the day hospital playroom with her friends Kate, Ylaria, Jayden, Jensen, Justin, Sam and all the other kids here this week that we’ve come to know and love. Mondays are busy so we are expecting a long day as usual.

Please pray for Morgan this week and all the children affected by cancer. Also, enjoy the warm weather if you’re in Florida; I read that the cold went away as soon as we got on the plane! It is mild here in the city (if you’re a New Yorker) but it’s still too cold for me and Morgan!

3-1-10
Happy March! The Pierce family had a busy week last week and a busy weekend! Morgan is going to school full-time now and having lots of fun with her friends. I have been able to work a little more because she is doing so well with staying at school. Her energy level continues to increase and she still takes short breaks through the day as she needs them. She even went to p.e. last week - a first for her! We spent time with family all weekend and had so much fun playing in the playhouse, fishing, and eating, eating and more eating!

Last week, I took Morgan to a physical therapy evaluation. She is much more active now than she has been over the past year but I wanted to make sure she is healing to her full potential. It was decided that she would have one therapy session per week to rehabilitate the muscles in the back of her legs that have shortened from all the bedrest and sitting she has been doing since November 2008. She also has a habit that isn't good for the leg muscles: walking on her tip-toes. I hear this is hereditary and it is something she's always done, but like I said, we want her to be at her full potential and be able to physically keep up with her peers. Jessica, our physical therapist is great and we look forward to playtime with her :)

Hopefully we will also be able to pick up Morgan's hearing aids this week. She had a screening done in November that showed hearing loss in the high and low frequencies, so we have been waiting for the hearing aids to come in since then. Morgan can still hear, just not as well from a distance or with interference from background noises. This should help her feel more comfortable with understanding speech in group situation, but it's going to nix her selective hearing she likes to use with her mother ;)

Tomorrow, we will get HAMA results. If she is negative, we will leave sometime this weekend to start cycle#9 of 3F8 on Monday, March 8th. Her birthday is next Saturday (March 13th) so we will try to get back as early as we can so she can celebrate all day!

Thanks for your continued support. Please pray for Aisy, she's coming home for a well deserved visit this weekend; also please pray for Gabby. We are so happy that our buddy Kate made it through surgery and is on the road to recovery.

2-22-10
This Thursday, I will send Morgan's HAMA blood to NY and we will find out next Tuesday (March 2nd) if we will go to NY for cycle#9 of 3F8 on March 8th. I haven't purchased our plane tickets yet since we won't know the HAMA results until next week.
We have had a tremendous amount of loss in the NB world this month. Please keep the Ludwinski, Cavanaugh and Wall families in your prayers and also Kate Madigan and Katie Klien who both relapsed within days of each other last week. They are wonderful children and they need our prayers. Our friend Ber had a successful surgery followed by a complication, but he is now home and doing well, going to school while waiting to begin chemo next week.
I know it's not an easy thing to think about, kids with cancer, but these kids are so healthy and happy and besides the bald head, you couldn't tell them apart from a healthy child. There is so much vibrancy and life on the pediatric cancer floor; they don't deserve this, but they are strong and wise beyond their years. Thank you for continuing to follow this site and others, and thank you for keeping all cancer warriors in your prayers.
I mentioned the benefit for the Jessica Rose Foundation in a previous post. I met with Jessie's amazing mom this morning and I know we will see great things coming from this foundation in support of local families facing pediatric cancer. The website iswww.jessicarosefoundation.org.

2-18-10
Just a quick update to let you know that Morgan is back to school and back to her spunky, happy self again! She is full of energy and feeling really well. She took her bandage off from where her temporary central line was and it looks good. She is happy to be free from those tubes and gauze dressing.

For those of you who follow caringbridge sites, we have another prayer request for you. Please go to www.caringbridge.org/visit/berto read about our friend Ber. He recently relapsed and had surgery on Wednesday. He is currently in the ICU unit at NYPresbyterian.

2-17-10
We're home! It took us nearly 24 hours but we are finally relaxing in our own house. The snow storm yesterday caused major delays at the airport. We were at LaGuardia for about five hours which caused us to miss our connection flight to Baltimore. Lucky for us, Morgan and I had a team of friends looking up flights and hotel rooms in Baltimore, just in case we had to stay. Thanks everybody for all your help! When we got to Baltimore, we had to wait for our bags, then took the shuttle to a hotel, got some dinner and a shower and a couple of hours sleep. We were up at six this morning and back to the airport to get HOME! Our flight to Tampa was delayed for about an hour this morning and by the time we got home and settled I think I slept for about four hours!
Ally and Morgan jumped right in to playing and have been enjoying being home together again. It's so fun to hear them giggle and squeal while the run through the house!
We are going right back into our routine tomorrow with school and work. Morgan is scheduled to return to NYC on March 8th for cycle#9 of 3F8. Until then, I will update as I get any news to share, remember, no news is good news!
Have a great week and weekend :)

2-15-10
Happy Monday! Last night, I took Morgan to urgent care at Sloan for a shot that is designed to increase stem cell production. It has to be given within 12-15 of a collection attempt. The shot itself didn't hurt thanks to our lidocane cream, but the medicine hurt going in. Thank goodness it wasn't a very big shot. Thanks, Miss Shannon for walking us over!
Not surprisingly, today was a long day at Sloan. We started @ the PDH by 8am. Morgan needed her neupogen shot and type and cross and cbc (bloodwork) done. Because the type and cross wasn't done until this morning, we had to wait an hour and a half for the blood to arrive. In pediatric patients, a stem cell collection would remove too much blood from the body at one time, so each time the nurses have to prime the line with donor blood (thank you blood donors!) which is why we needed the type and cross. Once the premeds were given, it was discovered that one of Morgan's two lines wasn't giving blood return. This is not a good thing. It took another hour to figure out what to do. We decided to start the collection, but only at about half the rate so the line wouldn't clog. we had to keep her in a sitting position while she tried to sleep with her head wobbling all around. By three o'clock, Morgan was really ready to go by 3 and with good reason. They just called from the day hospital and said we didn't get ANY stem cells with our collection today. What a bummer. I hate that we kept that stupid line in for three extra weeks, gave all those extra shots and got nothing. We will get the line out tomorrow and then go home. I'll post more later.

2-13-10
Yesterday's 3f8 infusion went as planned and we were back at the RMH by the afternoon. Morgan had a good night and hasn't had any pain since.
We decided to take it easy today, she got her bath, watched tv, worked on some crafts and then we went down to the playroom for some Valentine's Day fun. The Sunday night volunteers put on a fun party with sandwiches and candy, a dj and a clown. We are back in the room now, getting settled in for the night.

On Friday the team let us know that we are definantly going to stay on every three weeks of 3F8 for four more cycles. We are happy that Morgan will continue to receive this vital treatement even though she is not happy that we have to ome back so soon. This change in plans also means that we will need twice the plane tickets as planned. If anyone has frequent flyers miles that they would be willing to donate we would be so greatful! I am hoping that since we usually fly JetBlue that they will let us use some of our points toward tickets.

Tomorrow, Clint is flying home to go back to work and be with Ally. Morgan and I are staying behind to attempt another stem cell collection this week. She will get a new drug this time, in addition to neupogen that the team has had great success with in stem cell production. Hopefully, this is the last time we will have to do this and we will get lots and lots of clean stem cells! Morgan has to go to Urgent Care on Sunday night to receive a subcutaneous injection, then be in the donor room early Monday morning to start the collection. We should know by late Monday afternoon how many cells were collected.

Thanks for all your thoughts and prayers. Please keep them coming!

2-11-10
Today's 3F8 infusion is finished. It's 11:30am. That's pretty good time considering we got here a half hour later than usual, but it's also a sign that the week is coming to an end. Every day goes by quicker than the last (on a good week, anyway). Morgan is resting with her oxygen and her ice water by her side. We are finishing up a visteral infusion for some hives, and she has heat packs lining her back. One more day to go.

2-10-10

We finally have internet! The RMH is kind enough to provide us with internet service, but we have to wait for a password to use it!

Morgan had a normal 3F8 infusion yesterday and today. She has intense pain that lasts for about 20 minutes then she sleeps and sleeps and sleeps. This afternoon, she played on the computer for a while up in the room then it was off to the dining room for dinner and ice cream cone cupcakes. All the kids at the house seemed to come down when we started mixing the cupcake batter, so all of our friends helped make the cupcakes tonight!

We are still in the dining room, playing bingo and waiting for the cupcakes to come out of the oven.

We heard from the team today, although last time we were here they said we were moving out to every six weeks, the team decided yesterday that we should stay on every three weeks for at least four more cycles. This is standard for a patient who enters 3F8 protocol with disease. They are very pleased that she cleared so quickly but want to give her as much 3F8 as possible before she HAMA’s (human anti-mouse antibody). Our schedule will be every three weeks until cycle#12, then we will move to every six weeks. Or maybe not. Things tend to change around here, but I’m not complaining, they are doing what is the absolute best for Morgan!

It has been snowing here since last night. We took the RMH bus to the hospital this morning and walked back from the hospital this afternoon . I never realized how hard it is to walk forward when it’s snowing. For five blocks, we looked up, got snow in our eyes and looked back down trying to keep track of where we were going! It is pretty, but I appreciate looking at postcards more than walking through it!

Two more days to go.

2-8-10

We made it into the city yesterday. It is COLD here! There isn’t any snow on the ground, but I’ve heard talk of some snow/rain to come this week. We had a chance to settle in at the RMH, room #901 and have a Super Bowl meal with our friends here at the house. Two families that we haven’t seen in a while, Shannon, Carey and little Brooklyn who are here for 3F8 this week, and Carmen, Scott and Ty who were here for surgery, along with Diana and Bella came up to our room to watch the game while the kids played with play-doh and connect 4. We had a great time and it was nice to reconnect with our friends.

We are currently in the PDH @ Sloan. Morgan has finished today’s infusion of 3F8. She did a fantastic job- she needed three dilaudid rescues and oxygen today. She had a lot of pain at the middle of the infusion which she seemed to internalize, humming and tensing her muscles. She is sleeping soundly now, we are waiting for her heart rate to stabilize.

Thanks for checking in, I’ll post again tomorrow.

2-3-10
Morgan is HAMA negative! Although we dread having to make the trip back to the frozen tundra of New York City, we are so greatful that Morgan can receive another round of 3F8 treatment. We started the GM-CSF shots tonight. Morgan was obviously not very happy about it but she did fine.
It has been a nice mix of work and play this week. Yesterday Morgan wanted so badly to have school lunch and stay for the whole day, so I let her buy school lunch and we ate outside. She was so proud of herself for staying at school all day! I am still nervous about her getting sick so close to treatment time, so she will have lunch outside with me the rest of the week, but hopefully she will be able to spend the whole day in school the next two days. When we return home, I think she will be ready to resume a normal school schedule-what a treat that will be for her (and me)!
It has been so nice to be home. I find myself reflecting on the past year and counting and re-counting our blessings. We have so many people to thank for helping us make it this far. If you haven't received a thank you card yet, it's coming! I am working on them everyday!
This Saturday, we will attend a grand opening for The Jessica Rose Foundation in Lithia. Jessica had neuroblastoma and was treated at Sloan. Her mom has set up a foundation to help families affected by cancer in the Tampa area. If you can make it, we'd love to see you there! More info at: http://www.jessicarosefoundation.org/

Thanks for thinking of us and checking in :)

1-30-10
One year ago today, our baby girl went into surgery to have a mass removed from her abdomen. We started the day unkowing of what was to come- Dr Laquaglia will never tell you how long a surgery will last or exactly what it will entail- only that it will take as long as it should and only do what is safe for Morgan. We know now that hers was an easy surgery by NB standards and she has come a long way since that hospital stay. We are so appreciative of Dr Laquaglia and his staff for taking such excellent care of Morgan. He came to visit her everyday through the weekend and the week following her surgery, offering advice and astounding at the great progress she was making. He is the only doctor that will answer all of my questions before I ask them (I ALWAYS have more questions for the doctor) but he has a way of explaining things and such a comfortable demeanor that I couldn't think of anything else I needed to know, and we knew she was in great, capable hands with him. it really hits home, now that we can look back at last year's calendar to compare days and see how we were living just one short year ago. We are lucky, and we know it. We continue to count our blessings and enjoy every moment we are given.

This was a very fun, very busy week for us. Morgan went to school every day except Wednesday. She is feeling good, but is having some tummy troubles. We went to see the GI doc and she thinks Morgan's tummy issues might stem from the stomach flu that we all had last week while in NY. Her body is taking longer to recover because of her surgery and the chemo she received last year. She still doing well, though and very, very hungry!

It was a busy week for me because I was able to go back to work this week. Everyone at the center welcomed me back with open arms (thanks gals :) and I was glad to be able to help out. I didn't realize just how much I missed being there with all my friends and having fun with the kids. It was exhausting but a really fun week. I hope to be able to continue helping out up there when I'm needed!

Ally had a good week. She had a field trip on Friday to the Manatee viewing center. They saw some manatees and a dolphin!

We are really enjoying being home. It is so nice to have dinner at our house and relax. We have been keeping busy with home repairs, too, those never wait for a convienient time so we are trying to squeeze everything in while we can!
Have a great weekend :)

1-27-10
It has been a fun week so far. Morgan has settled back into school and is feeling good. She is still having some discomfort from her temporary central line, but we are trying to keep her from getting too rowdy so as not to aggravate her shoulder.
She has also had a full week of doctor appointments, mostly catch-up stuff after a year in treatment.
We are loving every minute of being home. It's so nice to be outside and not running to get to the next heated building! It is getting easier to settle back in to home life when we return from the city.

I want to clarify a few things from my last two weeks of posting: I get a little hurried sometimes when trying to explain things. Morgan is doing stem cell collection to store bagged stem cells for use in case a harsh treatment, such as hot 3F8, is ever needed again. If the cells are given back to her, it is called a stem cell rescue. Since she is NED now, we hope we will never use these, but it is good to have them anyway.
When Morgan is going through 3F8 treatment, she is given dialudid "rescues" for pain. I'm not sure where the term came from, but when Morgan is having pain during treatment she tells us she needs a "rescue". It's really hard for me to explain things so I try to write it as I understand it. Hope this helps :)

It is so heartwarming to know how much Morgan has affected so many; we are so proud of her for what she has gone through, how she has handled it, and the beautiful young lady she is becoming.

As always, please pray for all the families affected by cancer. Please keep Ylaria in your prayers-thankful for no disease progression and great news of a new treatment option for her. Also, please say a prayer for my friend Donna and her son Nathan as he recovers from a car accident.
Thank you.

1-23-10
The Pierce family is back in the warm Florida sunshine. Well, warm at least, not much sunshine, but at least we can wear shorts!

Yesterday's clinic visit was not without a few surprises (of course) and it was decided that since we are in a good postion as far as Morgan's scans and treatment goes, we should attempt, one more time, (actually #4 since dx) to collect stem cells from her. Since she still had a temporary central line in to do this, we decided to keep the line in, come home for two weeks, back to Sloan for cycle #8 of 3F8, then another stem cell collection. That will put us in NY for two weeks again. The doctors at Sloan have a drug they can use to boost stem cell production if needed. They didn't feel it was needed this past Monday, but after this week, they want to try and use it on her the next time. The line still causes her some discomfort and swimming isn't an option with it in, but we'll manage. Luckily, the nurses at Sloan sent us home with a goody bag and a teaching of all the stuff I'll need to take care of the temp line while we're home, then after the next collection it can come out for good.

Clint caught the stomach bug again, so that wasn't much fun this morning in the airport and on the plane, but the rest of us are feeling good, so hopefully it's run it's course with everyone.

We are hoping to spend some time in and outside of our home before we start back to school and work next week.

Have a great weekend!

1-22-10
Once again, I am sorry for the delay in updates. We all caught a nasty stomach bug Wednesday night and we are finally feeling better this morning.
The first day of stem cell collection yielded one million stem cells. That seems like a lot, it is a good number, but we were looking for seven million total. The second day we got .6 million so the team decided to try for one more day. We won't know how many total until later this afternoon. Hopefully we got at least one full rescue of two million cells in all. At least it's over. Her reactions lessened with each collection (no more fevers) but they were still worrisome for me.
Morgan is feeling better and is ready for the temporary central line to come out. It is stiched to the skin on the outside below her shoulder and it causes her a lot of discomfort. Today we will go to clinic and have that taken out and have her port de-accessed.
Tomorrow we are coming home! We are really missing our home and our dog and can't wait to get back to school and see our friends! We will have two weeks at home before we will come back for cycle #8 of 3F8.
Thanks for being so patient with me while I recovered. We love all the guestbook messages and cards/package that we have received. Thanks so much!

1-19-10
Writting to you from the pediatric day hospital. It is 5:43 and Morgan is sleeping. We have had a very long day, but if this is the worst, I'll take it. So much better than what we've seen in the past year and a half. There were delays this morning in the procedure room, so our 9am appointment turned into an 11am appointment. This wouldn't be a big deal for Morgan except for the fact that she can't eat or drink anything after midnight on the night before anesthesia. She had a stomach bug last night and after trips back and forth to the potty from midnight to six am, she was dehydrated and really, really thirsty. After the line placement and x-ray, she was finally able to drink. She perked up a lot after that. Her stem cell collection went well after a shaky start. She started to get red at the beginning of the collection procedure and then spiked a fever for all of ten minutes, so that is why we are sitting in the day hospital at 5:45 tonight.
Again, not complaining, just describing our adventurous day!
Morgan had cultures drawn from all her central lines (three at the moment) and she is now receiving antibiotics to cover for possible infection. The good news about this is that her counts are solid (good) so we get to go back to RMH tonight and the cultures will be watched for the next week.
We wont know if the stem cell collection was successful until 11am tomorrow. If we need to, we will try and collect again tomorrow.

1-18-10
Friday's 3F8 treatment was much better than Wednesday and Thursday. Once we got started, we were in and out in a few hours.
This weekend was a busy one. We had a visit from our new friend Avery and her Dad. They came to the RMH and Ally, Morgan and Avery had a great time playing together. We had lunch and then brought them back to the Ronald for more playtime and a chance for them to meet some of our dear friends here at the house, and also some of the wonderful volunteers who do so much for us.
Yesterday we had a HUGE potluck dinner with four other families staying at the house. We had mac-n-cheese, black beans and sausage, chicken casserole, cornbread, even traditional yorkshire pudding! It was a FEAST we won't soon forget (we were all too stuffed to move for a while after) and it was so nice to spend time with our NY friends. Once we were able to walk again, we took Ally and Morgan to Jensen and Jayden's room to play dance party on the Wii. They had SO MUCH fun together, the three girls even got Jensen to do the Cotton Eyed Joe!
Today we went to clinic where Morgan had her port accessed and labs drawn. Tomorrow we will go in early (7am) to have a temporary central line placed for stem cell collection.
Thanks for the messages and cards, we appreciate you thinking of us when we're so far from home!

1-15-10

NO EVIDENCE OF DISEASE! We have all scan reports in and Morgan has No Evidence of Disease! Her CT, MRI and MIBG were clear and her urine markers are within the normal range (a good thing). We are so happy to have this wonderful news to share with you! She had her bone marrow biopsies this afternoon, so we will have to wait for those to come back for the “official” word, but we are overjoyed!

Our schedule will stay the same for one more cycle, then she will move to a schedule of 3F8 every six weeks. She will still have a complete work up of scans and biopsies every three months (you can never be too careful with this disease) but our time at home will be a little longer.

Morgan is getting her pre-meds for 3F8 now. I’ll post more this weekend 

1-14-10
Today was much better for Morgan. She still needed three rescues of dilaudid, but she was very calm throughout the infusion and flush. I think she figured out to ask for the medicine before the pain peaked so it wasn't as intense. She did get hives but not too severe and we were back at RMH by 5pm. She had a nice dinner with her friend Belen and now we are up in the room and she and I are playing with play-doh while she watches tv.
Thanks for all the messages on the guest book! We miss everyone at home and can't wait to get back to our sunny home :)

1-13-10

What a day! In my haste to get Morgan to the MIBG scan on time, I forgot to give her the shot she needs before 3F8 treatment! Of course, I didn’t remember the shot until we were finished with the scan, finished with lunch and up in the treatment room waiting to start. We have to wait at least an hour after the shot to start the infusion, so needless to say, it was a LONG afternoon! Morgan’s roomate during 3F8 is Kate, she is such a sweetheart and likes Junie B Jones and Hannah Montana, just like Morgan! Our room is considered “the girls room” and next door Justin and Sam are in “the boys room”. Today the kids had fun eating lunch and playing together then sneeking in and out of the rooms and blocking the door with secret passwords  Once treatment started, I thought she might have a good day; she was reading her book and comfortable. After the flush started, she needed three rescues and visteral AND benadryl for hives. She had a hard time dealing with the pain, maybe because it came quickly and towards the end of the flush. Of course when she woke up she wanted to “get out of this place” so we are back at RMH and she is sleeping.

We have no results from the MIBG scan, and all we know of the MRI and CT is that “they didn’t page” Dr Kushner about it. I guess this means no news is good news until we hear otherwise. I normally park myself in the waiting room until someone sends Dr Modak out to give me some kind of scan results, but I didn’t want to leave Morgan and they won’t really know yet anyway. We should know all ‘official’ scan results by Friday, and bone marrow/catecholemine results by next week.

Only two treatments left, and bone marrow biopsies on Friday, then she will have a break over the weeekend, thank goodness.

1-11-10

Morgan is happily munching on Cheeze-it’s and watching Food network while she paints a heart shaped jewelry box. Her sister is doing the same. We had a very long day today, but all went well. Morgan had her CT scan and then MRI before receiving 3F8. I haven’t heard anything back from those two scans, but we will know by tomorrow.

3F8 was…………….. well, it was 3F8. She needed three rescues and visteral for some hives. I don’t think we’ll ever get used to seeing her in pain, but it’s important that she gets the treatment; we all know our roles in that hospital room and we get the job done. We got back to RMH around six and Morgan went to the playroom to do crafts, then to dinner in the dining room. She was done after an hour, ready to get into bed and watch some TV.

Today’s schedule was the most complicated of this week, so hopefully she will get some good rest before and after treatment the rest of the week.

Yesterday, we were treated to a fabulous tour of FAO Schwarz and attended an awesome birthday celebration for Eli (Ava Holder’s brother) hosted by Candle lighters of NYC! We loved our guide, a Toy Soldier named Rich, he really made each one of the kids feel special after the tour they had cake, presents for everyone and a piñata STUFFED with candy. Ally, Morgan, Clint and I had so much fun learning about the store, playing with the toys and having birthday cake and presents! Thank you, Barbara, for thinking of everything and making the day so special and thanks to Eli for sharing. We are so glad we were able to be a part of it! Check out the pictures on photo bucket!

January 10, 2010

We made it to New York! It is really cold here, much like it was when we left Florida yesterday! The temperature in the city is supposed to get back up to freezing (32) by Tuesday, so that’s something to look forward to

I am so sorry for the lack of updates. Having three weeks at home to be with the kids was so much fun. Last week, Ally and Morgan went back to school. Morgan is feeling good, she was able to go to school every day, she stayed for a little more than half a day and it was nice to have the routine.

We are going to visit with some friends today and then rest up for the busy week ahead. Tomorrow, Morgan has a CT scan and an MRI. She has to drink the nasty contrast for the CT and the MRI is long and loud and she has to stay perfectly still. I know she will do fine, then after the scans are finished, she will get 3F8. We are on afternoon shift all week. This isn’t our first choice; Morgan likes morning shift so that she can “get it over with” but it’s a packed schedule so we will make due.

Thanks for checking in, I WILL update at some point tomorrow after we are finished with our busy day 

1-2-10
Happy 2010! We hope everyone had a safe and happy New Year’s Eve. We stayed home; Morgan wanted to have a fire in the backyard, so we had our supper around the fire and watched some fireworks from the comfort of home. Ally and Morgan stayed awake until midnight- we watched the ball drop on TV; Ally was very excited to ring in the new year- Morgan wasn’t sure what all the big fuss was about on TV  but she was ready to change over her calendar!

We spent New Year’s Day with our friends, The Bledsoe’s. They spent a lot of time with us in New York while their daughter Aisylin was in treatment at Sloan. Even though we are both from Florida we’d never been able to get our families together here at home- until now! It was a great time seeing Ally and Morgan playing with Aisy and Jasper while we cooked the traditional collards and black eyed peas for dinner! Thank you Derek and Steph for a fun time together!

On the medical front, we are scheduled to return to the city for 3F8 and scans the week of January 11^th. We will have the weekend in the city to relax and then Morgan will have a temporary central line placed on January 19^th so we can try to collect more stem cells from her. We have two bags of stem cells left, but they were collected while her bone marrow was still positive, so we would like to try and harvest more now that her marrow is clear. If she were to need any harsh treatments in the future, these stem cells would be useful. She is finishing cycle#3 of Accutane this week. It has been a decent run, the typical dry skin and weepy-ness (is that a word?!) have been the only side effects.

We have two friends who have received some bad news this week. Please pray for the Jensen Byrd family. They are in NY this week, Jensen was scheduled for 3F8, but after two treatments and some neurological issues an emergency MRI showed that he relapsed in the brain. His surgery on Thursday went well, but they have a long road ahead of them. His site is caringbridge.org/visit/jensenbyrd. Also, while in NY for scans, our friends the Holder’s are facing little Ava’s brain relapse. Her site is caringbridge.org/visit/avaholder.

Thanks for keeping our family and our other kids in your thoughts and prayers. We know how lucky we are to have you. We are so blessed!

12-28-09
What a wonderful week.
The Pierce family was lucky enough to have three Christmas dinners with family over the past few days! Morgan and Ally had so much fun with their cousins, aunts, uncles and grandmothers. We have been relaxing and enjoying our home and all the toys Santa brought for the girls!
Thank you for the Chrismas cards and well wishes on the guestbook. I didn't get Christmas cards out this year but I did update the pictures on our photobucket. To view the pics go to the pictures page on this website and click on the recent pictures link.

Happy New Year!

12-20-09
Friday was a tough day for Morgan. She had a lot of pain and some hives. She felt much better by the afternoon, though. We are so glad to be done with cycle#6!
We are home. It was a long day yesterday, we had a flight for last night but I called to try and move up the departure time due to the impending weather. JetBlue was able to accomodate us on another flight leaving at 7 (thanks JetBlue!). I was just praying that it wouldn't start snowing until night because I knew once it started snowing, it wouldn't stop. It started snowing in the city around 3pm and we were at the airport by 5. We waited in the airport terminal and on the plane for a LONG time, but thank goodness, we were in the air, above the snowclouds by 11pm!
Ally and Morgan are so happy to be home. We have so much to be thankful for this year, and we are enjoying each day that we are given.
We wish you a very Merry Christmas!

12-17-09
This has been a very long week. We are all glad it's almost over. Yesterday and today were mild compared to the last five rounds of 3F8. Morgan still has pain, but not as intense and she has only had hives twice this week. She still feels awful all afternoon, but she is sleeping well at night. I'm not sure if this is a sign that she has HAMA'd, but there's no way to know for sure until we send in the blood draw in two weeks. Until then, hopefully tomorrow goes as smooth as possible and we are excited to get home and celebrate Christmas!

12-15-09

It's 11pm and Morgan just sent her Daddy into the streets of NYC in search of some french fries for her midnight snack! She is feeling good, other than some residual pain in her feet. please check out the picture page for a new kid of the week.

12-14-09
Day one of cycle#6 is complete. We are back at the Ronald and Morgan is on the couch with hot and cold packs watching Hannah Montana. She had a long day waiting to start treatment, luckily she had some friends to play with in the playroom whle she waited. She needed two rescues but no hives so far!

We arrived in NYC Saturday night after a long day of travel. We were so happy to see our friends at the Ronald and catch up on the latest news from everyone. On Sunday we met and had lunch with an amazing girl. Her name is Avery and she is a very special girl. She stumbled upon the word neuroblastoma while surfing the internet and learned a little about this rare pediatric cancer. Even though she is only in the sixth grade, she decided that she wanted to do something to help and, wow, did she ever. She made bracelets and bumber stickers that say "help a kid with neuroblastoma" to sell. She is spreading awareness about pediatric cancer. She is a wonderful girl and we enjoyed meeting her and her parents yesterday.

12-9-09
Morgan is once again HAMA negative! This means she has not developed an antibody to the mouse proteins in the 3F8 treatment. We will fly to New York this weekend and start cycle #6 of 3F8 on Monday. We should be home the following Saturday.
Morgan has been feeling great while we have been home. She is going to school for half a day and she has enough energy to complete extra schoolwork at home and play with her sister in the evening. She has been eating very well and still requests her "midnight snack" around 8 o'clock every night! Since we have been home, we have visited with some family and friends and I can't believe how fast the time has gone by.
I didn't post last night because we had to wait until after 5 to recieve HAMA results, then it was a night of searching for a flight to NY and then several (crazy) phone calls to the insurance company to fill meds for the upcoming week. Thanks to Aetna for figuring it out while listening to a frantic, crazy mommy who wouldn't stop calling! And thank you to the Hamel family for helping us out as well, we appreciate you so much.
Our internet access is very slow, but we will get the Miley Cyrus concert pictures up as soon as we can.
Thanks for checking in!

12-4-09

All I can say is WOW! Morgan and Ally had a WONDERFUL time on Tuesday. The day started with a limo pick up from our house to Secrets Salon (305 Robertson, Brandon) for a professional hair color and style and manicure (glitter included) by Stacey and her crew.
After the super salon treatment, we were driven to Red Lobster for a filling lunch- Morgan had her usual- popcorn shrimp! Next it was time to check into our hotel room for a little rest before the show. We had to arrive at the Forum by 2:30 to get in for the sound check. Both Ally and Morgan got a concert t-shirt and we watched the band practice some songs until Miley came out to sing. Miley took pictures with the radio contest winners, then came over to say hello to Morgan. She was very sweet, answering the both girl’s questions and asking Ally and Morgan about themselves. After the meet and greet, we went to dinner at Medallions (inside the Forum) and had an absolutely fantastic buffet dinner followed by cupcakes to celebrate Morgan’s special day.The concert was great, Ally and Morgan were on their feet, dancing and singing and waving when Miley walked to our side of the stage. We were sitting very close, four rows up, just to the right of the stage. Also, about half way through the concert Mitchel Musso (Disney channel star from Hannah Montana show) showed up to see the concert and stood about ten feet from where we were sitting! We ended our night with a limo ride back to the hotel. We would like to thank Make A Wish and Brenda and AJ Springer (our wish granters) for making Morgan’s dream of meeting Hannah Montana (Miley Cyrus) come true. It was a magical experience.

Morgan has been doing so well since we have been home. She has more energy than she’s had in over a year. She still needs extra rest and has a long way to go before she is back to the shape she was in last summer, but the improvements are astonishing. It is an amazing thing to watch. I can’t tell you how much I appreciate being home. We have been able to go to school all week, and come home to do homework/laundry/cleaning/reading and all the other things that I used to stress about getting done. Now I enjoy it. It is easy to lose sight of how lucky we are to be able to do these things. I still get caught up in the day to day stress like everyone else, but seeing Morgan dancing her way into school this week, and seeing her not completely exhausted after an hour of play has jolted me back into reality and I feel so blessed to be home with my family just living everyday normal life. Please know that I think about all of those who have helped us along the way-we still have a long way to go- but I know we wouldn’t be where we are without the help of our friends and family. Thank you. Our family has so much to be thankful for this year.

On the medical front, Morgan had her HAMA blood drawn yesterday and I sent it off to Sloan. We will get the results from that on Tuesday. If she is HAMA negative, we will go to NY the following Saturday for cycle#6 of 3F8. I took her to clinic today to receive her Pentamadine (antibiotic) treatment. We did a blood test at Sloan to determine her immune function. We will get the results from that on Monday and that will determine whether she needs to continue the prophylactic antibiotics. We are almost finished with cycle #3 of Accutane. Thank goodness. This cycle hasn’t been too bad, she’s been a little moody and has had some dry skin.

We are using a new program for our pictures, so please bear with us; we will get some more pictures up as soon as possible.

Please remember Aisy in your prayers (caringbridge/visit/aisylinbledsoe) She is enjoying her home and her family and defying the odds! What a strong little girl!

Have a great weekend!

1-11-10

11-30-09
Can you believe tomorrow is December 1st? It has been a quick month for us. Ohio was just beautiful! It was so nice to visit and spend time with our Aunts, Uncles and cousins. Thanksgiving dinner was great and the girls made smores outside by the fire on Thanksgiving night. On our way to the airport Friday morning it started to snow-HUGE snowflakes were coming down-Ally said it looked like we were traveling through time! We are home now, enjoying this nice Florida weather! Morgan is feeling good. We have noticed that she has more energy lately. She still needs to rest through the day, but only for short periods of time. She and Ally are back to school this morning after our mini vacation.
Tomorrow iis a big day for our Sparklylfower. She has been granted a wish by the Make A Wish foundation- she's going to meet Miley Cyrus! She says that she is Miley's BIGGEST fan and she is so excited to meet her tomorrow and watch her concert in Tampa. Of course, Ally, Mom and Dad are allowed to tag along. Ally is super-excited as well! It will be a day to remember and I will post lots of pictures when we get home.

11-22-09
We made it to Ohio! It has been so nice to visit with our family. The weather is beautiful--a little chilly for me and Morgan, but very nice to be outside bundled in our jackets.
We are counting our blessings this week, and remembering where we were just one short year ago- at home, recovering from a tough round of chemo, but on our way back in with fever the day after Thanksgiving. We are so happy things are different this year, and our girl is feeling good. She has been very active with her sister and cousin and taking much-needed naps in between. Please remember the families in treatment this week. Thank you for continuing to keep our family in your thoughts and prayers-- and have a very Happy Thanksgiving!

11-20-09

Morgan says, “five down, none to go!” Today was a very difficult day for Morgan. It started out late, because I forgot her g shot at the Ronald, so we had to order one from pharmacy, wait for it to be filled then dropped and then I could give her the shot. When the infusion started she was fine, happy, ready to “get it over with”. When the flush started, the pain came. It was more severe today than we can ever remember in five cycles. It lasted for 15 minutes. She had four rescues and visteral AND Benadryl for hives. She slept for a long time after the flush was done. We came back to RMH after and she ate black beans and rice and fried chicken she had a long nap this afternoon and was feeling well enough to go downstairs for dinner and sit with her friends and play. We are so happy this week is over and we are excited to be going to Ohio for the Thanksgiving holiday!

We have some good news. We knew the most recent MIBG scan showed the only spot of nueroblastoma left was the spot in her knee. This spot continues to lighten in intensity (good) but we didn’t know that the NB team, for treatment purposes, considers her to be “clear”. As far as the radiologist report, she still has faint uptake in the right knee, but the NB team feels there isn’t enough disease to radiate the site. This is wonderful news!

Even if she does completely “clear” on the MIBG, she would be considered NED which is No Evidence of Disease. It is always assumed that there are some NB cells present but undetected. This is why we continue to put her through 3F8 treatment. This protocol has proven to attack and kill NB cells and the hope is that Morgan’s immune system (white cells) will learn from the 3F8 to attack the NB cells on their own. She will continue to have scans every three months. She will also continue the 3F8 every three weeks until she develops Human Anti-Mouse Antibody (HAMA) at which time the scheduling will change but she will still need to receive the 3F8 treatment up to two years.

We are SO encouraged by the continual positive scan results. And we are so relieved that we have the opportunity to continue fighting this disease with 3F8 AND give her body the chance to recover from seven months of chemo. We are in a good place but still need your prayers. Please pray for a smooth transition from treatment week into the “other “ life we live and please pray for the NB left in her knee to completely resolve.

Please remember the other children fighting cancer. Please pray for kids in treatment and kids waiting for counts to come up. Please remember the Lea and Phillips families this holiday season.

Thanks for following us on our journey. We appreciate those guestbook messages. It really helps to know we have so much support!

11-18-09
Three down two to go! says Morgan during treament today. She cannot wait for this week to be over with and is soooo excited to go visit family in Ohio. Today was fairly normal as far as 3f8 goes and she slept for a few hours when we got back to RMH. Later on she felt well enough to make some cookies with Mom and the other girls and then decorate them.

11-17-09
Yesterday's 3F8 infusion went as planned. Morgan needed the usual two rescues of dilaudid but no hives. We had a late start, of course, since it was Monday, but we still managed to get out by 3pm.
Today we started earlier, two rescues and some visteral for hives that showed up after the infusion/flush was finished. We were headed back to RMH by noon. She is resting now, watching tv and asking for french fries! Two down, three to go.

11-16-09
Hello everyone, sorry for the delay but we have been trying keep little minds busy with fun and happy thoughts. We are here in NY at the hospital now waiting to begin treatment,which is not fun or happy. This is usually the worst day so lets keep our fingers crossed for minimal pain. For those of you who didn't see it Morgan was on Bay News 9 on Friday in a story about our friend Diana Coefield, here is the link to the story the video link is on that page. http://www.baynews9.com/content/36/2009/11/13/546606.html
Thank you everyone for checking in on us!

11-10-09
HAMA Negative! We are leaving this weekend to go back to NYC for another round of 3F8. Morgan's hip is feeling better. She is walking fine and comfortable. She has put in a few hours at school this week, but has been asking to be home as much as possible. She is already having anxiety about our return trip, so we are going to try not to talk about it too much until we leave. Thanks for the messages on the guestbook. We have been keeping busy with all the fun "normal" things at home. I will post more news later in the week.

11-6-09

Morgan is much better today. She went from not bearing any weight on her right leg Tuesday to limping, but walking assisted on Wednesday. She was walking fine on her own yesterday morning but was worn down by the afternoon, limping a little, favoring her right leg. She has some pain in her hip, but it seems to hurt only after lots of activity. She went to school for a few hours today and yesterday. We are hoping to have a “boring” time next week with school and playing at home. She has one clinic visit next week for her preventative antibiotic and also a hearing test (standard protocol after chemo). We will find results from the HAMA draw on Tuesday afternoon. Pray for HAMA negative, as always so we can leave on the 15^th for cycle#5 of 3F8. Ally is better, too. I thought she might have the flu because Ally just CAN’T sit still on a normal day and she didn’t move from the chair Tuesday night, complaining of a tummy ache. Thank goodness no other symptoms came up and she was back to school on Thursday.

Wednesday marked one year from the day we discovered Morgan had an abdominal mass the size of two grapefruits and subsequent cancer diagnosis. I wrote the following to try and capture some of our thoughts then and now:

It is hard to believe one year has passed since we heard the words "your daughter" and "cancer" for the first time in the same sentence. November 4^th, 2008 was not only our wedding anniversary, it was the day that changed our lives from, 'before we knew it could happen' into life after cancer diagnosis. The doctors who treated Morgan at the very beginning went above and beyond standard protocol to make sure Morgan’s symptoms were taken seriously, leaving no stone unturned. This is not the norm when it comes to diagnosing neuroblastoma, the symptoms are so vague, and can be attributed to so many other minor illnesses; we are very lucky to have such wonderful doctors in charge of her care then and now. So much has happened in the past year. Don't sweat the small stuff has been one of the biggest lessons learned. We have learned how to take each day for what we are given, and we have learned how very important it is to stop and listen. We listen to doctors trying to explain the difference between standard protocol and a clinical trial so that we can make a decision on how to move forward. We listen to laughter coming from the girl's room while they play. It's funny how, even when they are arguing with each other, there has never been a sweeter sound. That is life. They love, play, get angry, cry and then love again. The first few months of life after dx were harder than anything we've ever had to endure. And that was just for us as parents. As you've read from all the posts on this site it was much more difficult for Morgan and for Ally. We have learned to live with it, though, and we are so grateful that we have the opportunity. Our eyes have opened to a new world; one where kids with no hair are common and therefore aren’t really anything to take notice of, although bald really is beautiful! Little kids, in this new world, have 100 times the strength of their parents and learn so much so quickly that they even teach seasoned doctors a thing or two with every visit. We are still learning how to savor every moment, make each day more meaningful than the last. We are so thankful that a year later, we are learning to live with a switch that turns on and off with weeks of treatment and weeks without. Others haven't been so lucky. Our community has a new meaning to us now. From the very beginning, friends and family have held car washes, yard sales, candy sales, raffles and a huge benefit, just to help us make it through this very difficult time. When we are asked about a support system at home, we can say "they've got us covered", because friends, old and new, and family have come to our aid. The biggest worry in the beginning is "how" and we are still so graciously taken care of that I know we couldn't continue this without all of you. We feel like we are part of a bigger family, one that spans for miles and is made up of people we know well and people we’ve never had the pleasure to meet. We have also joined a family that no one ever wants to be a part of, but we are so glad to have them. Our support system in the hem/onc world is strong and keeps us going through the rough weeks of treatment and through the happy weeks of life. Every cancer family we meet becomes part of our family, much like you all think of Morgan as part of yours. When we hear of good scans, ending of treatments, we rejoice and celebrate with our new family. And when we hear not so good news, we are torn apart inside, wishing there was something WE could do. I keep you updated on other hem/onc children through this site so you can have a glimpse into that life with our other family. It has been a long year, most of which I could have gladly lived without, but the lessons learned, the friendships forged are what we move forward with today. Thank you for sharing this journey with us. Thank you for caring so much for our Sparklyflower.

11-3-09
The last update had the wrong date. We were home to trick-or-treat here in warm Florida! Ally and Morgan made out very good on candy Saturday night and even walked through a haunted house! Hope everyone had a good weekend.

This week has been good and bad so far. Morgan stayed home from school Monday to rest and Ally was back in class Monday morning. It was business as usual Monday afternoon with homework and playing Barbies until bedtime when Morgan started to complain about her leg hurting. The pain got worse this morning, so we went to clinic today and they decided that the pain is due to side effects of coming off of a week of 3f8, bone marrows on Friday (4 sites), gmcsf shot everyday last week (which can cause bone pain), and abruptly stopping neurontin (medicine used for residual pain). Of course, I was concerned enough to call the after hours doctor early this morning, and call Sloan, and bring her in for not one, but two doctor visits. Her scans were clear (except for the spot on the knee) less than a week ago, so everyone is in agreement that this is either related to the meds or some muscle strain. We are going to take it easy tomorrow and if the pain persists, I will take Morgan to All Children's on Thursday for some further testing. Please pray.

Other than the pain when she tries to walk, Morgan is feeling good. She is happy and ready to talk about Halloween, Thanksgiving, school or whatever else she may think up. We got to see our nurses Emily and Sharon, and PA Isaac from All Children's clinic today and also the staff from our Pediatrician's office. It was nice to see them all and very reassuring to have everyone focus on Morgan and help her feel better.

Ally is not feeling well tonight, she has a tummy ache and is extra tired. Please pray that she doesn't come down with something so she can continue to go to school and have fun with her friends.

Please check on Aisy, her parents have posted some new updates and she is doing much better (www.caringbridge.org/visit/aisylinbledsoe). We are so happy to hear about her progress, but we know she still needs as many prayers as we can give her. Also, please include Justin (hama positive this week), Gabby (treatment in texas) , Jensen (radiation this week), Ryan (in the PICU with complications), Ylaria (possible new spots on scans), and Chloe (scans tomorrow) in your prayers. These are just a few of the kids we know who are fighting this disease. It's not fair that any child should have to go through this, but these kids are stronger than any adult could ever dream of being and they deserve our prayers. Obviously, this has been a week full of many emotions. These families are our a part of our family and we love them so much.

Thanks for continuing to follow our journey. We still need your support and the messages, cards, phone calls and letters mean so much and help give us strength. Thank you.

10-30-09

Our week is done. Morgan finished her 5th day of 3F8 (cycle#4) after having bone marrow biopsies this morning. She had a very quiet infusion followed by a very painful flush. She still needed two breathing treatments but her cough is much better now and her runny nose is starting to clear up. She took a long nap when we returned to the RMH and then played with the volunteers in the playroom tonight. The wonderful Friday night volunteer crew gave her their full, undivided attention and Morgan couldn't be happier.

Ally dressed up in her Halloween costume today and went trick or treating around Sloan with the Pediatric child life crew. The kids stopped by the radiology department, mammography, and nuclear medicine just to name a few. Morgan was sleeping off her anesthesia at the time, so Ally filled a bag of candy for her sister, too.

We will have two weeks at home before we wil come back for cycle#5. We test for HAMA next week to see if we will make the return trip.

Please continue to pray for our friends, the Bledsoe family. Little Aisy is fighting so hard. She is surprising the doctors with her spirit and her drive. Her parents are the most wonderful, caring people and are doing everything they can to bring her out of this. She started a treatment at Cornell Hospital (across the street from Sloan) today. You can read more about her atwww.caringbridge.com/visit/aisylinbledsoe. She is an amazing girl and needs all the prayers we can give her.
Please also remember the other kid fighting cancer tonight. Somme are in treatment, some are not, but theses kids are all so strong and deserve our prayers.

We will be trick or treating tomorrow night, Ally as a vampiretta, and Morgan as a twisted witch. We hope you have a safe and Happy Halloween!

*******Urgent Prayer Request*******
Please pray for Aisy, she is undergoing surgery for a bowel obstruction tonight (10-27). If you would like to view her site and send messages: www.caringbridge.com/visit/aisylinbledsoe

10-27-09

Dr Modak e-mailed me with the final MIBG report from today--it shows further improvement--a good result! We are so excited to know that the spot in her knee continues to fade away; she is such a fighter and we are so proud of her!

We are hitting our stride with 3F8...so far this week has gone by quickly. Morgan did a wonderful job laying very still for her scan this morning. She listened to some music while she stayed still for almost an hour and a half! We had breakfast afterwards then headed upstairs to start the 3F8. She still gets nervous right before we start, but she was such a brave girl and buckled down to get the job done. She needed two rescues again and two breathing treatments. She still has the sniffles and it is aggravated by the antibody, that is why the breathing treatments are needed.

We were back to the RMH by 4, Morgan slept off her meds then we went downstairs for dinner and Halloween treats from the volunteers. Morgan is eating crackers and watching.....you guessed it...Hannah Montana! We are happy to see her feeling so good so soon after treatment.

10-26-09
Day#1 Cycle#4 is done. It was a long day as most Mondays are. We didn't get started until almost noon, and finished up in a couple of hours. She needed two rescues and a breathing treatment, but overall, the infusion went well and her pain only lasted for a short time. When we thought it was time to leave, though, Morgan's blood pressure was low, so we had to stay a while for her to get some extra fluids and some extra sleep. We headed back to the Ronald by 6pm. Some nice volunteers set up a Halloween Pizza party in the playroom, so we had a few slices then Morgan was ready to come back to the room. She is eating ice cream and watching Hannah Montana. She is feeling good. Tomorrow morning Morgan will have her MIBG scan. This is the big one that we saw so much improvement in last time. Please pray that she can lay still and be comfortable for the hour-long scan and that the doctors are quick to give us results as soon as they come through!

10-25-09
We made it safely to NYC. Thanks for all the kind messages in the guestbook. Our bags are unpacked, and A & M have already visited the playroom! Tonight we are going to enjoy a Halloween party hosted by the Candlelighters of NYC. It's a dress up party--Ally and Morgan are so excited--and it's a nice distraction for Morgan. She knows what is to come this week and really thinks about it often.

Everyone is good. We arrived to a dinner made by volunteers and a table full of friends. I love how we can pick back up with our New York family like we never left--it feels like coming home (our 2nd home) and it makes this journey so much easier. We are happy to be amongst our good friends.

Thanks for your support if this week, it's going to be a tough one, but we are ready.

10-21-09
HAMA NEGATIVE! We are so thankful to be able to receive another round of 3F8. We will head to NY this weekend, I'll let you know when we arrive!

10-18-09
We hope everyone had a good week/weekend! We have been busy as usual. Morgan is fighting a cough, we think from a combination of a cold and allergies, but she feels ok. We are almost at the end of cycle#2 of Accutane, thank goodness. Her skin is drying up more this cycle and she has been weepy (crying) through the day for no real reason, just because. She is such a strong girl to take these medicines and go through these treatments and still complete her schoolwork, play with her sister, and just be a kid while we are home.

We have one more week until we fly back to NYC for scans and 3F8. We will find out on Tuesday if she is HAMA negative (please pray for NEGATIVE), but we will fly up either way because she has scans. Clint and I are anxious to get the results from these scans. It has been three months since her last scans, so SCANXIETY is setting in.

Thank you for following us, I know my posts are farther in between, but we are learning to enjoy every moment of our home and our family while we are here. It has been so nice to be home, we are finally getting used to being here again!

We hope you have a great week. Please remember all of the children fighting cancer. Also, if you have the time, check out our how you can help page for information on the Band of Parents and how you can support Morgan and her fighting friends.

10-11-09
Has it been six days since my last update? Of course, since we have been so busy living "normal" life, time has escaped me. I am sorry for the delay, please remember: no news is good news! Morgan is feeling well. She missed a few days of school last week due to a cough (possible virus) that she contracted from her sister. Normal stuff. She has had a few other aches and pains, but so far this weekend, she is better.

I called Sloan to for some test results on Tuesday and Ronnie called back saying that Dr Kushner says Morgan's bone marrow is No Evidence of Disease!! This is great news!! She is on her way, her only spot is showing on her MIBG scan, in her knee.
We are on second cycle of Accutane and it is showing some minimal side affects. She is keeping up with the moisturizer and we are all being very patient while she finishes this round of cancer-fighting medicine.
Ally is doing well in school and has been such a big help around the house. The chores are endless, but that's how it's supposed to be and we are happy.

It has been nice to be present at school and meet some of the people who have helped us along since we started this journey almost a year ago. We are so humbled by all of the help we have received and it is nice to put faces to names and say "thank you" in person. We live in a great community.

On the treatment front, please pray for Aisy (caringbridge/aisylinbledsoe) who is having scans this week. We pray for NED (no evidence of disease) for Aisy so she can start receiving 3F8 in NY. Gabby (caringbridge/gabriellechiasson) is starting treatment at MD Anderson in Texas on Monday. Morgan, Justin (caringbridge/justingaudineer), Jaylin (caringbridge/joyfuljaylin) and many others are tesing for HAMA this week. We will get our results the Tuesday after next (10-20) to find out if our kids can continue to receive 3F8. Please pray for no HAMA for these kids. Also, please pray for the family of Pierce (caringbridge/piercephillips) who lost his battle with this horrible disease on Friday. His parents are truly wonderful people and we are sending them our strength this week.

Thank you for keeping up with us. This is a crazy journey we are on, but we are lucky to be here, happy, with our family together.
10-5-09
We are still enjoying home! Ally and Morgan got their flu shots today. We had to go to the regular pediatrician's office to get them, so Morgan got to see our nurse Linda and Dr Mark after a long year away while in treatment. As you can imagine, I was a little nervous bringing them in to a busy doctor's office with all of the flu going around but everyone was very nice and quickly got us in and out this morning before the regular (sick) traffic picked up.
Ally is back to school and Morgan will start back tomorrow. They are still readjusting to "school time" after being at the RMH for a week and staying up a little later at night.
Morgan is scheduled for clinic one day this week and one day next week. I'm not sure what to do with not knowing exactly what her blood counts are day to day, but it is nice to give her a break from it all!
Schoolwork and play are going to take up most of our time this week...as always, no news is good news. We hope you have a wonderful week!

10-3-09
Home! We made it home tonight and it is so good to be here. Morgan is feeling OK after her tough week of treatment. She and Ally are happy to be back in comfortable surroundings with all of their things. We are going to relax tomorrow and start back to work/school on Monday!
Thanks for all of the birthday cards/wishes. Morgan's nurses got me some REALLY yummy cupcakes yesterday morning and Clint and the girls got me a cake at the RMH last night, it was sweet!

10-1-09

Sparklyflower has one more day of 3f8 to go! She is napping now; we are back at the Ronald. She needed two rescues today and some visteral but she is comfortable now. The weather up here is beautiful; it is in the fifties today.

The kitchens are finally open at the Ronald and they are very nice. The RMH spent two months remodeling the kitchens with hardwood floors, brand new appliances and they are completely stocked with pots, pans, plates and utensils. We have had dinners for two nights in a row donated by volunteer organizations and it has been a huge help to have dinner ready after coming back from a day of treatment.

We have enjoyed visiting with our other familes up here; we missed them so much while we were home. It has also been nice to spend some time with three other NB families from the Tampa area. Justin and Jaylin are on 3F8 with us this week and little Bella just had her surgery Monday and is doing well.

Please keep our friend Gabby in your prayers and on your prayer lists. Gabby, her Mom and Dad and sisters really became a part of our family while we were both on extended-stays over the summer in NY. Gabby recently had some scans with unfavorable results. This is a beautiful family and my heart is with them as they look for treatment options outside of Sloan. (caringbridge/gabriellechiasson) Also, please pray for Aisy, she is inpatient in Orlando with low counts and a fever. (caringbridge/aisylinbledsoe)

We have great news to report for Jack (caringbridge/jackdemers), Ty (caringbridge/tymurray) and Brooklyn (caringbridge/brooklyndavison) who are all NED!!!!

9-28-09
Surprise! We have internet! The RMH came through and supplied us with a password today.

Mondays are always long at Sloan, but Morgan did an awesome job with her treatment! We got started around noon and we were back to the RMH by 5. She needed one pain rescue and oxygen for a little bit, but she worked through it like the SUPERSTAR that she is, we are so proud of her. We have some good news. Dr Cheung (Head of NB team @ Sloan) was on rounds today, so I asked him about HAMA and continuing 3F8 even though Morgan isn't clear. He said he needed to look at the most recent scans again, so he did, and when he came back in he said that the scans looked "almost NORMAL." So, of course, we wanted to know what exactly does that mean?!? He printed out the last three MIBG scans for us and the final report on the last scan--the spots are gone except for one. This is HUGE! The spots on her spine, hips, and knees are gone, except for one. Her last bone marrow biopsies and aspirates were clear! I can't explain the range of emotions we are feeling right now. We are obviously ecstatic about this WONDERFUL news and a little scared at what this means treatment-wise. This disease is very aggresive and we have seen relapse in so many of our close friends; we are overjoyed with this good news but not complacent with the facts of NB. For now, though, it means we continue on the same path we started, 3F8 every three weeks until HAMA or until she clears (which would be fabulous). The spot in her right knee will continue to be monitored with scans every three months. She is feeling good, and she is being seen by the best NB doctors in the world and for that we feel very blessed. We are so happy to report GREAT news and we are enjoying this feeling of having proof that our Sparklyflower is a fighter!

9-28-09
We hope everyone had a wonderful weekend! We are in NYC. Sorry for the delay in updates, we have had trouble with our internet service, and upon arrival at the RMH last night, we were told that changes have been made to the wifi service and we are now required to submit for a personal password which we won't get until probably Wednesday. We are using the wifi at Sloan to update now. Ally and Morgan had a great week at home and at school. They enjoyed playing at home and visiting with friends and family. It was so nice to be home.

This morning, Morgan had her fingerstick and we are waiting to be seen by the team and accessed to start 3F8. She is very nervous this morning as she remembers the affects from the last 3F8 dose. We are armed and ready with everything she needs to get her through this day. If she is feeling well enough this afternoon, we are going to take a stroll over to Central Park. The weather here is beautiful (almost too cold) and Morgan loves to go to the park.

Ally is with us, she is in the playroom hanging with friends and will be in to start some schoolwork after Morgan goes to sleep.

Thanks for checking in. I will update tomorrow (now that we have internet) and let you know how she is doing.

9-22-09

HAMA Negative!!! Morgan is eligible to receive another round of antibody treatment at Sloan. We are happy to hear this news and reluctant as well to return to NY this weekend after a WONDERFUL time had at home, but we are lucky to be on this treatment and so thankful for it to continue.

Please remember all the families in treatment this week and those having scans.

9-20-09

As we've said before--no news IS good news! We have really enjoyed being home these last two weeks. Morgan went to school four out of five days last week. She loves seeing her friends and her teachers everyday and her favorite subject is science. She is feeling good and having fun--just like it should be. She is enjoying being six years old. What a wonderful thing. We went to clinic Thursday for labs; her hemoglobin was low, not what I was expecting, so we will go back this week to double check and see if she needs a blood transfusion. Other than that, she is tolerating the Accutane and other meds well.

Yesterday, we held a bake sale with the Gaudineer family to benefit Cookies for Kids Cancer and it was a huge success! Thank you to everyone who sent in baked goods, made signs, helped set-up, take down, and everyone who helped to spread the word about the event and also Marco's Pizza in Plant City for the yummy pizza's! Thanks to the Plant City YMCA for letting us set up our bake sale at their front doors and also to the Plant City Chamber of Commerce for giving us a spot to set up for donations at the car show. It was a long day, but worth everyone's effort--we raised over $1500.00 to benefit neuroblastoma research!! Thank you, thank you, thank you to everyone involved in making this a huge success!

We are going to continue to enjoy this Florida heat for one more week, and be "normal" at home and school and work. We will fly back to NY this weekend. Thanks for checking in on us! I hope you have a great week!

9-15-09
Hope everyone's having a nice week so far. Morgan has settled into a nice schedule with school. We are trying to stay one step ahead of the flu bug, so lots of hand washing and hand sanitizer, but she really is getting accllimated to the increased activity, and she just loves learning and being with other kids her age. She is a big girl now and she wants me to drop her off in the car line in the morning (I haven't, yet) but once we walked past the office this morning, she not so politely told me that I could "go ahead and walk Ally to class". She is growing up so fast with all she has to go through, but it has been so nice to be home and just let her be a kid. Ally is doing well, she has two little mice in her class as pets. Oreo and Shadow are very popular in school this year, I think that's all she talks about for the first hour when she gets home from school!

We are loving home life, trying to find a balance between work and school and having lots of fun. Thank you for the guestbook messages, we still read them and love to hear the words of love and encouragement.

Thank you to everyone who has contributed to the candy sale at Walden Lake Early Learning Center. We are so lucky to have such wonderful friends supporting us from our hometown.

This weekend we are holding a bake sale at the Plant City YMCA, Saturday from 9a-4p. All kinds of baked goods and drinks on sale for donations. All money raised will go to Memorial Sloan Kettering Cancer Center for pediatric cancer research.

Please keep Morgan in your prayers and all the other kids in battle this week.

9-13-09
We hope everyone had a nice weekend. We have been hanging out at home. Morgan has been feeling good and having lots of fun with her sister everyday. She is really pushing herself to be active and have fun, but not too much, and she is sleeping well in her own bed at night. Ally is fighting a cough, but feels good otherwise. I don't have much else to report. Morgan has clinic in the morning for labs, and we are going to continue to enjoy being home!

9-9-09
We have been very busy and loving being home! Morgan had her first day of first grade yesterday, and she loved it! I didn't expect her to stay for the whole day, and I feel the need to stay close by for now, just incase, but she was ready for me to "go home" or to the preschool (where I used to work) and she would see me afterschool! I settled on volunteering in the library and then waiting in the parking lot--I think I have reached stalker status!! She really loves her class and settled in very well. When I asked her if I could have lunch with her she said, "you can if you want to, but you don't have to." After two months of literally being in the same room with eachother, I think SHE was ready for a break from ME, so it turns out I am the one with separation anxiety :)
Ally had a great day, too. I was glad to see her at lunchtime and we were able to go sit outside and have lunch together.
We are settling in, still unpacking and opening two months worth of mail, along with all the other things that were ignored while we were on our extended-stay in the city.
We received some great news from Dr Modak yesterday--The preliminary report for Morgan's MIBG scan is back- he says it is MUCH better and that he is very happy with the way the scan is looking! Of course we would have loved for her to be clear by now, but 'MUCH better' and 'very happy' are words that are music to our ears! We still haven't received the bone marrow aspirate results, but the biopsies are negative. We are so greatful that we are able to enjoy this time off, and enjoy our kids at home.
The last few weeks have brought some sad news for some of our friends. Please pray for the Lea family, their son Owen was a wonderful little boy and his Mom Karen is a compassionate person who gave support to so many of our NB friends. www.caringbridge.org/visit/owenlea
Also, please pray for the Phillips family. I never had the pleasure of meeting this family, but remember seeing little Pierce carried by his Mother up and down the halls when we were impatient. If you would like to send a message of support go to www.caringbridge.org/visit/piercephillips.
As always, please remember all of our friends in treatment: Gabby, meeting with the team next week; Aisy, having surgery this week; Megan, still in NY waiting to finish treatments. There are so many more.
We feel blessed to be so lucky with our girls, and we try to learn the lesson everyday...enjoy the small things...the little moments in time...don't take anything for granted.
Thank you for you, thank you for caring about our little family. We appreciate you more than you know.

9-5-09
HOME!!!!!
For the first time since July 3rd Morgan is in her own house! She's had ants in her pants all day, anxious and excited
it only took 10 minutes for Ally and Morgan to head back to thier rooms and start playing with thier Barbie dolls Emily went straight to the kitchen to cook a home cooked meal and I just took my "Do This-Do That" orders while trying to sit on the couch in between. We have three weeks at home before our next trip to NY and plan on making the very best of it. Morgan will get to start 1st grade and we will all be able to enjoy what so many of us take for granted, being home and together. Morgan had her MIBG scan this morning in NY right before we got in a cab driven by some guy who apperently hasn't been finding his way around NY for very long because he took a wrong turn, pulld over to look at a map, doubled back, pulled over again to look at a map then dropped us off at the airport less than 1 hour before our flight was due to leave the ground and we made our flight just in time. The little GPS map on the back seat of the yellow cab shows a trail of where you've been and by the time we got to JFK it looked like a etch-a-sketch! We should get the scan results some time this week and this will tell us if the 3f8 is doing its job. We will let you know the results when we find out. Thank you all so much for the prayers, messages and support, it helps us to remember we are not alone. And remember ya'll NO NEWS IS GOOD NEWS!

9-4-09
Where to begin- it has been a very long day for our Sparklyflower. We arrived at the PDH at 8am to get started when it was discovered that Morgan has a bacterial infection and low potassium levels. We waited for an isolation room....... started antibiotics.......... and she got a bolus of potassium. We finally started the 3F8 infusion around 3pm, making us late for her MIBG injection. We needed an MIBG injection because Dr Kushner decided on Wednesday afternoon that he wanted Morgan to have an MIBG scan BEFORE GOING HOME--this is a good thing, just not good when you've already bought your plane tickets. Anyway, we finished with the 3F8 infusion around 5, and we took Morgan (hives and all) downstairs to get her injection. We were sitting in the waiting room downstairs when a nice lady in a white coat came over to tell me that only two injection doses were delivered to the hospital today and Morgan was the third child to need one!! So we took her back upstairs to re-assess the hives and get an "official" release and took a very sleepy and very uncomfortable Sparklyflower back to the Ronald. Only to get the phone call that 'the injection has arrived' so back we go to the hospital to get it. So, after all of that was done, we got Morgan back to the Ronald (again) and comfortable in her bed. I only spell out all the happenings of today to describe an almost typical day in the world of pediatric cancer. There are SO MANY families who live this life everyday, and I can PROMISE you that as hectic and crazy as it is, we have to take it in stride and laugh at the situation. We are glad to live this life, glad for the opportunity to be with our family and glad for the options for our kids!

After we were back and settled it was time to call Jetblue. Morgan's MIBG scan cannot happen until 10am (after our flight has already left the ground) so we had to get a different flight. The first phone conversation was not very nice with them reminding me that they wave the fees "only once" for emergencies because they say, well, people don't have emergencies a lot. Right. They've never met any of my friends at the Ronald :)

So a second phone call landed me with a girl named Leyna who fought for us to get home ASAP and without having to mortgage my children in extra fees! (just kidding!) Thank you, thank you, thank you, Leyna for bringing a nice close to a very long day!

Please pray for tomorrow. Morgan's bone marrow biopsies were clear! (cancer-free!) And so they want to see what the MIBG shows to decide what other treatments we could add at this time. We would love to see clear scans--NED(No Evidence of Disease) or at least improvement, but we will take stable. Depending on the results from the scan and the bone marrow aspirates, she may start an additional treatment during the weeks she is off of 3F8.

Morgan feels better tonight, tomorrow should be better for her and she just can't wait to get home! We are going home tomorrow after the scan (hopefully we'll make this flight) and we should be able to enjoy three full weeks at home! And yes, I am holding my breath :)

9-2-09
We are finished with day#3 and back to the RMH. Morgan is sleeping. She had pain and hives again today, intense pain only lasting for about ten minutes and residual pain for a while longer. She is comfortable and happy to be back at the Ronald. I can't put into words how very proud we are of her for being able to endure this treatment, day after day all week long. She shows signs of anxiety, but never a word about not going back the next day. She knows why she has to have 3F8(as best as we can explain it) and has figured out a way to get through it each day. These kids are heros in every sense of the word. They are the world's strongest fighters yet they are happy and content to play the Wii or a game of Go Fish while they wait for treatments. Please remember Morgan and all of her cancer fighting friends as we all finish the rest of this week.

Ally is doing well, she really loves school this year and we are proud of her for staying the course and getting through this week while we are away. We know she is having fun and happy!

9-1-09
Day #2 is done--Morgan is sitting on the bed munching on goldfish and watching Disney channel. This morning she had a very intense 20 minutes in treatment, needing one rescue and a breathing treatment. We came back to the house this afternoon and she slept, then she was ready to go for a stroll (in the stroller) around the city. She walked to the elevator to go downstairs for dinner and made an effort to hang out with her friends for a while, but after she ate she was ready to come back upstairs. We are resting.

I want to say thank you to our nurses at Sloan. Our NP Letisha, 3F8 nurses Cat, Lea and Jess, and our Primary nurses Tara, Terri, Mary, and all the others are the BEST at what they do. They care about our Sparklyflower like she is their own. Every decision that is made for Morgan is for her benefit (as it should be) and they really take the time to get to know Morgan, her likes and dislikes, her personality. She is in such good hands when we are here, it really helps to be "extra" loved while we are so far away from home. We feel like these people are a part of our family, we are so lucky to have them :)

8-31-09
Day #1 Cycle #2 is complete. We arrived @ Sloan at 8am for a fingerstick and getting ready for treatments, and we waited, and waited, and waited to be seen by the team and get started. Around NOON, they sent us back to our room! This is a typical Monday scene in the PDH at Sloan, but it seemed extra long for us because Morgan had a lot of anxiety about the week. When the infusion was underway, the pain came. She had focused in her back, but kept her focus and made it through. When her heart rate went into the 190's, we asked her if she wanted pain medicine...she said no....but got some anyway. I think she doesn't like how it makes her feel, but I also think she was determined to get through and had made up her mind on how...medicine or no medicine. She slept for a while after all was done and she was ready to GO as soon as she woke up. She is sleeping now, a cool pack on her head for a headache, but otherwise feeling OK.

Ally is at school this week, having lots of fun. We miss her so much and can't wait to be home together as a family again. It's getting cold up here (cool if you ask my husband) we can't wait to get back to the warm weather and wide open spaces :)

8-29-09
All is well in NYC. We have been keeping busy with the playroom and other fun activities around the house.
Morgan finished RT on Friday (yay!) and the team helped her celebrate by giving her a chocolate rice krispies treat and a chocolate cupcake :)
She is feeling really good and eating well. It is pouring rain outside, so we will hang out in the playroom today.
Clint will be here Sunday night as we prepare for another week of 3F8.
Ally is going to stay home and go to school next week. This is a first for us, but I know she will be fine. She is having so much fun at school, I know the week will go by quickly for her.
Thanks for continuing to be there for us. We read the messages you send and love getting cards and letters in the mail.

8-26-09
We had a good day today. Morgan walked almost all the way to the hospital and almost all the way back! We are working on building up her strength while we have an easy treatment week. She played in the playroom and tonight we took out her new game: The Game of Life 'twists and turns'. She won it playing BINGO last night. It is really cool with an electronic spinner and credit cards....yikes!
Ally continues to enjoy school and she and Clint are spending some much needed quality time with eachother AND Junior!
Hope everyone's having a good week!

8-25-09
HAMA negative!! We heard back from Sloan today, and Morgan can have another round of 3F8! It is a strange dynamic that we live in, wanting our children to go through a treatment that causes so much pain, but the way I explain it to Morgan is this: the 3F8 teaches your body kill the cancer, so that is why she needs 3F8. We will start the daily shots tomorrow and continue them through next Friday. Morgan is feeling good, she did some walking today and at dinner tonight she decorated a bandana, a flower pot and played BINGO!

Ally had a great first day of third grade. She was most excited about the.....HOMEWORK......she gets to find five things from home that help describe her...but they all have to fit in a paper bag--how fun! She is very excited about this school year. It makes me feel better to know and love her teacher and her school! We miss her so much and can't wait to get home.

Thanks for the cards and messages! We are so lucky to have such a wonderful group of friends and family--we count on you so much, your support means the world to us!

8-24-09
Today was a typical Monday at Sloan today. We arrived at 8am and we headed back to RMH by 5:30pm! Morgan had RT today and in between needed blood today-- she hasn't had a blood transfusion for a while-- her hemoglobin was borderline low, but she was tired today so we gave her some to get her through the week. Her platelets are rising and her ANC is good. She is feeling better tonight, a little emotional, though. This is the longest trip we've had here, and I know she is just ready to come home. We are both ready to come home. The rest of this week should give us the chance to do some fun things in the city, like go to the park and maybe the museum. We did the HAMA draw today, so we will know tomorrow night if we will continue onto 3F8 next week.

On Sunday, Morgan and I were given tickets to the Mets vs Phillies game @ Citifield. It was really cool, we had great seats, eight rows up from the field, in between home and first. It was a warm day, so we didn't last outside for long, but it was a fun experience for us!

Clint and Ally are home and getting ready for Ally's first day of third grade! She met her teacher and is so excited about how many books there are in her classroom!

Have a great week!

8-21-09

Red Velvet Cake was on the menu for Sparklyflower today! She loves watching food network, and all that cooking makes her hungry! We watched the chefs make it on tv, then we used it as insentive to get Morgan up and walking to the corner deli for a slice of her own red velvet cake :)
Morgan had to have bone marrow biopsies done today, so she's taking it easy. Her eye appointment was fine. She has "better than perfect vision" according to the doctor!
We are going to spend time together tomorrow and Ally and Clint are headed home Sunday. I'm so sad to miss Ally's first day of third grade, but I know she will do just fine with her Daddy taking her in. If you see her next week at school, give her a big hug for me!
We hope you have a wonderful weekend!

8-20-09

*Check out the pictures page for our new 'Kid of the Week' : Jensen Byrd--he is one tough kid!

Hello All! Morgan is having a good day today. She started radiation this morning and is handling it very well. Her counts are on the rise, so she doesn't have clinic again until Monday. She has an opthamology appt this afternoon for some vision issues. We are anxious to see the results from that. Other than those appts, we are enjoying spending time together before Clint and Ally go home on Sunday.

I feel like it is important to say that we appreciate any and all positive thoughts and advice from our friends and family. That being said, we do not condone and will not tolerate insensitive remarks toward ourselves and our family. Please respect our choices and send positive thoughts, positive suggestions and postive energy our way. We are at the BEST hospital for NB in THE WORLD, and Morgan is getting better everyday. We love our children more than anything in the world and we know that our friends and family know that to be true. Unfotunately, we have had to change our guestbook to approve each new entry as they come in. This will take more time for the entries to post, but we gain so much love and support from each entry that is written that we feel it is important to continue the guestbook.

Thanks for continuing to check on our girl, and our family. We appreciate you and your love and support!

8-18-09
Just a quick update- It has been a lazy day for Sparklyflower. We stayed around the house today, taking care of some chores and playing. Clint took Ally to the Museum of Natural History with camp today. They really enjoyed it and we are going to try and go back the next trip up.

Although the day was quiet for us, some of our friends have had a lot going on. One of our rockstar friends was going through 3F8 treatments today and had a very bad reaction. He is fine now, but the doctors have decided to take him off of that protocol permanantly. We are thinking of his family tonight, and sending them strength to get through the night, and start fresh tomorrow seeking out the best treatment road to take with thier HERO son.

Another one of our friends, Ylaria (she was kid of the week last week) received scan results of ALL CLEAR after being the FIRST neuroblastoma patient to go through NK Cell therapy. She rec'd high dose chemo, followed by an infusion of her mother's white t cells and then a week of 3F8. Go Ylaria! We are so proud of you and your family for taking the first steps towards this very promising treatment!

Lots of news today, we are excited, scared, a mix of emotions for ourselves and our friends, but this is EVERYDAY life in the world of pediatric cancer. Please remember Morgan and ALL of her friends in treatment and at home this week.

8-17-09
Thanks to everyone who participated in the fundraiser for Morgan this weekend. It looks like it was a big success! We are humbled by the kindness of so many friends and family. Thank you for showing your support for our girl!

Sparklyflower is feeling good. She hasn't had any more pain this weekend, and she has been more active everyday. This morning we went to clinic early to get counts checked (everything looks good) and then to radiation for simulation and set-up. She had a CT scan and then they marked her abdomen for targets to line up the machine. She actually had to get five tiny tattoos so that they can line her up on the table exactly the same way each time. Of course, her Daddy said, if she has to get a tattoo, let get a good one! But her Momma doesn't think so, so she has three tiny marks going down the middle of her tummy and one on each side of her tummy. We put her Emla (numbing) cream on before the tattoos were made, but that didn't stop her from being very loud and very nervous. She got through it, though, and we are so glad that part is over. At this point, they are going to call me this afternoon with a start date (between tomorrow and Thursday) and Morgan will recieve 14 total radiation treatments, hopefully two per day.
After the radiation set-up, we had to head back to clinic for a Pentamadine infusion. Since Morgan is immunosuppressed, she has to have antibiotics twice a month to safeguard her from certain infections. When the clinic day was finally done, we came back to RMH and Morgan joined her friends on the terrace for water fun with sprinklers.
Ally woke up a little stuffy this morning, so she and Clint decided to rest up and stay at the RMH, but this afternoon she is feeling better and out playing in the water on the terrace.
Thanks for checking in on us! Have a wonderful week!

8-15-09
Thanks for being so patient with the updates--we were all so exhausted from the events of this week that we were asleep as soon as our heads hit our pillows! We are so glad this week is finally over! Morgan handled the 3F8 treatments like the superstar that she is. Each day the pain was shorter in duration, and she was able to communicate with us and get into her "zone" to get through each day. I am so happy to report that the residual pain in her feet and hands is gone this morning and she is feeling good! We have at least two weeks of no pain, no hives and no 3F8!
The RMH has weekend activities on occasion and this morning we went on a trip to preview the movie "Shortz" before it comes out next week. Both Ally and Morgan loved the movie and thought it was very funny!
We are going to relax for the rest of this weekend and catch up on our chores that were passed up during this crazy week :)

Monday Morgan will have radiation set-up and then start radiation on Thursday. She will have two radiation treatments per day (except weekends) for seven days.

Clint's cousin sent us some videos of the benefit for Morgan and it looks so wonderful! I'm so sorry it rained but it looked like everyone was having a great time! Hopefully the rains will stay away today and tomorrow for the rest of the party.Thank you so much to everyone who helped organize, set up and work the event, and to everyone who showed up to support our sweet girl! We are blown away by the magnitude of this event--thank you!

8-12-09
Today was a little better for Morgan. She woke up this morning and said, "lets go get the 3F8 overwith!" She still had pain in her feet and back, but it didn't last as long today. She needed one pain rescue and visteral for swelling, but she is becoming better able to handle the pain and ask for what she needs (pain meds, heat packs, cold packs). She is considered to be an "older" child with NB and the older kids have trouble with residual pain, so we are keeping her on oral pain meds at the ronald this week to keep her comfortable. According to some of the other parents, she should feel fine by this weekend and we are all looking forward to that! Two more days to go!

We are very excited about the benefit planned for Morgan this weekend. We have posted the flyer on the 'pictures' page and on the 'how you can help' page. It will be such a fun event that we are so sorry we will miss. Thank you to everyone who put time and effort into helping our Sparklyflower!

The event including a schedule of events is advertised here:
9-4-09

9-4-09

Where to begin- it has been a very long day for our Sparklyflower. We arrived at the PDH at 8am to get started when it was discovered that Morgan has a bacterial infection and low potassium levels. We waited for an isolation room....... started antibiotics.......... and she got a bolus of potassium. We finally started the 3F8 infusion around 3pm, making us late for her MIBG injection. We needed an MIBG injection because Dr Kushner decided on Wednesday afternoon that he wanted Morgan to have an MIBG scan BEFORE GOING HOME--this is a good thing, just not good when you've already bought your plane tickets. Anyway, we finished with the 3F8 infusion around 5, and we took Morgan (hives and all) downstairs to get her injection. We were sitting in the waiting room downstairs when a nice lady in a white coat came over to tell me that only two injection doses were delivered to the hospital today and Morgan was the third child to need one!! So we took her back upstairs to re-assess the hives and get an "official" release and took a very sleepy and very uncomfortable Sparklyflower back to the Ronald. Only to get the phone call that 'the injection has arrived' so back we go to the hospital to get it. So, after all of that was done, we got Morgan back to the Ronald (again) and comfortable in her bed. I only spell out all the happenings of today to describe an almost typical day in the world of pediatric cancer. There are SO MANY families who live this life everyday, and I can PROMISE you that as hectic and crazy as it is, we have to take it in stride and laugh at the situation. We are glad to live this life, glad for the opportunity to be with our family and glad for the options for our kids!After we were back and settled it was time to call Jetblue. Morgan's MIBG scan cannot happen until 10am (after our flight has already left the ground) so we had to get a different flight. The first phone conversation was not very nice with them reminding me that they wave the fees "only once" for emergencies because they say, well, people don't have emergencies a lot. Right. They've never met any of my friends at the Ronald :)So a second phone call landed me with a girl named Leyna who fought for us to get home ASAP and without having to mortgage my children in extra fees! (just kidding!) Thank you, thank you, thank you, Leyna for bringing a nice close to a very long day!Please pray for tomorrow. Morgan's bone marrow biopsies were clear! (cancer-free!) And so they want to see what the MIBG shows to decide what other treatments we could add at this time. We would love to see clear scans--NED(No Evidence of Disease) or at least improvement, but we will take stable. Depending on the results from the scan and the bone marrow aspirates, she may start an additional treatment during the weeks she is off of 3F8.Morgan feels better tonight, tomorrow should be better for her and she just can't wait to get home! We are going home tomorrow after the scan (hopefully we'll make this flight) and we should be able to enjoy three full weeks at home! And yes, I am holding my breath :)9-2-09We are finished with day#3 and back to the RMH. Morgan is sleeping. She had pain and hives again today, intense pain only lasting for about ten minutes and residual pain for a while longer. She is comfortable and happy to be back at the Ronald. I can't put into words how very proud we are of her for being able to endure this treatment, day after day all week long. She shows signs of anxiety, but never a word about not going back the next day. She knows why she has to have 3F8(as best as we can explain it) and has figured out a way to get through it each day. These kids are heros in every sense of the word. They are the world's strongest fighters yet they are happy and content to play the Wii or a game of Go Fish while they wait for treatments. Please remember Morgan and all of her cancer fighting friends as we all finish the rest of this week.Ally is doing well, she really loves school this year and we are proud of her for staying the course and getting through this week while we are away. We know she is having fun and happy!9-1-09Day #2 is done--Morgan is sitting on the bed munching on goldfish and watching Disney channel. This morning she had a very intense 20 minutes in treatment, needing one rescue and a breathing treatment. We came back to the house this afternoon and she slept, then she was ready to go for a stroll (in the stroller) around the city. She walked to the elevator to go downstairs for dinner and made an effort to hang out with her friends for a while, but after she ate she was ready to come back upstairs. We are resting.I want to say thank you to our nurses at Sloan. Our NP Letisha, 3F8 nurses Cat, Lea and Jess, and our Primary nurses Tara, Terri, Mary, and all the others are the BEST at what they do. They care about our Sparklyflower like she is their own. Every decision that is made for Morgan is for her benefit (as it should be) and they really take the time to get to know Morgan, her likes and dislikes, her personality. She is in such good hands when we are here, it really helps to be "extra" loved while we are so far away from home. We feel like these people are a part of our family, we are so lucky to have them :) 8-31-09Day #1 Cycle #2 is complete. We arrived @ Sloan at 8am for a fingerstick and getting ready for treatments, and we waited, and waited, and waited to be seen by the team and get started. Around NOON, they sent us back to our room! This is a typical Monday scene in the PDH at Sloan, but it seemed extra long for us because Morgan had a lot of anxiety about the week. When the infusion was underway, the pain came. She had focused in her back, but kept her focus and made it through. When her heart rate went into the 190's, we asked her if she wanted pain medicine...she said no....but got some anyway. I think she doesn't like how it makes her feel, but I also think she was determined to get through and had made up her mind on how...medicine or no medicine. She slept for a while after all was done and she was ready to GO as soon as she woke up. She is sleeping now, a cool pack on her head for a headache, but otherwise feeling OK. Ally is at school this week, having lots of fun. We miss her so much and can't wait to be home together as a family again. It's getting cold up here (cool if you ask my husband) we can't wait to get back to the warm weather and wide open spaces :) 8-29-09All is well in NYC. We have been keeping busy with the playroom and other fun activities around the house.Morgan finished RT on Friday (yay!) and the team helped her celebrate by giving her a chocolate rice krispies treat and a chocolate cupcake :)She is feeling really good and eating well. It is pouring rain outside, so we will hang out in the playroom today. Clint will be here Sunday night as we prepare for another week of 3F8.Ally is going to stay home and go to school next week. This is a first for us, but I know she will be fine. She is having so much fun at school, I know the week will go by quickly for her.Thanks for continuing to be there for us. We read the messages you send and love getting cards and letters in the mail.8-26-09We had a good day today. Morgan walked almost all the way to the hospital and almost all the way back! We are working on building up her strength while we have an easy treatment week. She played in the playroom and tonight we took out her new game: The Game of Life 'twists and turns'. She won it playing BINGO last night. It is really cool with an electronic spinner and credit cards....yikes!Ally continues to enjoy school and she and Clint are spending some much needed quality time with eachother AND Junior!Hope everyone's having a good week!8-25-09HAMA negative!! We heard back from Sloan today, and Morgan can have another round of 3F8! It is a strange dynamic that we live in, wanting our children to go through a treatment that causes so much pain, but the way I explain it to Morgan is this: the 3F8 teaches your body kill the cancer, so that is why she needs 3F8. We will start the daily shots tomorrow and continue them through next Friday. Morgan is feeling good, she did some walking today and at dinner tonight she decorated a bandana, a flower pot and played BINGO! Ally had a great first day of third grade. She was most excited about the.....HOMEWORK......she gets to find five things from home that help describe her...but they all have to fit in a paper bag--how fun! She is very excited about this school year. It makes me feel better to know and love her teacher and her school! We miss her so much and can't wait to get home.Thanks for the cards and messages! We are so lucky to have such a wonderful group of friends and family--we count on you so much, your support means the world to us!8-24-09Today was a typical Monday at Sloan today. We arrived at 8am and we headed back to RMH by 5:30pm! Morgan had RT today and in between needed blood today-- she hasn't had a blood transfusion for a while-- her hemoglobin was borderline low, but she was tired today so we gave her some to get her through the week. Her platelets are rising and her ANC is good. She is feeling better tonight, a little emotional, though. This is the longest trip we've had here, and I know she is just ready to come home. We are both ready to come home. The rest of this week should give us the chance to do some fun things in the city, like go to the park and maybe the museum. We did the HAMA draw today, so we will know tomorrow night if we will continue onto 3F8 next week.On Sunday, Morgan and I were given tickets to the Mets vs Phillies game @ Citifield. It was really cool, we had great seats, eight rows up from the field, in between home and first. It was a warm day, so we didn't last outside for long, but it was a fun experience for us! Clint and Ally are home and getting ready for Ally's first day of third grade! She met her teacher and is so excited about how many books there are in her classroom! Have a great week! 8-21-09Red Velvet Cake was on the menu for Sparklyflower today! She loves watching food network, and all that cooking makes her hungry! We watched the chefs make it on tv, then we used it as insentive to get Morgan up and walking to the corner deli for a slice of her own red velvet cake :)Morgan had to have bone marrow biopsies done today, so she's taking it easy. Her eye appointment was fine. She has "better than perfect vision" according to the doctor! We are going to spend time together tomorrow and Ally and Clint are headed home Sunday. I'm so sad to miss Ally's first day of third grade, but I know she will do just fine with her Daddy taking her in. If you see her next week at school, give her a big hug for me!We hope you have a wonderful weekend! 8-20-09*Check out the pictures page for our new 'Kid of the Week' : Jensen Byrd--he is one tough kid!Hello All! Morgan is having a good day today. She started radiation this morning and is handling it very well. Her counts are on the rise, so she doesn't have clinic again until Monday. She has an opthamology appt this afternoon for some vision issues. We are anxious to see the results from that. Other than those appts, we are enjoying spending time together before Clint and Ally go home on Sunday. I feel like it is important to say that we appreciate any and all positive thoughts and advice from our friends and family. That being said, we do not condone and will not tolerate insensitive remarks toward ourselves and our family. Please respect our choices and send positive thoughts, positive suggestions and postive energy our way. We are at the BEST hospital for NB in THE WORLD, and Morgan is getting better everyday. We love our children more than anything in the world and we know that our friends and family know that to be true. Unfotunately, we have had to change our guestbook to approve each new entry as they come in. This will take more time for the entries to post, but we gain so much love and support from each entry that is written that we feel it is important to continue the guestbook.Thanks for continuing to check on our girl, and our family. We appreciate you and your love and support! 8-18-09Just a quick update- It has been a lazy day for Sparklyflower. We stayed around the house today, taking care of some chores and playing. Clint took Ally to the Museum of Natural History with camp today. They really enjoyed it and we are going to try and go back the next trip up.Although the day was quiet for us, some of our friends have had a lot going on. One of our rockstar friends was going through 3F8 treatments today and had a very bad reaction. He is fine now, but the doctors have decided to take him off of that protocol permanantly. We are thinking of his family tonight, and sending them strength to get through the night, and start fresh tomorrow seeking out the best treatment road to take with thier HERO son. Another one of our friends, Ylaria (she was kid of the week last week) received scan results of ALL CLEAR after being the FIRST neuroblastoma patient to go through NK Cell therapy. She rec'd high dose chemo, followed by an infusion of her mother's white t cells and then a week of 3F8. Go Ylaria! We are so proud of you and your family for taking the first steps towards this very promising treatment!Lots of news today, we are excited, scared, a mix of emotions for ourselves and our friends, but this is EVERYDAY life in the world of pediatric cancer. Please remember Morgan and ALL of her friends in treatment and at home this week.8-17-09Thanks to everyone who participated in the fundraiser for Morgan this weekend. It looks like it was a big success! We are humbled by the kindness of so many friends and family. Thank you for showing your support for our girl!Sparklyflower is feeling good. She hasn't had any more pain this weekend, and she has been more active everyday. This morning we went to clinic early to get counts checked (everything looks good) and then to radiation for simulation and set-up. She had a CT scan and then they marked her abdomen for targets to line up the machine. She actually had to get five tiny tattoos so that they can line her up on the table exactly the same way each time. Of course, her Daddy said, if she has to get a tattoo, let get a good one! But her Momma doesn't think so, so she has three tiny marks going down the middle of her tummy and one on each side of her tummy. We put her Emla (numbing) cream on before the tattoos were made, but that didn't stop her from being very loud and very nervous. She got through it, though, and we are so glad that part is over. At this point, they are going to call me this afternoon with a start date (between tomorrow and Thursday) and Morgan will recieve 14 total radiation treatments, hopefully two per day. After the radiation set-up, we had to head back to clinic for a Pentamadine infusion. Since Morgan is immunosuppressed, she has to have antibiotics twice a month to safeguard her from certain infections. When the clinic day was finally done, we came back to RMH and Morgan joined her friends on the terrace for water fun with sprinklers. Ally woke up a little stuffy this morning, so she and Clint decided to rest up and stay at the RMH, but this afternoon she is feeling better and out playing in the water on the terrace.Thanks for checking in on us! Have a wonderful week! 8-15-09Thanks for being so patient with the updates--we were all so exhausted from the events of this week that we were asleep as soon as our heads hit our pillows! We are so glad this week is finally over! Morgan handled the 3F8 treatments like the superstar that she is. Each day the pain was shorter in duration, and she was able to communicate with us and get into her "zone" to get through each day. I am so happy to report that the residual pain in her feet and hands is gone this morning and she is feeling good! We have at least two weeks of no pain, no hives and no 3F8! The RMH has weekend activities on occasion and this morning we went on a trip to preview the movie "Shortz" before it comes out next week. Both Ally and Morgan loved the movie and thought it was very funny! We are going to relax for the rest of this weekend and catch up on our chores that were passed up during this crazy week :)Monday Morgan will have radiation set-up and then start radiation on Thursday. She will have two radiation treatments per day (except weekends) for seven days.Clint's cousin sent us some videos of the benefit for Morgan and it looks so wonderful! I'm so sorry it rained but it looked like everyone was having a great time! Hopefully the rains will stay away today and tomorrow for the rest of the party.Thank you so much to everyone who helped organize, set up and work the event, and to everyone who showed up to support our sweet girl! We are blown away by the magnitude of this event--thank you!8-12-09Today was a little better for Morgan. She woke up this morning and said, "lets go get the 3F8 overwith!" She still had pain in her feet and back, but it didn't last as long today. She needed one pain rescue and visteral for swelling, but she is becoming better able to handle the pain and ask for what she needs (pain meds, heat packs, cold packs). She is considered to be an "older" child with NB and the older kids have trouble with residual pain, so we are keeping her on oral pain meds at the ronald this week to keep her comfortable. According to some of the other parents, she should feel fine by this weekend and we are all looking forward to that! Two more days to go!We are very excited about the benefit planned for Morgan this weekend. We have posted the flyer on the 'pictures' page and on the 'how you can help' page. It will be such a fun event that we are so sorry we will miss. Thank you to everyone who put time and effort into helping our Sparklyflower!The event including a schedule of events is advertised here:http://plantcity2.tbo.com/content/2009/aug/12/pc-grab-a-burger-help-a-family/

8-10-09
Day #1 of 3F8 is done! Morgan had a very long day today that started at 8am. She had to get a fingerstick (not happy) and then port accessed and pre-meds started. She doesn't mind getting her port accessed as long as we put on the emla (numbing cream) at least a half hour beforehand. We started around 11 and about 10 minutes after the infusion started, the pain came. She had pain focused in her back and feet. She needed two half rescues of pain meds and a nebulizer treatment to help keep her oxygen levels up. She also needed visteral for some hives that popped up after the infusion was done. She slept for a LONG time when the flush finished and then she started to show a fever in the afternoon. Anybody who has a central line has to have blood cultures drawn and iv antibiotics given with a fever over 100.5. Thank goodness she isn't neutropenic (low counts) so she didn't have to be admitted. They kept her for observation in the day hospital until 5, and sent us home with rescue pain meds and antihistamines with the instructions to call if the fevers goes over 101.
Tonight she is starting to feel better. She sat up and had some ziti with butter and parmesan (my little chef) and some ice cream and chocolate sauce. She still had some residual pain in her feet, but hopefully that will lessen with each day.
Morgan will repeat this treatment everyday for the rest of this week and then have two weeks off for radiation. The nurses and some of the other parents have said that Monday is the hardest and it gets easier as the week goes on.
We are so proud of her courage and her strength. She did such a great job letting us know what was happening with her and what she needed.
We are all ready for an early bedtime tonight. I will update with more tomorrow!

8-8-09

Morgan had great counts at clinic Friday morning, so we decided to make the trip over to Ohio for the weekend. We did this for Easter and we all returned to NYC refreshed, so after five weeks in the city, we were ready for some fresh air!
Morgan is feeling great! She has been eating up a storm, and getting around in Aunt Sally's kitchen, making fruit salad, pumpkin and apple pie, and tonight she wants to make a sausage quiche and pigs in a blanket. Ally is taking advantage of the wide open spaces and running her little heart out!
Clint and I are so blessed to have a place to go to, away from NYC, when we can't make the trip all the way home. The peace and quiet of our kids laughing and playing outside and enjoying each other is music to our ears. We have updated the pictures, in the recent pics album of our little bakers, and we are so happy to have the chance to be here. We are going back to NYC tomorrow afternoon, and we will prepare for the next leg of our journey--3F8. Until then, hope you have a great weekend!

8-5-09
Thanks for waiting for the update, we have been busy the past few days.
We met with Dr Modak today. Morgan is scheduled to start 3F8 on Monday. We will give her GMCSF injections everyday starting today, along with some other meds to help with residual pain. 3F8 is usually given on an outpatient basis for one week. Morgan will be on the morning shift. She will receive pre-meds for pain as well as anti-histamines as the 3F8 can cause hives and swelling. Then the infusion followed by a flush. After the treatment she will probably sleep off the medicines and then be sent back to RMH for the night. This "cold" 3F8 is different from the last dose she received because there is no radiation attached. You can read more about 3F8 athttp://www.mskcc.org/mskcc/html/3215.cfm.
We are so lucky to have this treatment for Morgan, it is very good at clearing bone marrow disease and some kids have had luck with clearing disease in the bone as well. We also received the results from her last bone marrow biopsies and they are still positive for NB, so this is definantly important to start now.
After the week of 3F8, Morgan will complete two weeks (14 rounds total) of radiation to the tumor bed, followed by another week of 3F8.
During Morgan's radiation, Clint and Ally are going to fly home for work and school. It's nice to have a schedule, even though we know things could change.
Ally did a great job performing in the talent show at the Pediatric Day Hospital playroom. She performed a dance with her friends Sophie and Belen to the Michael Jackson song, "Billie Jean". We watched guitar players, an opera singer and we even heard a song by Dr Cheung. The girls had a great time and Morgan and I enjoyed watching them and all the other great talents.
Last night, during dinner on the terrace at RMH, Paula Abdul stopped by to say hello to the kids. Ally was so excited and had her picture taken with Paula and also got her autograph. All the girls were screaming and hugging her, it was really very cute! Morgan wasn't so interested, she just stayed at her table and wrote in her journal. (she would rather meet Hannah Montana, she said) So, I guess Paula should have been honored to be in the presence of Sparklyflower, instead :o)
Our friend Aisy is back in NYC, she was scheduled for surgery again on Wednesday but it was cancelled because of fever. Please keep her in your thoughts and prayers.

Also, check out the pictures page for some pics of Ally and Paula, and our movie night with Aisy's big brother Jaspar.

Thanks for checking in again and again, I will try to keep up with the updates better!

8-2-09
Home Sweet Home--or as close as we can get right now! Morgan was discharged last night after a second cbc showed her ANC was 800. We are laying low at the RMH today, it is pouring with rain outside and has been for most of the day. She feels good, still a little swollen, but resting comfortably and enjoying being out of the hospital!
We will go to clinic tomorrow for Morgan to get counts checked and hopefully an idea of what the plan is for the next few weeks.
On Tuesday, Ally will perform a dance routine at the talent show with her friends Sophie and Belen in the playroom at the day hospital. I'm sure the camera police will be out in full force, but we'll try to get a few pics :)

8-1-09
We have an ANC!
Morgan woke up this morning to an ANC of 400!
Not enough for a discharge from the hospital, but enough to start feeling better. Her WBC count is up to 0.7, so we expect for her to be discharged by tomorrow. The doctor gave her a day pass to come back to RMH for the afternoon. She was so happy to have some Delizia's pizza and ziti :)
Ally and Morgan have been playing and watching movies, I know they missed each other so much. Morgan's face is still swollen, but it's better today. We're so happy to have some news to report, hopefully on Monday we will get some news on the next phase of treatment. Thanks for keeping up with our girl!

7-24-09
Happy Friday!
Morgan received her stem cells Wednesday afternoon and everything went as planned. She is still having jaw pain and her gums are irritated. All of the scans and other tests have come back negative so we are assuming the pain and swelling is a reaction to having low (no) counts for over two weeks. Hopefully her stem cells will take hold quickly and help to heal her mouth. We don't expect any WBC's until late next week at the earliest, as there is no timetable for this sort of thing. Our private room was nice while it lasted, but since we aren't required to have one, we got the boot this morning and we are now residing in rm 910 B. We don't have a room mate yet, but I'm sure we will soon.
Thanks for the messages, we will keep you updated as much as possible during our hospital stay!
Update: The Kid of The Week on our picture page has been updated, please check it out. Ylaria is the first NB patient to recive NK Cells taken from her mother. On July 17th Ylaria made history by courageously helping to pave the way to a cure for our precious kids!

7-22-09
One of the phrases we use in the oncology world is "one day at a time". We can never really plan for anything. Morgan's cheek is still swollen and her pain has increased. The CT scan was clear, so they are assuming that this is an infection. Since she has had no counts for two weeks and this infection seems to be getting worse, Dr Modak thinks it would be best to give Mo her stem cells back today. This means she will not receive the second round of hot 3F8. I am relieved that she won't have to wait another week for her stem cells while fighting infection. On the other hand, we are discouraged that she won't receive another round of the treatment that is ridding her body of NB.
We are going to increase her morphine to help better manage her pain and the docs are going to switch around some of her antibiotics (she's on three right now). She is sleeping (thanks to the benadryl) while she gets platelets this morning and she should receive her stem cells back this afternoon. After that, it's up to her bone marrow as to when it wakes up and she starts to have WBC's again.
We are not sure what the next step will be; possibly cold 3F8 to try and fight of the remaining NB while giving her body a chance to recover more from the chemo she's had over the last eight months.
he care packages and cards and phone calls. We rely on your support while we navigate these unsteady waters. Thanks for keeping up with us!

7-21-09
It was a long night again last night. It's hard to sleep in a hospital because it's noisy all night long, someone comes in every two hours to hang meds, take blood pressure, make you go potty--all necessary but impossible to sleep through. On top of all that last night, Morgan's mouth started to hurt, so bad that she couldn't sleep. She needed two morphine rescues during the night so this morning the NP put her on a morphine pca. This allows her to recieve small doses throughout the day, and a button for her to use if she needs a "rescue" dose. The pain started with her teeth and the inside of her cheeks and gums, but her cheeks are starting to get swollen tonight. We are going to have a CT to rule out another infection. Hopefully we will figure out the cause of this tonight.
She is still able to eat and drink, thank goodness.
Clinton is at a meeting tonight with the Band of Parents and Dr Cheung, head oncologist of the neuroblastoma team at Sloan. Dr Cheung is expected to talk about what is new in our treatment world and what new research he will be conducting. The Band of Parents is a group made up of parents of children who have been dx with NB. Everyone works on a volunteer basis and along with sharing information, the BOP raises money that goes directly to Dr Cheung to further NB research. We are so glad to be able to listen in on this meeting and be informed about treatments available to Morgan in the future.
Thanks for checking in, I'll update with CT scan results as soon as I get them.

7-19-09
It's been a lazy Sunday in room 937 @ Sloan. Morgan and Ally watched movies all day. Not much has changed, we are staring at the walls (and the tv) waiting on time to go by. Morgan can only order from the low microbial menu at the hospital because of her low counts, so she has run through the menu and is now bored with it! So we are trying to get creative to keep her eating well during this stay. Her recent favorites are rice krispies treats, cheez it's, and mashed potatoes with sour cream and butter. (Hope I'm not making you hungry :o)
Ally enjoyed her down time and is now excited to start another week at camp.
Hope you all have a great week!

7-18-09
Sparklyflower had a good day. She got the IV taken out of her hand and her fever stayed away. She settling in to "hospital mode" and because she still has a runny nose, she is on isolation and isn't allowed to go to the playroom. Isolation status does allow her a private room, though, so Ally came to visit today. They played together and it brightened Morgan's spirits to play with her sister.
The attending doctor says the blood cultures are negative for infection, so we are hoping that is the last we hear about that subject! Her WBC's are steady at 0.1 (still neutropenic), she will probably need blood and platelets tomorrow.
Thanks for all the support you are sending our way. We are trying to keep Ally and Morgan busy and happy during our extended stay in the city.
Please pray for the children who are fighting cancer. Before Morgan's dx, I never realized just how many children suffer. These kids are Super Heros and deserve so much better than what this disease puts them through. Please remember the children and their families as they go to battle again this week.

7-17-09

Dr Modak just stopped by with the final MIBG report: the NB spot on Morgan's shoulder appears to be gone and the "skeletal uptake has diminished in intensity" !!!! This means that one spot is gone and the rest are starting to go away! We are so happy to know that this treatment is working. The scan continues to show spots of disease along the spine, at the hips and above and below both knees, but they are not as bright (intense) on the scan. We are so encouraged about the second round of hot 3F8 next week. This is very good news, but Morgan still has a long way to go with treatment. She is VERY neutropenic (low white blood cells) right now, and will continue to be neutropenic AND need blood and platelet support for several weeks. Dr Modak doesn't expect her counts to come up on their own, so we will continue to be very careful about keeping Morgan away from germs and anyone who might be sick.

She is in good spirits now, she is still sore from her bone marrow biopsies yesterday. We are keeping busy with crafts from the playroom and card/board games, and of course, Disney Channel. One thing she misses is watching Food Network (they don't get it @ the hospital) but she'll make due for now.

Ally had a good day today @ trapeze school. She didn't go up to "fly through the air" but she was able to go with her friends from camp and they had fun together.

Thanks for your messages on the guestbook, Morgan asks to read them everyday.

7-16-09
Last night was a very long night for Morgan. She continued to spike a fever every four hours (when the tylenol would wear off) all through the night until 9am this morning. The cultures came back gram positive for infection. The results on the exact bacteria aren't back yer, but they added another more accurate antibiotic to fight the infection. At one point, about 4am she had chills with the fever and the team put an IV in her hand just in case the infection was still in her line. So far they haven't had to use the IV, but it will stay in a while longer just in case. This is why all patients with a central line have an automatic inpatient stay with a fever. If the infection stays in the line then the port will have to be removed. Dr Modak says they give it 72 hours to see if antibiotics will get rid of the infection.
She came out of her fever this morning and was awake for a short time before she had her bone marrow biopsies. She slept off the "sleepy medicine" from the procedure and was finally able to eat around 2 o'clock today.
She is still in good spirits, she's eating and playing and watching tv. And charming the doctors with her food/cooking knowledge and recipes. Our Sparklyflower makes REALLY good deviled eggs :)
Ally has had a great time at camp; tomorrow Clint is going with Ally and "the camp" to a trapeze school in midtown. The kids are really excited, apparently there will be some "flying" in the air tomorrow, I'll let you know how that goes!
The plan is still to be inpatient for about three weeks. Morgan will do the hot 3F8 treatment next week, followed by stem cell rescue the week after, then we will wait for her counts to come up. We still won't be able to go home after that because as soon as we are out of the hospital Morgan will have scans.
So we are settling in, as always trying to make the best of it. Morgan is going to take advantage of some of the music/dance therapy programs while inpatient, and Ally will have several more weeks of camp!

7-15-09
This morning Morgan woke complaining of a sore throat and when I took her temperature it was 100.3. That isn't technically a fever, but close enough to stop by the day hospital before the MIBG scan. By the time we made to the PDH, her temp was more like 102, so we are sitting in the day hospital waiting on an inpatient bed. Her ANC is still zero so we are almost surely not going to stay on protocol. Dr Modak says we can still treat with one more dose of hot 3F8, but she wil need a stem cell rescue afterwards and we can expect to be inpatient for about three weeks. This is not what we wanted to hear, but this is why we had to stay here this time instead of going home. At least she can still get treatment.
The CT scan was clear, so that is good. She had her MIBG scan about an hour ago, we won't get results from that until tomorrow.
So were are going to be in NYC for a while. We won't know when she will be ready to go home, or even back to the Ronald McDonald House.
Ally is having fun at camp and enjoying playing with her friends.
Please keep Morgan in your prayers, she is feeling much better and the fever is gone now. She does so much better when she's outpatient so we are going to have to work really hard to keep her spirits up over the next few weeks while she's in the hospital.
Thanks for your messages and thoughtful cards, we enjoy reading them!

7-14-09
The CT scan this morning went well, we don't have any results yet, though. Morgan still has a runny nose and she is tired, but I'm guessing that's because she needed blood today. Her platelets are holding steady at 36 today, so tomorrow she will have her MIBG scan and then we will stop in at the day hospital afterwards to check her counts again.
We are not sure if her counts will recover in time to stay on treatment protocol for the hot 3F8. We are going to meet with Dr Modak on Thursday to see where her counts are and look at all of the scans. I was hoping we would to come home next week for at least a short stay, but at this point I can't even guess when we'll get to come home. Everything is dependant on what Morgan's WBC's do and when they start to increase.
Ally and Morgan are passing the time with "Camp Ronald McDonald" here at the house. We have been enjoying the company of our friends here, too. The kitchens are still under renovation, so we are lucky to have different organizations to come in and serve dinner every night. Most of these dinners are on the terrace and the nice weather and families eating together is nice to look forward to.

Our address in NYC is:
Ronald McDonald House
405 E 73rd St
New York, NY 10021
Room# 1003

7-13-09
Thanks so much for all of your messages! We had a great weekend. We had to skip the big trip to Six Flags, NJ with our RMH friends and stay close to the city because Morgan's ANC was zero and her platelets were also very low. Instead, Ally and Morgan got to run around Dylan's Candy Bar: Morgan picked out Tootsie Rolls and Ally picked out sour candy! We also went to John Jay park to ride the tire swing (again)! It was a nice (safe) relaxing weekend.

Morgan needed platelets again this morning.... Mondays are always slow, but we were out of there by four o'clock, so I'll call it a good day :) Her ANC is still zero, so we are doubling the dose of her neupogen shot to try and "wake up" her bone marrow.
She woke up with a headache this morning and has had a little runny nose since Saturday, so were are adding a head CT to the scan schedule to see if she has a sinus infection. The headache is better now, after a third day's dose of Claratin and some tylenol. Tomorrow, Morgan will have her CT scan, ECHO of her heart and her MIBG injection.
Wednesday will be the MIBG scan and then bone marrow biopsies on Thursday. We are supposed to meet with Dr Modak on Thursday morning, to go over the scan results and decide on the next phase of treatment.
Ally and Clint went with "Camp Ronald McDonald" to Central Park today. The kids played in the park and climbed the rocks, everybody had a good time.

A BIG THANKS to everyone who contributed to Saturday's yard sale at Walden Lake Early Learning Center. We wished we could have been there to see everyone...we are so lucky to have you!

7-10-09
Happy Friday! We are happy to have Daddy here with us as we finish up the week in NYC. We took Morgan to clinic this morning to check counts- she needed platelets again and her ANC is zero. Her hemoglobin is holding steady. We have to start the neupogen shots again tonight, so her platelets will surely drop again over the weekend. Hopefully her bone marrow will "wake up" soon and start making her own cells.
We are going to take it easy at the Ronald this weekend. We promised the girls a trip to Dylan's Candy Bar so we will do that tomorrow and I'll try to get some pics up for you. For those of you who've never heard of it, Dylan's Candy Bar is a famous three story candy store in Manhattan. It's a couple of blocks from here and it is a super-fun place to go. It's colorful and jam-packed with every kind of candy ever made and the booming music they play is all-candy related which gets Morgan in a very dancing mood! The third floor is an ice cream/cupcake bar and has a great view of the city below. Ally and Morgan are very excited to go and pick out some candy!

Don't forget-- tomorrow is the BIG yard sale/bake sale for Morgan @ Walden Lake Early Learning Center on Turkey Creek Rd in Plant City. More info is on the events forum page. Thanks to everyone for donating items to sell and for donating their time to put this together for Sparklyflower :)

7-8-09
We spent the first half of our day at the hospital. Morgan needed blood, but we pretty much expected it. Her platelets are still low, not enough for a transfusion but her ANC is up, so we are stopping the neupogen shots for a few nights to see if her platelets will come up on their own. She is still in good spirits and still happy and playing.
Ally is enjoying her time here, too. She made her own pizza today in the playroom at the hospital and also had an ice cream sundae! She really enjoys the playroom volunteers and will sit and chat while doing crafts. Today she made a beaded necklace and some spy glasses :)
This has been a very uneventful week (the best kind in hem/onc world), so there isn't much else to report on from NYC.
Back at home my work is holding another yard sale for Morgan this Saturday. It is at WaldenLake Early Learning Center on Turkey Creek Rd in Plant City. The ladies have been working hard to put together a great sale/ bake sale so, please stop by if you can! We appreciate the support!
Please pray for Morgan and all her friends who bravely fight this battle everyday. And please say a special prayer for our friend Aisylin, she is the sweetest three year old girl you will ever meet --she's going to need another surgery and more chemo. We have become very close to her and her mom, dad and big brother Jasper while saying in NYC. Please keep her family in your thoughts and prayers.

7-7-09
We are staying in NYC. Morgan's counts are still dropping, so they want us to stay close by while we wait to start another cycle of treatment. She needed platelets today, but we are back at the Ronald now and she is feeling fine. She is feeling so good and playing so hard that she keeps getting bumps and bruises all over! She is in good spirits, though and we are all happy for that.
The Ronald McDonald House is hosting summer camp for the kids with different activities each day in the playroom. This afternoon they are making jewelry.
We are going to clinic M-W-F this week then next week is scan week. Morgan will have a complete work up of scans and bloodwork on Tuesday and Wednesday and then probably start the second hot 3F8 treatment at the end of the week.
Thanks for checking in on our girl, we love your messages and well wishes :)

7-4-09
Emily and the girls made it to NY safely yesterday and Morgan's infusion went smoothly this morning, her ANC is still on the rise but Platelets are still dropping. Emily will meet with Dr. Modak on Monday and find out if he thinks it's Ok to come home or if she should stay until it's time for scans and the next round of Hot 3F8. I am keeping my fingers crossed that they can come home for 8 or 9 days and enjoy some more time in the pool and sleep in thier own beds but we will happily do what Dr. Modak thinks is best. I say that because in the middle of the week last week he took the time to send Emily an Email asking how Morgan was doing, now I do not know exactly how many patients he has but I know it's alot, I also know he is an extremely busy Dr. and working to cure cancer has got to take alot out of ones day. He did not ask about numbers or anything medical just simply "how is Morgan doing, hope all is well" Our daughter is not just another patient to Dr. Modak, he loves all of these kids like they are his own and when things are not going well you can see the concern and sadness in his eyes so it's not hard to do what he thinks is best even if we do not like it. If every Doctor could be like Modak the world would surely be a better place and we are so lucky to have him!
Clint

7-2-09
Clinic went well this morning. Morgan's ANC is 730, so the neupogen shots we have been giving her every night are working to boost her white cells, but the shots can lower platelets, and hers are now 44(normal is 180-300). The neupogen is also causing her pain in her feet. We are going to switch to every-other day shots and hopefully this will help. All of this means we are OK to fly to NYC tomorrow.
We have to be at Sloan at 8am Saturday for pre-meds and an Avastin infusion. Then we will go to clinic Monday and see if Dr Modak thinks we should stay in NYC or come home for another week.
We have really enjoyed this past week at home. It has been so nice to visit with friends and family and spend some time away from the hospital. It seems like we always run out of time and don't have the chance to see everyone. Morgan and Ally have really had a good time this week, it's a plus that Morgan has been feeling so well.
I try to avoid the thought of returning to NYC until the very last minute,so now is crunch time and I'll get the house ready and everyone packed. I am taking both girls with me this time while Clinton stays home to work. If we have to stay in NYC until Morgan's next treatment then he will meet us up there the following weekend.
I think all of the travel is starting to wear on us. We miss our friends from NYC when we're home and miss our friends and family from home when we're in NYC. We are trying to make the best of it, though. We know this is where Morgan needs to be. We are so lucky to be able to bring Morgan to Sloan for treatment.

Dr Modak e-mailed me with the results from the last BM biopsies: all except one was negative! This is great news, as these were the first negative bone marrows we have received. At Sloan, after three negative biopsies in a row her marrow is considered clear. She will have another BM biopsy done in two weeks.

Please continue to pray for Morgan, her friends Brooklyn, Gabby, Aisylin, and all other kids facing cancer and also for their families.

6-29-09
Sparklyflower is still at home and still feeling good. We had a fun afternoon in the pool with cousins on Saturday, followed by s'mores by the fire and then a sleepover complete with movie and popcorn! They had so much fun it took them 15 minutes once the lights were out--the girls were out and slept solid until daylight :)
We are enjoying the sun and the open space, Morgan is full speed all day; Dr Modak warned me that she'll probably feel so good, she'll wind up playing so hard that we'll find a few bumps and bruises. This has held true, but she picks right back up and keeps on having fun!
Ally has enjoyed being outside more than all of us.....her blonde hair and freckles are coming out....so cute!
We have clinic today, and a few more days to enjoy home, thanks for checking in!

6-26-09
Three days have passed since the last post; sorry for the delay. We have been easing back into home-life and finding the new normal. We have been soaking up the Florida sun (when it's not raining) and enjoying eachother in these familiar surroundings. The place is familiar, but with so much time spent away it is difficult to know what to take care of first. Instead of work, we have decided that first comes playtime, then more playtime and finally more playtime after that! Barbies, baking, swimming and running around the yard is keeping us busy! Clint is back to work, and I am trying to squeeze in time for errands.

Morgan feels really good. Clinic was this morning, her hemoglobin and platlets are up (good) and her ANC is 450. She isn't really neutropenic, but almost, so we will take a few extra precautions with her, but we are determined to have fun, fun, fun while we're home! Morgan is back in the kitchen as usual. She and Ally made brownies yesterday......SO yummy! We're going back to clinic Monday and Thursday to check counts, but she is not expected to need any transfusions next week. We are scheduled to return to NYC for the second infusion of Avastin on July 3rd. We aren't sure if we'll come back or stay, it will depend on her blood counts. She has been feeling so good lately, so we are soaking it in, enjoying every moment.

There are a few fundraisers on the events forum. The raffle for Morgan has been extended, and also there is a three day event in the works for August. You can check out the forum for details. You don't have to sign in to the forum to read it, only if you want to post on it. Thanks to everyone for helping out. We continue to be so humbled by all of the support we receive from family and friends!

6-23-09
Home sweet home!
Ally and Morgan are crafting at the kitchen table, Clint is mowing the yard and I'm in the kitchen.....it's business as usual at the Pierce household!
We are glad to be home. Thank you to our neighbors for taking such good care of everything and watching over the place for us while we were away :)
Morgan is still feeling good. She is such an inspiration to me, with all that she has been through, her spirit is so strong!
She is eating and still gaining weight, she has a way to go to reach her pre-dx weight, but those precious cheeks are back along with her stunning smile and a little peach fuzz starting to sprout on her head! She says when it gets long enough, she wants me to put it in piggy-tails ;)

6-22-09
We were discharged from the hospital on Sunday afternoon. Morgan has been feeling great. She is eating well and playing well. She hasn't had any more residual pain, we are so glad for that. She had her scan this morning and bloodwork done. Everything looks good, so we are heading home tomorrow! We will be home for almost two weeks. Morgan will have counts checked twice a week while at home, Morgan may go neutropenic and will probably need platelets, but hopefully she will feel good. We are scheduled to come back to NYC on July 3rd.

6-20-09
Last night was a long one. Morgan woke up several times needing a dilaudid rescue. She was having pain in her feet, mostly the heels of her feet. We used heat packs along with the pain medicine and she finally drifted of to sleep after midnight.
Clint took my place this morning to spend the day with Morgan. She felt better today and was sitting up doing her usual activities. Since she is confined to the hospital room, she is playing her nintendo ds, writing in her journal, and of course, reading Junie B! She is eating well and she even made her favorite snack this afternoon- deviled eggs. Sparklyflower should be discharged from the hospital tomorrow.

Ally and I spent the day at the Ronald. We finished up some chores and schoolwork, then had fun in the playroom :)

6-19-09
Morgan is a SUPERHERO! She is the strongest person I know. She handled this very intense therapy just like she has handled every other aspect of this cancer treatment: with amazing strength and determination.

First: a quick refresher.
3F8 antibody works by finding and attaching to GD2 markers on neuroblastoma cells. The hot part of this therapy works because the 3F8 delivers the
(hot)radiation directly to the neuroblastoma cells in the body. This is great news and is a treatment that has worked for many NB patients. That's the good news. The bad news is that the main side affect of this therapy is pain.

So the treatment that you hope your child will recieve causes what you never want your child to go through.

These kids are warriors, though, and they fight through it. Morgan did the same. She had about 15 minutes of pain, focusing in her back. She recieved dilaudid rescues and continued with deep breathing and fought her way through. She slept for a few hours afterward and she is now sitting up in bed watching tv and eating New York style cheesecake :)

I don't think she remembers much about the infusion, but only time will tell. One thing I know for sure is that I am so LUCKY to be HER MOMMY! She is one special girl!

Clinton and I are so thankful for the 3F8 nurses, Cat and Lea, and to Dr Modak. These people are true professionals and the best at what they do. They could read Morgan's needs as well as her own parents and were quick to act on getting her what she needed. They are the most compassionate people I have ever met.

So after all the anxiety of what was to come, now that it is over, we will play the waiting game to see if and when Morgan's counts begin to fall. She will probably need platelets more than anything. If you feel called to donate, it doesn't matter what blood type you are
( anyone can recieve platelets from any blood type) I have a link to the Florida Blood Services on the "How you can help" link on the top left of this page.

We are inpatient until the radioactivity levels are low enough to be safe. Morgan has a scan on Monday, then we are outta here!

Allison played in the hospital playroom while Morgan's infusion took place. When it was over, Clint took Ally back to the Ronald, where she earned her white/yellow belt in her Kids Kicking Cancer karate class. Way to go, Ally!

6-18-09
What a day! Since we spent the night in the hospital last night, Morgan took full advantage of the inpatient playroom this morning! We were just passing time, playing, eating and watching tv. Dr Modak came in after 2, to let us know that we couldn’t treat today because of a quality control issue. The company that makes the antibody does a QC test and then Sloan does their own. The test was only slightly out of range, but he will only do what is safe for Morgan. Dr M says he has done 50-60 of these and has never had this outcome.
We are disappointed to have the schedule setback, but so glad we are here with a doctor that pays such attention to detail and cares so much about his patients and their families. So we will go back to the hospital tonight and try again tomorrow.
My nerves are shot, there’s so much that goes into this treatment, the anxiety is definantly present. Of course, as I am a nervous wreck, my daughter is her usual chatty, happy, loving self. She doesn’t miss a beat. If she’s not charming the doctors with her amazing personality and great recipes, she letting them know how to do their job 
Ally is able to come into the hospital room until the infusion takes place, then she won’t see Morgan until she’s discharged from the hospital. She’s not happy about that, but she’s trying to focus on having fun with her friends.
Thanks for the care packages and the calls and letters and messages. We are so lucky to have the support of so many wonderful friends!

6-17-09
he early show did air yesterday morning but the story didnt show till about 8:40 and yes for those of you that were'nt able to see it both of our girls were on CBS in a couple of short video clips. The CBS Early Show website has an article still up as of today with a picture of Morgan and Lexie (Gabby's little sister) the caption say's "unidentified girls" you can see it here. Morgan is going inpatient tonight to get ready for her new treatment tommorow and hopefully will be discharged by Saturday. Hopefully we will be home by Sunday or Monday in our new favorite vacation spot THE HOUSE!
Also please check out our Events Forum for news of some much needed and appreciated fund raisers coming up to help us continue bringing Morgan to NY for her treatments, this is a very expensive journey we are on and we continue to be humbled by the support of our family, friends and community, without all of you this would be impossible.
You can get to the Events Forum by clicking on the link on the left side of the page, when the forum page comes up click on events then choose which discussion you want to see. You do not need to sign up to look at the forum, only if you want to post on it.
We have also created an Events Calendar to help you keep track of upcoming events the link is also on the left side of the page.

Thanks for checking in, Clint

6-15-09
Not much to report today. Sparklyflower and her sister are doing fine.
I recieved a call from one of the producers at CBS, and the piece they did on Sloan's prom will air tomorrow morning at 8:15am. He said that Ally and Morgan are both in the segment, so if you are able to, check it out!

6-14-09
We had a fun time at Hershey Park yesterday. The Ronald chartered a big bus for us and offered bagels and oj for breakfast and a movie for the two and a half hour trip over to Hershey, PA. We all got VIP passes, kind of like the fast passes at Disney, so we could jump ahead in line at most of the rides. This helped the kids last a little longer and have enough energy to ride rollercoasters and play games. Clint, Ally and Morgan rode a rollercoaster called "The Comet" Morgan said she was a little bit scared, but it was fun, and Ally liked it, too. It was a beautiful day, with blue skies and warm like springtime is at home. We had lunch at the park and of course cotton candy and fresh popcorn, and then snacks were provided with another movie for the trip back. All the kids had a great time.
Today was a lazy day of laundry and schoolwork. This evening the girls played in the playroom with some new friends.
We met another Tampa family at the Ronald tonight. Thier son also has neuroblastoma, and relapsed in February. Fortunately, after four rounds of chemo he is NED again, so they are starting 3F8 tomorrow. It is such a small world. and so interesting to discover another family so close to home with NB.
We will be so happy when the day comes that no family has to hear that diagnoses ever again.
We are not scheduled for anything except bloodwork until Thursday, so we will hang around the house, and maybe Central Park as we continue to wait for time to pass.
Thanks for checking in :)

6-13-09
Sparklyflower is feeling good. She has enjoyed two hospital-free days and played in the hospital playroom on Friday. Very early Friday morning, around 6am, we all walked down to Central Park and waited in line for an hour to ssee the Jonas Brothers perform for Good Morning America. Ally was SO excited, and Morgan was ready to head back to the house after the first song. When we got back to the house and turned the concert on the tv, Morgan said, "it's much better from here!"
Today, the RMH is taking everyone to Hershey Park in Pennsylvannia, for a day of fun. Ally & Morgan are very excited!
We are still planning on hot 3F8 for Thursday. Dr Modak thinks it will only be a two day inpatient stay, but I know better than to get my hopes up, so we are planning to stay in NYC until at least Father's Day.
Check the pictures pages for pics from the FAO Schwarz party on Thursday, and other stuff from our week.

6-10-09
We have been relaxing at RMH the last few days. We are not scheduled to go back to clinic until Friday. We have decided to stay here in NYC, it is too much financially to fly home and back in less than a week. Morgan’s treatment is supposed to start next Thursday. Clinton and I are still going over the protocol for hot 3F8, we will meet with Dr Modak again on Friday to talk about it some more. It is a three or four day inpatient hospital stay. Ally won’t be allowed to go into Morgan’s room during that time, so either Clint or I will alternate being in the hospital with Morgan during the day and overnight. After we are discharged from the hospital, we are free to go home, but Morgan will be neutropenic and need blood support for two to four weeks. After four weeks, we will return to NYC for another complete work up of scans. It has been raining here in the city, so the girls have been playing downstairs with their friends. Tomorrow night the Candlelighters are hosting a party at FAO Schwartz for the kids from the RMH. Ally and Morgan are so excited, and we should be able to get some pictures. Speaking of pictures, Clint added a few to photobucket of the prom and our trip to Central Park on Sunday. Thanks for the calls and messages of support, we are getting by, trying to pass the time in NYC.

6-9-09
The final report on Morgan's MIBG scan isn't back yet, but the doctors reviewed it with us today. The spots on both femurs and knees are still lighting up. Dr Modak said it looks like there is some improvement. The doctor's recommendation is to go ahead with a therapy called hot 3F8. You can learn more about 3F8 by going to http://www.mskcc.org/mskcc/html/2868.cfm. We are starting Morgan on SSKI drops today, this will protect her thyroid from the radioactive isotope used in the treatment. We might be able to come home for a week, and then return to NYC for the treatment. During the treament, Morgan will be inpatient for about three days, then we will be allowed to come home for two weeks.
We are trying to learn as much as we can about this process. There's a lot to wrap our minds around and still more decisions to be made. We have known this was an option and we are glad to still have lots of options here in NYC. The doctors here realy know this disease and are doing so much to heal our kids.
Morgan feels good, her counts are up, so we should be able to just have fun when we come home. Both Ally and Morgan are excited about coming home, but sad because they'll miss all the friends they've made while staying here.
Thanks for checking on our girl, she still strong as ever :)

6-7-09
Morgan is still feeling good. She did an awesome job with her MIBG scan yesterday. She has to lay still for about an hour during, so she picked out a Dr Suess CD to listen to while she was in the scan. We will hear the results from this scan when we meet with the doctor on Monday.The Junior Women’s League hosted a BBQ here at the house on the terrace last night. The weather was very nice and the kids had a good time playing with hula hoops and breaking a piñata. We are taking it easy today, cleaning house and playing in the playroom.

6-5-09

Last night I typed a really long post, and I thought I posted it, but it is nowhere to be found. Here is the short version:
The second day of stem cell harvest was just like the first, no stem cells. The doctors decided to remove the temporary central line. Morgan was happy to have it gone since it caused her pain in her arm and shoulder.
Morgan drank her contrast this morning and kept it down, so she had her CT scan and we were back at Roanld by 10 this morning. We will return to Sloan @ 2 to recieve the MIBG injection, then we will go back tomorrow afternoon for the MIBG scan. We have a meeting with Dr Modak on Monday where we will look at all the scan results and formulate the next plan.
We moved rooms yesterday, so we are now in rm#1106.
A&M are finishing up some schoolwork now, then get ready to join their friends in the playroom.
Thanks for checking in!
Thank you for all of your prayers for our friend Gabby, her surgery went well and she is recovering with her family.

6-3-09
Yesterday wasn't quite as productive as we thought. After the harvest, the cells were counted, and the bad news is there WEREN'T ANY. So today, we harvested again. After prom.
Prom was fabulous, Ally and Morgan had so much fun :)
The camara police were everywhere, so you'll have to wait a little while for some pics, but I'll try to detail it for those who want a visual:
Morgan wore a light blue knee length gown with a pink jeweled heart necklace and her blue and real pearl bracelet. She applied her own blue eye shadow and pink glitter lip gloss, and finished the outfit with white satin strappy shoes and a silver purse.
Ally wore a black knee length dress with white trim and white satin shoes. She had her make up applied by a professional make up artist complete with blush and mascara. She carried a black sequined purse and a pearl necklace.
The prom was held in the west dinning room at Sloan, with purple and silver balloons covering the ceiling. The buffet included potato panacakes, dinosaur chicken nuggets tuna sandwiches, tomato & mozzarella sandwiches, fruit, punch, cake, and an ice cream sundae bar. The DJ rocked the house with tunes from the 50's to present, and the girls danced and danced with their friends.
Also, our friends Ashley and Megan were named Prom Queen-teen and Prom Queen Junior, so all of the girls were very excited for their friends!!
It was a really fun experience. The CBS Early Show crew was there, recording the dance and talking to the kids. They talked to Ally some and got some footage of Morgan, I'll let you know if we hear anything about when or if they might be on the show.
After prom, we took Morgan back to the donor room to harvest again. We were exhausted so we both took a nap, then she read some Junie B. She is still having pain where the temp line is placed, and very annoyed that we have to keep going to the donor room, so hopefully we got some cells today and we are nearing the end of stem cell collection.
Tomorrow we wil go back to the day hospital to find out what is next.
Please say a prayer for our friend Gabby who goes into surgery tomorrow. We have known this family since we first came to NYC and they have become dear friends to us.
http://www.caringbridge.org/visit/gabriellechiasson

6-2-09
Another long day today for Sparklyflower, but a productive one. Bone marrows and line placement went well. We didn't get started with the harvest until 2, so we didn't finish until 5, but we made it back to the house in time for Newman's catering for dinner :)
Morgan is feeling better, no more fevers or nausea, but the temp line in her chest is causing her pain, so we're giving her tylenol for that. She has to keep the line in until we have enough bagged stem cells. We will find out in the morning if we need to harvest again tomorrow afternoon. Either way we'll take her to prom before she goes to clinic.
Ally told her Daddy that they have tuxedo t-shirts, so he has no excuse to not dress up!
The girls picked out purses today to go with their dresses for prom, and tonight we painted our fingernails.
We aren't allowed to take pictures at the hospital, they are super concerned about privacy, so we have to sign a waiver and they take pictures of us, then give us copies later. We'll try to sneek in a few though, so we can post some on the site ;)
Thanks for all the messages, we are half way through scanxiety week, and can't wait for it to be overwith!

6-1-09
Today was a very long day. Before I tell you about today, though, let me tell you about last night. We walked to Barnes and Noble before dinner with some of our friends, so Ally could spend her gift card, and so we could look for Junie B Jones on CD for Morgan. Her MRI was today, and it is a very loud machine (it sounds like hammers and missiles firing at the same time in two minute intervals for about twenty minutes), so it is nice to have a CD or something to listen to while the scan is taking place. Lately, Morgan has taken to all the Junie B books that we have (she's reading them on her own) and so she really wanted to listen to Junie B during her scan. Anyway, we went to B&N, and then on to dinner. Morgan decided she wasn't hungry. She didn't want to go back to the room, but wanted to lay in the stroller while we ate. When we got back to the room, she was burning up, fever of 102. I took her straight to Urgent Care at Sloan, where they gave her some tylenol and a dose of antibiotics. They also ran a CBC and blood cultures. Her ANC is really high and if you're not neutropenic, they let you go home and come back to the hospital the next day for another dose of antibiotics. If anything grows from the blood cultures then they will treat it accordingly. So, Morgan and I got back to RMH around 2am. We slept a little, then were back up at Sloan this morning to start our day of scans. She still didn't feel well, and couldn't keep down enough contrast to do the CT scan, so we rescheduled that for Friday. She did finish her ECHO and MRI so that's done. She ate some ice cream tonight, and went to the playroom for a while, so we're hoping this was just a stomach bug that will quickly pass.
Tomorrow, she will have a central line placement for stem cell harvest, bone marrow biopsies and aspirates, and if she doesn't get another fever, she'll do the stem cell harvest. It is going to be another long day, but that's why we're here, and we'll continue to do what needs to be done to put her on the path to NED.
Ally is having fun. She is so happy that her friends Gabby, Sophia, Lexi and Megan are here. The girls are enjoying spending time together. Ally picked out a prom dress for herself today and one for her sister. The Pediatric Day Hospital at Sloan hosts an annual prom for all the kids and siblings, and everyone, including the parents, nurses, doctors dress up for the occasion. The kids will be treated to makeovers and then dance and munch on yummy food. They are SO excited!

We made to NYC! Our flight was good and we are settling in at the Ronald as a type. We are in room#804. Ally and Morgan have already scheduled a playdate for tonight with their friends Gabby, Sophie nad Lexi :)
Morgan is napping now, she did well on the plane, but she was ready for some lunch and some rest after the long morning.
We are so lucky to have the Ronald McDonald House of NYC as home base while we go through treatments at Sloan. We have a small room with two twin beds and a pull out couch and a full bathroom. The house has a dinning room with ten kitchens. Each room is assigned the use of one kitchen, with a shelf in the fridge and a shelf in the freezer and one cabinet with a lock. We don't usually have to buy too many groceries since there are so many organizations in the city that cater dinner to the families here. I've mentioned the playroom before, it's in the basement and it is equipped with a video game room, a crafts table, a teen room, ping pong table, board games and blocks, housekeeping center and a sitting area with a projection screen tv for watching movies. All of this in the middle of New York City for only $35 a night is a steal!
We are going to the day hospital in the morning, Morgan will have to drink the yucky contrast and then have a CT scan followed by an ECHO and an MRI. We will probably be there all day.
A special thanks to all of those who participated in the raffle for Morgan. We are so blessed to have you and your support.

Morgan has continued to feel well. Her WBC counts were at their low point (called nadir) on Friday, but lucky for us, her hemoglobin and platelets held steady, so no transfusions. She played this weekend still napping in the afternoon.
On Monday, we all painted inside the playhouse, and Ally and Morgan decorated the desk inside. We could tell by yesterday that she was on the upswing, more active than she had been in a while.
Today, we went to clinic and ALL of her counts are up! That means no more shots for the next three nights :)
Since she was feeling so good, we decided to do something fun. I had some free tickets to Lowry Park Zoo so we celebrated with a trip to see the animals and ride some rides. Ally and Morgan had such a fun day!
We are going to have fun at home over the next few days. On Friday, Morgan starts her neupogen shot again. She prefers to have an insuflon put in, so we'll go to clinic for that Friday morning. (An insuflon is a kind of catheter used to give subcutaneus injections without having to stick her every time she needs a shot. It is covered by a bandage and has a tiny "port" used to insert the needle.) We will start the neupogen again on Friday to boost her WBC's to prepare her for stem cell harvest next week at Sloan.
Thanks for checking in on us, we are loving this hot, rainy weather! pictures are coming soon, so keep checking back.

5-21-09

Hello all! We are well, still at home and enjoying every minute! Morgan went to clinic yesterday, her WBC counts are starting to drop, her ANC was 670 then, so she is probably neutropenic now. Her platelets are falling, but she didn’t need any transfusions, so that was nice. We are going back to clinic tomorrow to check counts again.She’s felt good enough to help make dinner and play with Ally in her room. She is still napping some through the day, but the other side effects from the chemo are minimal. It has been so nice to be home, we have been cleaning out the overflow of toys from the clostets, preparing to fully stock the playhouse with all the necessary fun items for a happy summer spent outside. Our girls have been so lucky to have so many friends offer gifts and games to keep the boredom at bay. This weekend Morgan wants to help her Daddy put up some shelves so she and Ally will have a small selection of board games and Barbie dolls to play with in the playhouse!Ally had been waiting patiently to cook a homemade dinner, so last night, we made meatloaf and mashed potatoes with all the fixin’s. We enjoyed that meal as much as we have enjoyed being in our own home. Thanks for the continued messages on the guestbook. I don’t update as often when we’re home, I apologize for that, but not only are we busy enjoying playing and cleaning (yes, I said cleaning) but I’m still caring for a chemo patient and that takes precious time as well. My lack of entries just means we are busy at home.So......much love to you ALL from the Pierce family. We are thinking of you as we spend our next week at our new vacation spot….our home!

5-18-09
We are home! Yesterday started early, around 5am, and we finally made it home yesterday afternoon. We settled in and got some sleep.This morning Morgan went to clinic. Her hemoglobin, platelets and wbc’s are holding steady. This last round of chemo was a low dose, so she may not go neutropenic, or maybe not for as long as before. It’s hard to guess since this is round#7 and her bone marrow has been knocked down with six rounds of chemo already. Morgan is feeling good, her weight is holding steady and she is hungry through the day. She eats three meals a day with snacks in between, even a “midnight snack” around 10pm. Funny she always seems to be hungry after bedtime, but we don’t mind, we’re happy to see her kissable chubby cheeks come back : )We are going to take it easy around the house for a few days, Morgan will go to clinic and check counts on Wednesday then Friday. Thanks for checking in!

5-16-09
GOING HOME TOMORROW!!!!!
Emily is twirling around the room like a tornado headed south cleaning the room, packing clothes, figuring out what to do with all the free toys and stuffed animals and yawning ALOT! I,ve been doing all of the running for her so she can concentrate on her tasks "Go get this"! "Bring me that"! up down up down up down!!!!! We are ready to be in Plant City and I am looking foreword to being at home and getting back to work. Who knows? mabey i,ll lose a couple of the extra pounds I,ve put on since this started, around here you almost plan your day around meal times , What are we gonna have for breakfast? when is the chemo gonna start? are we gonna still be here at lunchtime? when is the chemo gonna be done? is the house gonna have dinner tonight? no! well then where are we gonna eat? You see what I mean! About 4 or 5 night a week local restraunts, pizzarias and charities cater dinner to the RMH and most of the time IT"S GOOD so I usually have a second helping just to let them know how much I appreciate them :) Morgan is doing pretty good, still fairly active and eating some and overall in good spirits. She's been saying "I wanna go home" alot more lately so we are very happy to have a couple of weeks off and according to the doctors the chances of getting fevers or counts falling very low are slim (knock on wood) so hopefully it will be two weeks of good hometime for little miss Sparklyflower and the Pierce family. Thanks for coming along with us on our journey, it has been a tough one and continues to be, we are trying to make the best of it for the kids sake and for our sanity and all of you help make that a little bit easier. So good night and sleep well knowing that Sparklyflower is doing well.
Clint

5-14-09
Uneventful was the word of the week until yesterday. Morgan has tolerated this round of chemo very well, and in an effort to help the time pass more quickly, we have been going out into the city every day after our clinic visit. We have been to the park, the candy store and the playroom at RMH. Dinner has been served every night at the house, with Wednesday night hosted by the people from Coney Island. We munched on hot dogs and hamburgers and snacked on popcorn and cotton candy for dessert. The kids played ring toss and bowling, everyone had fun! Yesterday, Morgan started to feel dizzy and uneasy on her feet at the start of her Zofran infusion. The team took this seriously, did a complete exam and sent us for a CT scan. In the end they decided it was a combination of dehydration and a drug related reaction, so after chemo, they sent us to the Ronald with a backpack of IV fluids last night. Today, Morgan is feeling great. Her dosage of Zofran was lowered this morning, and given over a longer period of time. She tolerated it fine and is at the craft table making something with scissors and paper. Ally is enjoying her time here as well, although I think she is ready to be home for a while. As we all are.We are heading home on Sunday and will be there for about two weeks before we return for stem cell harvest and another complete work up of scans and bone marrows. Thanks for the calls and cards, we appreciate you more than you know!

5-11-09
Alright here we go! Today went well, we took our time getting to the hospital this morning because the low dose chemo is only a 1 hour infusion per day and the hospital is always very busy on Mondays so we spent the better part of the day there and most of that in the playroom with Ally & Morgan playing games and doing crafts. Morgan seems to be feeling good so far and we are thankful for that but we will keep her medicated for nausea anyway just in case. I,ve been on this computer for about 14 hours figuring out how to set up Photobucket and build a picture page on this site and link them together and make it look good enough to suit Emily so please GO CHECK IT OUT ! I would also like to ask everyone to keep Brooklyn Davison, Ty Murray and little Rodrigo from Spain in your hearts and prayers as they have all sufferd some setbacks knocking them off schedule for thier treatments ,also for all the other kids suffering today with pediatric cancer (enough to fill a school bus are diagnosed everyday with cancer) and for thier familys whom the majority of are torn apart and seperated from children, parents or siblings for extended periods of time. Very few are as blessed as we are to be able keep our family together and for that we are more than thankfull.

Sincerely, Clint
Happy Mother’s Day!

Happy Mother’s Day!

5-10-09

Hope you had a nice day today. It was beautiful here in NYC; we had a nice lunch with our friend Stephanie and her super cute kids Jasper and Aisy. Then we took Ally and Morgan to the American Girl Store so they could spend their gift cards. Both dolls got a new hair style at the doll salon, and then a new outfit. We rounded out the day soaking up some sun on the terrace at RMH. It was a nice day.Yesterday was really busy. We went to the “Kids walk for kids with cancer” walk in Central Park. It is totally organized by kids. They have been doing it for six years and have raised more than $600,000 and it all goes to pediatric cancer research at Sloan. We were so excited to be able to walk. It was 4.5 miles and Ally walked almost the whole way! We were able to walk with some of our friends from Sloan, Gabby and Liz, Fannie, Stephanie, Aisy and Jasper. We also walked with Morgan’s doctors for part of the way. We are so lucky to have such a dedicated team of professionals working to heal our Sparklyflower. Not only do these doctors and nurse practitioners work tirelessly all week long to treat our children, but they donate their time for the causes that help to further research for our kids. These people care about our kids as much as we do and we are so fortunate to have them. I’ve posted some pics on photobucket, if you click on the pictures link it will take you to that site.Tomorrow we will start chemo round #7. It is low dose, so we are unsure of how quickly she will feel the side affects. We are coming home next Sunday, and will return within 10 to 14 days to harvest stem cells again. Thanks for all the messages this weekend, we enjoy reading them. Hope you have a good week 

5-9-09
Morgan did a great job during her MIBG scan today! They switched machines on us half way through, so we had an hour of scans then a twenty minute break followed by another half hour of scan. She is such a strong girl.We waited for Dr Modak until three today. The MIBG showed some slight improvement in the spine area. Unfortunately, both femurs, both knees and her shoulder are still lighting up with neuroblastoma. We were obviously not happy with the results. Clinton and I have always tried to go in to meet with the doctors with an open, clear mind, ready to hear whatever they have to tell us, ready to work to come up with an informed plan of action. It gets harder to do every time. We took a few minutes to digest the information and got to work on a plan.Since there is so much NB left, we are going to get low dose chemo next week, for five days and then go home to recover. Her counts probably won’t fall as much as before, and her chance of a getting neutropenic fever is low. We will be home for two weeks and then come back up here for another complete work up like we had three weeks ago. She is feeling really good. We took her NG tube out, at Morgan’s request, because she is getting more chemo. She is eating well. We were in the playroom downstairs tonight, they had Hannah Montana on the radio turned up and all the girls, including Morgan, were dancing. We are going to Central Park tomorrow; there is a pediatric cancer walk. Thanks for all your prayers and thoughts. I will try to get some pictures up this weekend.

5-7-09

What a busy day! We started our day at Sloan, Morgan had her mediport accessed and labs drawn. Then we got her SSKI drops. We met with the team, Morgan’s weight is holding steady at 20.7! They called us early for the injection and we were back at RMH by 2 We had lunch and took a nice nap before heading down to the playroom for some crafts. The Leukemia and Lymphoma Society held Mother’s Day celebration for the mom’s at the RMH. It was so wonderful, we were treated to massages, manicures, facials, and goody bags filled with treats. It was a nice event, and so relaxing to sit and chat with the other moms here while listening to music and snacking on tea sandwiches and chocolate covered strawberries.Morgan continues to amaze us with her energy and spirit. She is happy and playing and even passing up the stroller to walk or run to the playroom. It is so comforting to see her having fun and being more independent. Tomorrow is our big day. I know Morgan will do well. She has to lay still for about two hours, she can have some breaks in between. We have a meeting with Dr Modak at 2:30 to go over the preliminary results and try to come up with a plan.

I’ll update when I have more info.

5-6-09
We are in NYC. Ally and Morgan have already settled in with their friend, Gabby and the other kids at the RMH. Despite the fact that they didn't have our reservation, we got a room, back on the seventh floor, right across the hall from where we were three weeks ago :)
Pizza was on the menu for dinner tonight (yay!), it is so nice to be able to put our minds to things other than what to fix for dinner. And we do love Delizia's Pizza!
Crafts were in the dining room tonight, flower arraingments for mother's day and then a concert in the basement playroom from a local high school. The kids rocked out to Beatles tunes and then had a dance party!
We are finally in our room and you would never know these girls have been going strong all day. So much energy, so little time.
Tomorrow is an easy day. We will pick up Morgan's SSKI drops (she has to take these for three days starting tomorrow to protect her thyroid from the radioactive isotope they give her tomorrow). Then she will have the MIBG injection (isotope) in the afternoon.

5-4-09
These are words to live by as we prepare for our next trip.

Morgan will have an MIBG scan on Friday. We will compare the scan from April (which showed NB still present) to the one she does on Friday and then make a decision on how to proceed. Please pray for a clean scan, or at least minimal disease, so we can be closer to our goal............. No Evidence of Disease.
NED is the only "remission" that neuroblastoma dx can achieve, since it is always assumed that some disease can linger undetected. We have many options left for treatment, and we are so thankful for that.
Morgan is ready. She is strong, and SHE GIVES US the strength we need to be by her side and help her fight this disease until it is GONE from her body!
Thanks for the calls, the prayers, the cards and the messages. We know you are supporting us and we are so lucky to have you :)

We have last minute errands to run, packing to do. Ally and Morgan are going to have fun with school friends and an ICE CREAM PARTY!! at the preschool.
I will update as soon as I can :)

5-3-09
No news IS goood news......we have been busy.......
We have been LOVING it at home! Sorry for the delay in updates again; turns out I have more time to update when we are inpatient, since there is so much fun to be had at home!
I have enjoyed cleaning my house, doing my laundry and washin dishes, yes I said enjoyed!
Ally and Morgan have played together more this weekend than they have in five months.....it's so nice to hear them talking and laughing like they used to. They finally had a sleepover at Grandma's on Friday, and Clinton and I took them to the beach for a few hours yesterday.
Right now, Morgan is showing her Daddy what else she wants done to the playhouse, I heard something about a desk and chairs as they were walking out the door :)
Morgan's neck pain is gone and her legs still hurt some when she walks. She is feeling good, though and in the kitchen helping to cook/bake every meal. Her weight is coming up, she's around 43 pounds now, but we will continue with the nightime calories unitl she's closer to her weight at DX.
We are going to enjoy three more days of "normal" while Morgan feels better and is more active everyday, until Wednesday, when we fly back to NYC.
I have talked to the Doctors here and at Sloan and all feel that we are fine to fly, as long as we take the regular precautions (Mo wears a mask, continuous hand washing, etc.). So were are leaving Wednesday and will return when the next step in treatment is finished. I'll write more about that later.
For now, enjoy your families, your home, and if you have it, the beautiful weather outside :)

4-29-09
We were so happy to be home yesterday, and Morgan felt good. She had periods of wake/play time with naps in between; not back to normal, but on her way for sure. Not for long.
Around 8:30 last night, I noticed that she wasn't turning her head to look around, more like turning the top half of her body......it didn't seem right, so I called the after hours oncologist, and she told me to take her straight to the ER to rule out meningitis ......OK, now we have been really lucky to have gone through six rounds of chemo, and surgery with only a few minor infections, and staying on schedule...but, come on, really!?! I flew out of the house, Morgan in tow, and headed to ACH. Thank goodness the nurse in the ER understood the situation (my neutropenic child) and put us in a room AWAY from the other (sick) kids in the ER. The doc was in the room within 15 minutes; he looked her over, jarred on her neck pretty good and told me he was confident Morgan DID NOT have meningitis. Breathe.
We then had to wait for the ER doc to call the hem/onc doc and make sure she didn't want us to stay for observation. Lucky us, we got to go home, so we did get to sleep in our own beds last night. Well, Morgan and I slept in HER bed (upon her request) until at 5 am she woke me up and reminded me that I didn't need to sleep in her bed ALL night. Thanks.
This morning we went to clinic to have a CBC; her hemoglobin and platelets are holding steady, and she has an ANC of 320. (over 500 and she can stop wearing the mask). So we are going to hang out at home tomorrow (hopefully), and back to clinic on Friday.
Once again, we are happy to be home :)

We are so excited at the progress our friends are making with the
http://www.firstgiving.com/paddlingforacure
campaign. If you haven't already, check out this site. It's awesome to see how so many have given to help our kids fight this horrible disease.

4-28-09
Surprise! We're Home!
Dr B took a look at Morgan this morning and I asked him, what number we were looking for in WBC's to get out of the hospital....he said.......she can go home.....this afternoon! Her WBC's did come up a little, enough for him to let us go with instructions to be very careful while her counts continue to recover. She is feeling a little better today, her throat hurts some, but she's eating and drinking well. We go to clinic in the morning to recheck counts.
We are all happy to be home.

4-27-09
Sorry for the delay in updates. The internet here at the hospital hasn't been working properly; it's working right now, so I'll try to get a full message in.
Morgan still doesn't have an ANC. She actually doesn't have many white blood cells at all. Her numbers are steady around .06 (normal being 4.0 or higher). She needed blood yesterday and platelets today. Her sore throat is worse today; it's a little red, but the antibiotics that she's on should cover anything bacterial so hopefully any WBC's her body is making are going to heal the sore throat and she won't be hurting too much longer. She took a long nap this afternoon, and she is eating pizza and chocolate cake for supper tonight.
Clint took Ally home tonight so she can go to school tomorrow. He is going to go back to work, too.
It's hard to say when Morgan's bone marrow will "wake up" and start making WBC's. It has taken this long before, I think we are just wearing down. Morgan has started to say things like, "this would be more fun at home", or "my own bed is more comfortable." She's never talked like this before while inpatient. I think she is just as ready as we are for a break.
It is times like these that I try to remember how lucky we are. We have so many treatment options left and we've only been fighting for five months. There are others who are not so fortunate. We are still taking this one day at a time, trying to do what is right for our family, what's best for our kids.
Thanks for sticking with us along the way. We know you're supporting us, and we are so fortunate to have you.
Please continue to pray for all the little warriors battling this awful disease. They and their parents continue to be an inspiration to me.
And also, for Morgan, pray for an ANC, or at least some WBC's to show up :)

4-25-09
Nothing new to report, we are still here in ACH watching the walls and waiting on some counts to start trending up. Morgan made a batch of brownies today with some help from OT and Ally went and hung out with Emily's friend Sharon and her family and did some swimming while I lost 10 hours of my life to a very boring OSHA instructer during a mandatory yearly refresher course that is required for my job. The only "action" there was a Mexican dude that got kicked out because he kept falling asleep, when asked why (thru his translator) he said "I dont understand english so there's no reason to stay awake". Thanks for checking in, hopefully we'll have some good news soon so we can get out of the ditch and back up on the highway.We have met some kind and extrordinary people along our journey, most of them in NYC, they are from all over the country and are fighting the same battle as us (some of them for a second time around) and they have been a wealth of knowledge, insperation and hope! thier kids are little warriors and very tough! (one of them even has the initials B.A.D. it suits her!) Some of them have been sharing each others websites on thier journal. I would like to follow suit. Here are a few with more to come as we go along.

Fran and Jeff Demers from Conneticut and thier son Jack who keeps them both in line http://www.caringbridge.org/visit/jackdemers

Carey and Shannon Davison from LA (Lower Alabama) and thier daughter Brooklyn A Davison she's a cuttie with a smile that will melt your heart right before she goes off like a crate full of TNT!
http://www.caringbridge.org/visit/brooklyndavison
Clint

4-24-09
Still in the hospital :(
Morgan's fever hasn't come back since last night. She has a sore throat and a reoccuring (sp?) headache, but other than that she's doing well. She is munching on sour cream and onion chips and playing her Cookin Mama game on her DS. She was up this morning making crafts with Ally and they both have had a good day so far. Clint took Ally down to Roser Park to run up and down the hills and get some energy out, so I decided to write a quick update.
Morgan's white counts are still less than one, so there's no chance of an ANC any time soon. A quick refresher for those who don't know: an ANC is an Absolute Neutrophil Count. The nuetrophils are the fighter white blood cells that your body uses to keep you from getting an infection. As Morgan's white blood cell counts drop, so do her neutrophils. When her neutrophils are gone she is neutropenic, meaning, she can't fight off infection. Therefore, when she gets a fever AND she's neutropenic, she has to stay on IV antibiotis until an infection is found and treated and/or until her neutrophil count comes back up. When her ANC reaches 500, we're OUTTA here!
So far the blood cultures have come back negative, so she probably got the fever BECAUSE she's neutropenic. I know. It's completely insane, but so goes the world of cancer. Nothing makes sense. Ever.
Luckily, she's in good spirits and we are keeping her up and moving. They check her blood counts every morning and trust me....I will report when I see....as soon as I see an increase in those white counts :)4-01-09
I can't believe it's April. The months are dissapearing so fast, it's hard to keep up!
Today, with the help of a wonderful friend, Clint and I took our girls to Disney World. We took them once back in 2004, but they didn't remember much from that trip so this was a whole new experience for them. We all had so much fun! The day started early on Main Street. It was Cheetos for Morgan (at 9am, but why not?) and a Mickey Rice Krispies treat for Ally. We headed over to Fantasyland to ride the tea cups, dumbo, It's a Small World, snow white ride, and we even met Alice in Wonderland! We enjoyed a paddle boat ride, a train ride and a nice lunch, before we split up. Ally and Clint rode Space Mountain and Morgan and I went back to Dumbo. As soon as our Dumbo started to lift in the air the rain came down.....we were soaked! And so was our stroller! It was ok in the end, we picked up a poncho (after much disagreement from my sparklyflower who thought we should buy a $30 umbrella instead :) and headed back to Main Street to watch the parade.I think the rain added a nice "Florida" element to the festivities! It was a warm day and the half hour of rain cooled it down a notch. Clint and Ally met us there, soaked from head to toe and ready to end our awesome day at Disney. It was so nice to go and have a fun, carefree day together. We had such a great time!
Tomorrow we are off to school, then the GI doctor. We leave on Sunday for NYC.
*check out the pictures page for more from today

4-22-09
We knew being home wouldn't last forever.
Yesterday, Morgan started to wind down early and took an extra long nap. I knew what that meant, so I started to get the house in order. We had dinner and at bathtime, when it was Morgan's turn, she felt REALLY warm, so I took her temp...38.3....which in our world means fever. Check in to the hospital kind of fever. Morgan and I spent the night in the ER and most of the day today. We are in a room now on the hem/onc floor. She will recieve IV antibiotics every day until her counts recover to an ANC of over 500. We'll be here for a few days at least.
Morgan has started to settle into "hospital mode", sleeping, wanting the lights off, just laying around. There's not much else to do here, but we are going to try and get her out to walk the halls at least a few times a day. Ally is here with us, we got a room at RMH so we all can stay out here for a few days.
Thanks for checking in, keep on posting in the guestbook, we love reading your entries, and we appreciate your support!

4-22-09
Clinic went fast this morning. Morgan had her NG tube placed. She has already had two before, so she knew what to expect. That didn't make her any less nervous, but she sat still and listened to the nurse, following directions, and it was in in less than 30 seconds. She always seems to find a way to get through these procedures with ease. She gets nervous, of course, but we are talking about a girl who at the age of four renamed herself "Sparklyflower"- she knows all about drama, but you never see in the clinic or the hospital when something yucky has to happen. Whereas any adult would throw a fit at the thought of having a tube put in their nose, Morgan just puts her game face on and gets it done.
She is stronger than anyone I know. She is my hero.
Luckily, she didn't need any blood or platelets today, so we got to go home early!
Right now she is looking up a recipe for dinner in her Paula Deen cookbook, and we are going to cook a meal together, in our home and enjoy spending time together :)

4-19-09
Today was Ally's birthday party, it was so much fun! since we just got home yesterday, we threw together a Candyland party this afternoon for Ally and a few of her cousins and friends. The kids played Candyland on a kid sized game board (made up with a tarp and some spray paint) and munched on b-day cake made and decorated by Ally. Thanks to Grandma Peggy for helping to gather all of the party supplies :)
Morgan had a good day, she played outside with the kids for a while and then stayed inside to play quietly and rest.
We are going to clinic in the morning to check counts and possibly put the NG tube back in.
Thanks for checking in on us; have a great week!

4-18-09
Home Sweet Home! We are home from NYC! It is so, so good to be here.

4-17-09
We had a good day today. Morgan went to clinic, had labs drawn, and we were given the OK to fly home tomorrow :)
Since we finished early, we decided to take A & M to the Empire State Building. They have been asking to go since our last trip and we had fun! I will post some of the pics on the NY pictures page. We will be home for as long as the evil fever stays away, going to clinic every few days to check counts. We are scheduled to return to NY the first week of May for another MIBG

4-16-09
The flowers are blooming in Central Park :) Some of them, anyway. We took of the Central Park with our friends The Hardee Family this afternoon. We had lots of fun! Morgan sat in the stroller while we walked through the park. She said she enjoyed herself, I know the fresh air did her some good. Friday we will check labs and de-access, then get ready for our trip home!

4-15-09
Morgan is sleeping soundly on the couch while I write. She had a good night sleep and a good morning at the hospital. She is more tired today, and she isn't hungry for anything we give her, but that will change after some rest. We left the hospital around 2:30 today, so we are taking it easy at RMH. Ally is enjoying the playroom, as usual!
We have one more chemo to go!

4-14-09
Day#2 is done. It was a good day for Sparklyflower. She played in the playroom for the first half of the day before settling into her room for lunch and a nap followed by some Cookin Mama 2 on her DS. She just loves that game. Ever since we started her on the meg ace (to stimulate appetite) she is playing that game and watching Food Network on tv. We have stopped the meg ace for a few days until the nausea passes. The NG tube will stay out for a while, too. When we get back home, if she needs it, we'll put it back in.
Dinner was catered at RMH tonight. We got back around 7, so we were the last to be served. It's a great help to get "home" from a day at the hospital and not worry about dinner. After dinner we settled into our room and watched the movie Bedtime Stories (thanks Miss Liz, for letting us borrow it :)

Thanks for all the donations to help out with
http://www.firstgiving.com/paddlingforacure. This is a great cause and will benefit much needed neuroblastoma research

4-13-09
We are finished with day #1. I misunderstood the road map for this week: She gets four days of chemo, and then we come in to clinic Friday for a complete blood chemistry before we are given the OK to fly home.

Morgan had a lot of fun today in the playroom with her friends Lexi and Gabby. She had a little fun with her sister, too :)

There were so many NB families in the day hospital today. Some had an average day in this cancer world that we live in, others not so much. I wish we could take all of this away. These kids are absolutely amazing and they are fighting so hard. I was talking to another NB mom in the waiting room today, and she compared it to a rollercoaster ride. You hit the high part and you are relieved, satisfied, maybe even happy, but then you go speeding downhill into the unknown, with no control over your next turn.

We will continue to fight. Morgan had a good day today. We got back to RMH late, around 8pm tonight, but she wanted to go to the playroom, so we closed the place down. We came back upstairs to settle in for the night and then she started to get sick. It was bad enough to make her NG tube come out, so I had to take it out the rest of the way. I’m not sure if they’ll put it back in this week or not. We gave her some visteral and she is sleeping soundly now.

Ally had an awesome day, playing with her friends Lexi and Gabby in the playroom. She even had hot dogs and watched some of the Mets game on the big screen in the playroom!

Thanks for checking in, we are getting the job done in NYC.

If you have a minute check out this site and consider donating in Morgan’s honor:

http://www.firstgiving.com/paddlingforacure

All money raised goes directly to the Band of Parents. The Band is funding new treatment options for neuroblastoma.

4-12-09
We never made it to Central Park, but we did do something really fun this weekend-- we went to Ohio! We decided Friday night to get away from the city for a little bit and we went to Ohio to visit some family. Ally and Morgan had a great time. They had tea parties and we celebrated Ally's soon-to-be-8-years-old birthday with a DQ ice cream cake. The Easter Bunny found Ally and Morgan in Ohio and left them each a basket and even an Easter Egg Hunt :) We all were able to relax for a few days and it was well worth the drive! Thanks for having us Aunt Sally :) And thanks Easter Bunny for finding us in Ohio and giving a great Easter Egg Hunt!
Thanks for all the well wishes in the guestbook. We hope you all had as nice of an Easter weekend as we did. Hopefully you were all spending precious time with your families.
New York is not our favorite place to be, but it was nice to see some familiar faces when we returned tonight. As I've said before, we become like a family here, supporting one another and helping to pass the time while we are all away from home. Tomorrow morning we go to the Ped Day Hospital at Sloan to start chemo round#6. We were hoping to be done with yucky chemo by now, but still thankful for the option. This round will last five days and then we will fly home to recover. Dr Modak wants us to come back in three weeks to repeat the MIBG. We are hoping at that point she will be clear and able to start the 3F8 antibody treatment. But that is jumping ahead, we still have to get through the next few weeks.
Morgan still has the NG tube in; we will keep it in for now until Morgan recovers from this round of chemo. She is doing great, feeling good, eating, she has been more active in the last few days than she has in weeks. It's good to see her dancing and having fun.

Have a wonderful week, and please remember to pray for all of the kids fighting cancer.

4-09-09
The MRI and CT scan were both clear, showing no signs of neuroblastoma. The MIBG was positive for neuroblastoma. There are more than a few spots lighting up, but overall everything is not as bright as the first scan, which is a sign that the chemo is working. We are going to stay here for another round of chemo. We will start in Monday. Morgan will get cytoxin and vincristine, which she has had before, and a new one called topotecan. We'll do the chemo here, outpatient, and then fly home next Saturday to recover.
Both the girls are ok about staying another week. Morgan and Ally can both play in the playroom at the hospital and at the Ronald, so it makes it easier to handle being away from home. Likewise for Clinton and I. There are a lot of neuroblastoma families here and it really helps that everyone knows what we're going through. We become like a family while we're here.
We are going to take the girls to Central Park tomorrow and try to do something fun before next week.
Thanks for all of the continued prayers and well wishes.

4-08-09
We had a good morning at the hospital. Morgan was able to have her MIBG scan without sedation! She has to lay on a table for about an hour and a half without moving. She able to to watch tv most of the time and she did a great job. From now on when she has this scan, she won't have to go without eating the morning of the scan because we know she can do it without sedation!
We came back to RMH this afternoon and had a nap, then Ally and Morgan played in the playroom with their friends. Ally has made two new friends this trip, Erica and Elizabeth, and the girls have had so much fun running around the playroom!
We are meeting with Dr Modak in the morning to go over Morgan's scans. Her bone marrows probably won't be in until next week.
We are not sure when we can get a flight out.....we didn't book it ahead because we weren't sure when we would be done.....so, we'll be looking for a flight in the next few days.
Morgan was walking more today but, is still sore tonight.
I'll post more when we have more info :)

4-07-09
Bone marrow biopsies and aspirates are done. MIBG injection is done. Tomorrow morning we will go in for the MIBG scan and then we are done! We are meeting with Dr Modak on Thursday morning to go over the scans, but we won't have the aspirates/biopsies back until next week. Morgan is really sore tonight. She is fine to sit or lay down, but it hurts her to get up and move around or walk. She should start to feel better after tomorrow.
Newman's catered dinner tonight at the house and then a local school held an Easter
Thanks for your calls and messages. It's nice to have so much support. We are glad to be almost done with scans and very anxious to get a game plan going.

4-06-09What a long day! We started out at Sloan at 9am and left around 6:30pm. First thing this morning Morgan's port access couldn't get any blood return (which might mean it isn't working) so our nurse spent an hour trying to get it to work. In the end, they put a drug in that breaks up clots, let it sit for half an hour, and FINALLY blood return. Since that was working, it was on to radiology for the CT scan. They were behind, so we waited an hour for a 10am appointment. After that, echo was ready for us, so we got that done and then sparklyflower was ready for lunch. After a quick bite, we met with the Nurse Practitioner....... our sparklyflower has been doing her job-her weight is up to 20.7 kg (= 45.5 pounds, an 8 pound increase from three weeks ago). By the time we finished with everything in the Ped. day hospital, we had two hours to wait until MRI. We hung out in the cafeteria and walked through the gift shop before arriving for our 4:30 appointment. At 5:45, we went in for our MRI. Morgan did a very good job- the MRI machine is very loud and you have to lay very still. She was still and actually fell asleep before it was done! We came straight back to RMH where a local place catered dinner to the families. It is so nice to come back to the house and not worry about where dinnerr is coming from. We are back in our room now, resting up for tomorrow.
It was a long day, with lots of delays, but so goes the world of cancer that we live in. Clinton and I are so grateful that we have this place to bring Morgan to. We don't mind the waiting because we know what great things are coming from this hospital.
Thanks for checking in on us, we are on our mission here in NYC. We'll post more info as it comes to us :)

4-05-09
We are in NYC! I haven't updated in a few days because we have been very busy. A & M enjoyed Easter Egg Hunting at the Children's Cancer Center on Thursday night and at Walden Lake Early Learning Center on Friday. We spent Saturday cleaning up around the house and getting ready for our trip.
Morgan has been feeling good these past few days.
We are at the Ronald McDonald House Rm# 703. We will be at Sloan all day tomorrow.. I'll post when we get some info.

3-31-09
You'll never guess where I'm writing from.............room#264 at All Children's Hospital :( We went to clinic this morning, but since our appointment was later than usual, there wasn't time to order and courier the blood Morgan needs for a transfusion over to the Tampa clinic. So here we are. In the same room we spent Christmas 2008.
It's almost 1:30 and we haven't started her premeds yet, so I'm thinkin we'll be here for a while.
Anyway, all of her other counts looks good; platelets are 337,000(way to go Morgan!) and her ANC is over 3600. And the best news of all.....she's gained almost four pounds:)
So overall, a hurry up and wait kind of day!

3-31-09You'll never guess where I'm writing from.............room#264 at All Children's Hospital :( We went to clinic this morning, but since our appointment was later than usual, there wasn't time to order and courier the blood Morgan needs for a transfusion over to the Tampa clinic. So here we are. In the same room we spent Christmas 2008. It's almost 1:30 and we haven't started her premeds yet, so I'm thinkin we'll be here for a while. Anyway, all of her other counts looks good; platelets are 337,000(way to go Morgan!) and her ANC is over 3600. And the best news of all.....she's gained almost four pounds:)So overall, a hurry up and wait kind of day!

3-29-09
We had a busy weekend and Morgan is doing great! We attended two birthday parties and Morgan had a bowling party of her own! Since I of course forgot my camara, no pictures yet, but they are coming soon!
We finished off the weekend with a carnival put on by the Children's Cancer Center. It was a lot of fun. A & M played carnival games and ate snow cones. They also had bouncy castles and a train! We also got to meet some great families who have been where we are and are so wonderful and supportive.
Morgan is going to go to school this week, and she als has clinic on Tuesday and a GI doctor appt on Thursday. She still has more and more energy everyday. We are so proud of her for working so hard :)
Hope you have a good week- pictures soon, I promise!

3-27-09
Things are still improving for Sparklyflower :)
She is doing well with the nighttime feedings, she only woke up a few times last night. She is eating/snacking all day and her tummy is feeling a little better. She still hasn't been to school, yet. She is so tired in the morning, I think a few more days with the extra calories she's getting at night and her full time energy should pick up. She is getting about 1000 calories per night and will continue until she is gaining weight back AND eating enough calories on her own.
Morgan had a nice visit from her teacher this morning and we had some friends over tonight to help paint the playhouse and have dinner. The guys got some work done and the kids had fun playing in the yard.
We have a busy weekend coming up with birthday parties and a yardsale, I'll post some pictures this weekend.

3-25-09
No school today for Morgan. She woke up a few times last night, so she was really tired this morning when we took Ally to school. She has up and down periods through the morning and gets more energy in the early evening. I'm going to let her take it easy for a few more days and build up to more activity. She wanted to plant something in the front yard, so we got a few plants and had a nice afternoon outside digging in the front garden. We all enjoyed the fresh air!

3-24-09
We are free! For a week, anyway. We are not scheduled to go back to clinic until next Tuesday. Morgan's ANC is over 5000, which means she can see her friends and go to school!
Her electrolytes are starting to get stable, she is taking extra potassium and magnesium, but everything else is fine. She had a good day today. Her activity level has increased and she is tolerating her meals better, too. I'm still giving her the extra nutrition at night though her NG tube, and I think that has a lot to do with her new found energy. We are so glad to (almost) take a breath in all of this and today was a nice day to relax.
We have a little more than a week at home before we return to NYC for scans. These are the big ones that tell us if all the chemo has been working and.....it's really hard to write this......if the cancer is gone from her bone marrow. It has been easy up until now to focus on all the other issues related to chemo and surgery, but now it's coming and I have to say, I'm starting to understand why the other moms call it SCANXIETY. Anyway, here's the schedule for NYC: We are leaving the first weekend in April to fly up; Monday: is an ECHO, CT Scan, MRI; Tuesday: bone marrows, MIBG injection (this is the material that flags neuroblastoma cells on the scan-it's given 24 hours before the scan); Wednesday: MIBG scan. After that we should be free to go and we will catch the next available flight home to wait for results. We should have results from MRI, CT Scan, ECHO before we leave NYC; the others take up to a week.
So, until then, I am going to focus on each day, and have as much fun as possible as a family, while we are all feeling well and have the extra time together.
Thanks for following our journey, and for your continued thoughts, prayers, cards and phone calls. We feel your support, and it is really appreciated :)

3-23-09
It was quiet and rainy at the Pierce Household today.
Ally had a good first day for SAT testing. She said it was "easy breezy".
Morgan is feeling good, she's a little stronger every day. Her tummy pain is about the same as it has been for a while, we're still trying to work out the right combo for her meds to help her pain.
Tomorrow we have clinic to check counts :)

3-22-09
What a weekend! Last night, Morgan's NG tube got clogged somehow and we couldn' get it fixed. Since we had to go in to ACH for labs today anyway, we decided to wait until this morning to get a nurse to look at it. So what was supposed to be a "quick run" to the hospital this morning turned in to an all day event. (Big surprise, I know)
We had to have the tube pulled and a new one placed. She was obviously not happy, but once again, she was so brave and did such a great job, it was over in less than a minute. The nurses on our floor at ACH are very efficient and good at what they do, so thank goodness for that!
By the time we were finished with that, Morgan's lab work was back- she needed platelets (they were 7,000) so we decided to stay and get them at the hospital so we wouldn't have to do clinic tomorrow.
Needless to say, an all day event, but we are home and settling in.
Ally has SAT's this week, so we are early to bed and resting up for a big week!

3-21-09
We made it home last night around seven, 48 hours in and out of the hospital- that's a record!
Morgan had a good night, sleeping almost through the night. She is up and feeling good this morning.
We are going to enjoy our weekend at home- hope you all can enjoy yours, too!

3-20-09
Morgan had an NG tube put in last night. She isn't thrilled about it, but I think she understands why she needs it, so she is willing to comply. She is still allowed to eat whatever she wants during the day and at night I will give her something like pediasure in the tube while she sleeps to help boost her calorie intake.
We are waiting on one more lab test result before we are "officially" discharged to go home tonight. Most of Morgan's electrolytes and other levels are running low, because she hasn't been able to eat as much as normal, so we are going to continue to check her labs every few days to make sure we don't get any more 9:45pm phone calls!!
She is feeling more tired today than yesterday, but that is probably because her ANC is 20. She still gets her neupogen shot everyday until her ANC is really high, something like 6000, I think. We think today is her lowest point so she should start to feel better and better every day.
Thanks for all the kind words from the guestbook, we are lucky to have so many people who care for our sparklyflower :)

3-19-09
For some reason I cannot open any of the update pages on this website, I am NOT tech savvy, so here's the new update:
We are inpatient! After a good clinic visit on Wednesday, and a good evening at home, we put the girls to bed and started to settle in ourselves when the phone rang. It was 9:45pm. It was Dr. Stapleton (oncologist) calling to tell us that Morgan's potassium was very low on her lab results from earlier in the day and we should bring her to the ER for another blood draw.............. right away. WHAT!??!
So we packed, woke up the kids, and raced to St Pete to get another blood draw. Just our luck, the numbers were right the first time. We were admitted and finally made it to a room with a real bed and sleep chair around 5am. Morgan received a potassium bolus, platelets, and just finished up a blood transfusion. She is what they call "all tanked up." She has been feeling well all day and still on the path to eating some more when Dr Mayer came to visit and decided Morgan needs an NG tube to help with nutrition. This is something that I knew might happen, but she has been increasing her diet everyday and has felt better with more energy everyday. I completely did not expect this today. Or this week. Dr Mayer feels that Morgan's weight loss is significant enough to need supplements. We are waiting to talk to the nutritionist and the GI team before we move forward, but everyone so far is pushing for it.
We have no idea when we will be able to go home. Her electrolytes and other levels are good enough, so we will know better in a day or so when we will get out of here :(
Ally was obviously not happy when we woke her up to leave last night. I think we all started to get used to sleeping in our own beds, it was a little unexpected to up and leave since Morgan had such a good night.
We are all here now, waiting.
We're still on track to go to NYC in April for scans. Hopefully we'll be able to have some time at home before we go.

3-17-09
More of the same today. Morgan is feeling OK. She is willing to eat but has a lot of tummy aches after, so that is discouraging. We will talk to the doctor about it tomorrow at clinic.
We are looking forward to her eating more and more everyday to get her energy up so she can enjoy some of this beautiful weather. I hope to get her back to school next week. Not much else to report- I'll check back in tomorrow. Thanks for keeping us in your thoughts :)

3-16-09
Clinic all day :)
Morgan needed platelets today, so we were at clinic all day. Her other numbers are holding steady, but could start to drop by wednesday. She is still moving between long naps & short spurts of energy. She is still eating, or more like snacking, but I'll take it!
She's down to two meds a day now, and overall she's feeling good. We go back to clinic on Wednesday to see if she needs any blood products and to follow her ANC.
Happy St Patrick's day tomorrow! Don't forget to wear your green :)

3-15-09
Another nice day at home! Morgan was feeling better this afternoon than she has in a few days. She ate more and talked more and even played a game of monopoly with her Grandma! Tomorrow is clinic, we will get her hydrated and check counts. It is such a relief to see her up and talking and starting to eat again.

3-14-09
Thank you so much for all of the birthday messages, cards and well wishes for Morgan!
Her day was good, with long naps in between short spurts of energy. She has started to eat just a little bit of food every few hours and we are working on keeping her hydrated. She wanted to go to the mall yesterday, so we put her in the stroller and walked her around. It was good for her to get out of the house for a while. At home she was able to sit up and open presents and play with her barbies, but mostly just wanted to sleep.
This morning she woke up rested and sat up to play computer and even had eggs for breakfast! She is sleeping now.
Morgan is still on round the clock meds for nausea and will stay with that for the next few days. If we can keep her from getting sick and keep her hydrated, we might make it to Monday before we go in to clinic.
Clinton and our friend Sam are working on the playhouse today, and I'm trying to talk Morgan into going up to help us paint once the walls are up:)

3-12-09
One more day until Sparklyflower turns 6! I can't believe her birthday is already here. The last few months have gone by so fast it seems like yesterday we she was starting kindergarten and now the school year is half over and she is going to be six!
She has been sleeping most of the day. I took her to buy some balloons and streatmers this morning to decorate the house. Her teacher came by this afternoon and they planted sunflower seeds together and read all of the cards her friends from school made for her. Overall a much better day than yesterday. She isn't ready to eat, yet, I'm hoping she'll try some birthday cake tomorrow :)
The nausea should only last for a few more days and then she'll start to feel better. As long as she doesn't get any more dehydrated we won't have to go back to clinic until next week!

3-11-09
Today was a very long day. It started out with Morgan very tired and dehydrated. She slept most of the morning and afternoon getting sick in between and not wanting to eat or even smell food. Clint came home from work early this afternoon to help me with Morgan. Her counts were still good today at clinic but because she was dehydrated we stayed late for her to get IV fluids. She felt much better afterwards and now she is sleeping soundly in her own bed.
Ally is great. She is enjoying being back at school and being able to play in her backyard. It feels good to be home.

3-10-09
Morgan is feeling tired today. She has been sick a few times and her tummy hurts after she drinks her orange juice (other than water that's all she'll drink). She has been sleeping a lot and sitting up for brief periods throughout the day. The cisplatin she had can cause severe nausea so I'm not pushing her to eat, just to drink so she stays hydrated. Clinic is tomorrow, her counts probably haven't dropped too much, but we'll find out for sure. Thanks for your posts in the guestbook! We know how lucky we are to have so much support :)

3-09-09
We made it home this morning around 4am and we are so glad to be here! Morgan has clinic on Wednesday to monitor counts. We are going to relax this week and enjoy our home and this great warm weather we're having :)

3-08-09
Going home in the morning! Morgan finished her last dose this morning around 3AM, she needs to hydrate for at least 24 hours afterwards, so we will head home after 3! It sounds a little wierd to leave in the middle of the night, I'm sure, but if we don't leave when we're done at 3, we will have to wait on the docs to get here Monday morning and that could mean we would be here 'til noon--no sense in that! We will all sleep better in our own beds anyway, so we will get home Monday morning and sleep in without any beeping machines or techs coming in for blood pressures. Morgan is sitting up in bed playing this morning. She is gettting sick every few hours so the hope of her eating anything anytime soon is gone. She will still drink for me, though, so that's good enough for the doc. Yesterday they let us gown her and put her in a wheel chair and take her out of the room for a little while. She enjoyed it and it was nice to see her moving around more. Nothing really exciting going on, I hope to report lots of fun stuff as we get home and (maybe) settled for a few weeks. Please hope and pray for no fevers--we aren't scheduled for anything other than clinic visits until the first week in April--then we will go back to NYC for scans & marrows. No fevers= happy Morgan @ home!

3-6-09
Yesterday's post has dissapeared on me. I fell asleep typing last night, and when I woke up this morning...it was gone-Sorry! Technology and me don't always get along so well.......any way!
Morgan had a good day yesterday. She was up watching tv and coloring. She also watched her spanish lesson on the computer! They were able to record the lesson and Morgan watched it through videoconference. She was very excited to see everyone, it is great that she can experience some of what she is missing from school while we are inpatient. Thanks, Mr Kane!
I'm still begging Morgan to eat, as we are entering "hospital mode". The menu for kids here is great- they get room service- anything they want any time between 7a-11p, but she can never find anything she wants. Yesterday it was "Dora yogurt". That's all she wanted, so thanks Ms Sharon for bringing it up along with some other foods she likes.
Morgan started to get sick to her stomach last night, so in additon to the round-the-clock zofran, we gave her some benadryl. As usual, it worked like a charm and she settled in nicely for an evening of wheel of fortune and stories!
Today is Clint's birthday...it's funny how our list of "special" days spent in the hospital keeps growing. Trust me- I'm not complaing. We have been able to stay together as a family for these special days, and for that, we are greatful. So, Morgan is excited and has a very special present for him when he gets here! She still assumes that if you're having a birthday then you're having a party :) Looks like it'll be an ACH party for Clint this year as he will be sleeping over w/Mo tonight so I can spend some time at home with Ally. Thanks for checking in :)

3-4-09
Since Monday was Dr Suess' birthday, the kindergarten classes at Morgan's school had pajama day and read Dr Suess stories in the library. Morgan couldn't go to school becuase she was at clinic, but she wore her pajamas all day anyway! She loved to get up and go this morning without having to get ready :)
Her platelets were 125,000 at clinic this morning, so we are now inpatient at ACH and waiting to start round #5. She is a little dehydrated, so they are pumping her up with fluids before they start. She will recieve two infusions per day for four days and then a full day of hydration at the end. That should put us going home by Sunday-Monday. (hopefully)
She is in good spirits tonight, reading me stories and coloring :)

3-3-09
Good day today! Morgan went to school almost all day today, and she is finally eating on a more normal schedule. She feels good except for some tummy pain, and she'd still tired every few hours and needs short naps through the day. We are going to clinic in the AM to check counts. If her platelets are 75,000 or higher, we will go to ACH for round #5. I'll let you know tomorrow.

3-01-09
The roof is up! Thanks to Uncle Frank and Jason for working on the playhouse on Saturday......the roof is up, and Ally and Morgan are so excited!
This afternoon the girls got to work with their Daddy painting the wood for the outside walls...... It was a good project to get Morgan up and moving. She is still tired through the day but we are trying to encourage her to get up and move around more.
After a short rest, we went to the Strawberry Festival! It was chilly, but we all bundled up and had a good time. Morgan rode on the ferris wheel and Ally tried out some of the fast rides! Then we enjoyed a yummy funnel cake....and... can you believe...DEEP FRIED CHOCOLATE CHIP COOKIE DOUGH.......YUM :)We walked around the exhibits and looked at the bunnies and chickens before heading home. We had an awesome weekend, hope you did, too!
Thanks for sharing on the guestbook, and thanks for showing how much you care :)

2-28-09
No platelets! Morgan didn't need any platelets yesterday. Dr said her bone marrow is "waking up" and she is making them on her own! Since we rec'd such great news at clinic, Morgan spent another half day at school. She is starting to eat more regularly and that is giving her more energy. Thanks for supporting us....have a wonderful weekend :)

2-26-09
What a busy day! Morgan spent half a day at school today and she had so much fun with her friends. They did a science project with hot and cold, and they played in spanish class and p.e. It was definantly more acitvity than she is used to, so of course she is sleeping on the couch as I write :) We also went to Publix after school. After begging Morgan to eat for what seemed like an eternity, I resolved to trying to get her to at least drink some Pediasure. I walked her up and down every aisle just in case, and she picked out lots of good food that she to eat! I was so glad she even showed an interest, hopefully this will kick start a weekend of good eating!
Clinic is tomorrow morning, she may need platelets, and then off to school for Fun Friday!

2-25-09
Good day at clinic! All of Morgan's counts are up except for her platelets. We decided to check her platelets again Friday morning and transfuse then if she is still low. They called for a bed on the hospital floor for next Wednesday. That is when we should start round #5. She is still very tired and not eating as much as I would llike, but that should improve in the next couple of days.
Morgan will spend some time at school during this week and next. This weekend we are going to try to get her up and moving around more and maybe have a playhouse work day this weekend to get the roof up.
We are so glad to be able to be together in our own home :)
Have a great week!

2-24-09
Still Home :) Morgan is feeling OK today. She is really tired and not as hungry as I would like for her to be, but she is eating some. She has clinic in the morning, so I am planning for a long day. I'll let you know how she's doing after clinic tomorrow.

2-23-09
We have our walking papers!!! Morgan is feeling well enough to go home! She had some vomitting this morning, so she's not ready for a meal yet, but she is drinking so we are going to try this at home. I'm hoping once she gets comfortable there, she'll feel better and be more active (and hungry). Her ANC is on the rise so that should help, too. It has been a long visit and we are ready to get out of here!
Morgan goes back to clinic Wednesday, and probably every second or third day until her counts are ready for round# 5.

2-22-09
Morgan is feeling better today. After a visit from the doctor this morning, she started eating and is sitting up some more. I misunderstood the nurse yesterday and thought Morgan's counts were down to .03, but they were actually .36 which is higher! Today her WBC count is up to .54. Her ANC is over 500! This would mean we could go home, except she is still on IV pain meds and hasn't eaten in three days. Hence the chicken nuggets she chowed down on this afternoon. She was also having trouble keeing her oxygen level up, but after a little more movement and some sitting up that seems to have fixed itself. We should (if her counts continue to rise) be able to go home tomorrow. She will probably have to go to clinic every other day until she is strong enough to start the fifth round of chemo. Thanks for checking on us! We are going a little stir crazy in this place and we are VERY hopeful that we will go home tomorrow while we wait for the numbers to be ready for her next treatment.

2-21-09
We are STILL at the hospital. Morgan's WBC count is back DOWN to .03 which is NOT an improvement. The Doctors think her body is using up white cells as fast as she can make them (which is not very fast) to help her heal from the surgery and to heal her sore throat. Her platelets and hemoglobin are holding steady so we are glad for that. We haven't seen the doctor yet this morning, but we are sure we will be here for another few days.
In order to start chemo on Wednesday her ANC (now zero) has to be 750 and her platelets (now 28,000) have to be 75,000. As much as we would love to take Morgan home, please pray that she is ready to start her next chemo on time or as close as possible. Even if it means we have to stay here for another week, we don't want to give extra time for any cancer cells to start floating around again.
Morgan is back to feeling really tired and is still not eating very much. Her throat is still sore, so she has pain meds for that.
Ally had a fun sleepover with a friend last night and Clint and I will alternate nights with each of our girls over the weekend.
Thanks for checking in.
Walden Lake Elementary is the best school on the planet! We love our school and they have shown Morgan how much they love her........
Each heart is signed by someone who cares for Morgan. Thank you Walden Lake Elementary for showing Sparklyflower your support :)

2-19-09
Sorry about yesterday. I posted in the afternoon, but I guess it didn't publish because I can't find it anywhere!
Morgan is the same. She is still receiving IV nutrients and eating some. Dr Grana is slowly taking down her pain meds and Morgan seems to be tolerating it well. Her throat still hurts but only when she swallows food or water. Her WBC count is .03 which doesn't even put her on the chart for neutrophils. The neutrophils are what she needs to go home. We were hoping she would be higher than .03 by now, but a lot of other neuroblastoma parents warned us that her WBC count will take longer to increase with every chemo.
We are all really just ready to go home. My goal for now is to go home sometime Saturday...let's just hope her body responds to my schedule :)
Ally is doing good, she is back at school and Clint is back to work. Thanks for checking in!

2-17-09
Morgan had a good night last night. She is more comfortable now with the pain meds. She ate a little bit yesterday afternoon, but nothing since then. Dr Grana is going to put her on a TPN, to give her some nutrients so she doesn't have to worry about eating. When her WBC counts start to come up, her pain should go away and then she will feel like eating again. We know the drill, as this all happened after the first and second round of chemo, it's just taking a little longer to heal this time. Dr Grana says she thinks we will be here another 3-5 days. Morgan's next and hopefully final round of chemo is scheduled to start next Wednesday.

2-15-09
Still here! Last night was a long one for Morgan. Her hemoglobin and platelets were so low that she needed transfusions of both.
Her platelets were still low this morning, so she rec'd another six units this afternoon. She is still tired and napping through the day. Her throat is really hurting, probably from the chemo, so the Docs gave here some pain meds to keep her more comfortable.
She still isn't eating, but she drank some milk for me today, and she's keeping up with her water intake.
We'll check counts again, everyday, until the Doctor decides she can go home. She doesn't have any neutrophils as of this morning and those are the ones that we are watching.
On a side note.... I went down to the cafeteria to get some lunch, and when I went to the clerk to pay for my food, she gave me the employee discount.......because she sees me so much she THOUGHT I WORKED HERE........you know you have spent TOO MUCH TIME in a hospital when the food staff thinks you work here!!!! And no, I didn't get the discount in the end because she noticed my visitors badge while I was paying. Maybe next time :(

2-14-09
Back in the hospital again; or as my friend Fran would say "La Inpatiente". Morgan was up twice last night with nosebleeds so she slept most of the day today. She had a fever of 101.6 around five o'clock, so we new she would need to bring her in for cultures. They will give her fluids and platelets tonight, and we will hang out here until we hear back about the cultures AND her counts start to trend upwards. I think this will probably be around Tuesday or Wednesday. They haven't given me a copy of her counts from today, but I'm guessing her ANC is below 60 and her platelets low enough to need an infusion.
We had a good time at home while it lasted! Ally played outside today and helped her Daddy in the yard. Morgan got to sleep in HER OWN BED and on her own couch. We had a nice Valentine's day together today. We hope you all did the same.
Happy Valentine's Day :)

2-13-09
We finished clinic this morning and Morgan has been resting on the couch all afternoon. Her ANC is 60, so she can't have visitors this weekend :(
Her platelets are low, but not enough to need an infusion, so we will keep a close eye on her this weekend and, if we're lucky, we'll make it to Monday before we have to take her back in.
She is comfortable, but very tired. Her tummy is starting to feel a little better.
Hopefully her counts wil start to come back up next week and she will get some energy back and start to feel better.
Thanks for checking in on our Sparklyflower :)

2-12-09
Morgan had a restful day. She took long naps throughout the day. She sat at the table this morning to make home made brownies with Valentine's Day sprinkles. She's been wanting to do that since we were in NY, so she finally got her wish :)
This afternoon, she sat outside to watch Uncle Frank work on the playhouse. It was nice to have her out in the fresh air for a while, I really think it did some good.
Her tummy is still causing her some pain, but other than that, she doesn't have any pain, just tired.
Ally had a fun day playing in her room and outside and working on her writing.
We will all go to clinic tomorrow morning to check counts. I'll let you know how that goes!

2-11-09
Clinic was good today. Morgan didn't need any blood or platelets. Her ANC is still up so she could go with us to the grocery store and she picked out some foods she would like to eat. She is still feeling very tired so I'm hoping she'll keep eating between naps in order to have some energy as her counts start to fall. Thanks for checking in :)

2-10-09
We are Home Sweet Home once again!
Someone very sweet put these signs up for A & M- thank you! It was fun to come home to! It was a long day today, but we made it home safely and we are so happy to be here!
This journey to NY was a very difficult one for all of us. We went into this not knowing for sure what Morgan was facing in terms of surgery and recovery. We are so proud of our Sparklyflower for all the hard work she did to recover so quickly. It was nice to hear the doctors surprise at how quickly she recovered.
We are so very proud of Ally, too. She spent a lot of time in the playroom at Sloan making new friends and was very willing to help with her sister in the hospital and at RMH.
Morgan is really, really tired, probably a mix of the events of the last week and over-doing it some at the RMH. Her legs are causing her some pain- the docs think it's related to the vincristine(chemo). Thankfully, she is eating and drinking :) She has clinic tomorrow, to check counts and see if she needs any blood products.
Clint is heading back to work in the morning. The girls and I have a lot of unpacking to do! I'll post tomorrow to let you know how clinic goes.
Thanks to Grandma Peggy and Grandma Lana for helping out during our stay in NY, and thanks to everyone for all of the cards, letters, thoughts and prayers we received during our New York stay. We are so humbled by the outpouring of love from our friends and community.

2-9-09
It was a long day at the hospital today, but we have good news! The pathology reports are in from surgery and they show that the chemo is working! Her liver and spleen biopsies were benign (not cancer) and the lymph nodes that are involved are showing positive effects from the chemo. The mass seems to be ganglioneuroblastoma, which means it was part benign and part malignant. This doesn't change anything as far as induction therapy, but it's nice to have the info.
The best part- the results from her HVA-VMA- (high numbers on this test are a sign of neuroblastoma).
HVA from January was 22 with normal being under 17, February result: 9!
VMA from January was 27 with normal being under 8, February result: 13!
We are so encouraged by this positive information from today!
Today, the doctors unhooked her fluids backpack and gave us the OK to fly home. Her counts are still up but we expect they will drop by Wednesday. Morgan has eaten something at every meal and is feeling good. Ally is ready to go to the playroom and play with her friends ONE MORE TIME before we leave for home tomorrow!
Thanks for continuing to check in on our Sparklyflower! Please continue to keep all children facing this horrible disease in your thoughts and prayers.

2-8-09
For those of you who keep checking I will give a short update until Emily has time to post a better one later. We are out of the hospital! back at RMH Morgan still needs fluids so they sent us out with a backpack with a pump and a bag of fluids in it with a line still hooked to her port but that did not stop her from deciding on her own to walk TWO flights of stairs down to the playroom while Emily cooked macaroni and cheese. Maybe Em will post more later she's kind of busy trying to keep up with her online classes at HCC along with everything else. Bye!

2-7-09
Today was a restful one for our sparklyflower. She has a little cold and she is tired from all the hard work she did this week. We watched tv and took a long nap this afternoon. Tomorrow we should go back to the RMH :)

2-6-09
Fever :( Yesterday afternoon, Morgan developed a low grade fever. Since she has a mediport, blood cultures are drawn to look for possible infections and antibiotics are given as a precaution. Unfortunately, because we are using her port for the chemo, she had to get an IV for the antibiotics. This did not make Morgan happy. She was such a brave girl, though and the IV Nurse did a great job making the stick as quick as possible. The fever also afforded us a private room, which means Ally can come into the room anytime to play with Morgan :)
Morgan had a good day today, she played volleyball and bean bag toss with Ms Regine (physical therapy) and board games with Miss Stacie (occ therapy). All of her doctors are pleased with her progress. She still has some fluid on her lungs, so we are encouraging her to move around and do her exercises.
Ally is doing well, she is watching Hotel For Dogs at the RMH tonight with all the other kids and siblings who are at the house.
Thanks for all the cards and well wishes, we enjoy reading them!

2-5-09
Day one has started.....Physical therapy came in early this morning to help us get Morgan out of bed and moving around. She played a lot of games and walked to the playroom and back. She is still very sore and working out tummy troubles, but we are so proud of her for working so hard.
We are in a semi-private room, so Ally is not allowed to visit Morgan in here. Thanks to the child life staff, we were able to close off the playroom for an hour so the girls could play together. Hopefully we will be able to do the same tomorrow and Saturday.
Even though she isn't in the room with her sister, Ally is having lots of fun playing with her new friends here in the hospital playroom and at the RMH playroom.
We're counting down the hours..........

2-4-09
Our new home is room#921B on the pediatric floor at Sloan. Morgan is slowing down a little today. She is having some pain and she is a little more tired today. We have physical therapy and occupational therapy working with her to help keep her moving.
Chemo will start tomorrow. It is three days of dox/cyclo/vincristine. She has had these before so we sort of know what to expect. We should be finished by Sunday afternoon.
Thanks for all of your posts in the guestbook!

2-03-09
You should see our girl now! She had both chest tubes taken out this morning and she is up and walking around. She is feeling good considering the events of the last few days and we are very encouraged.
Morgan was moved over to the Pediatric Observation Unit at Sloan yesterday afternoon. The staff here are wonderful. They are helping us get Morgan moving so she can begin to heal. She is still on (minimal) oxygen and pain medication, but she is eating and drinking and playing games. She is in good spirits and talking and laughing.
Morgan made a discovery while she was eating her lunch.....one of her bottom teeth started to wiggle. She is very excited about this prospect. We reminded her that the tooth fairy comes to the hospital, too.

1-31-09
It took a very long time for Morgan to get over to NY Hospital last night and an even longer time getting her settled in. She had a rough time most of the night while the doctors figured out what pain medicine worked best for her and how to keep her comfortable.
This morning was better, they were able to extubate her early, so she is able to talk to us. She is still hooked up to lots of hoses, that are measuring all of her vitals and managing her pain. Dr LaQuaglia stopped by to see Morgan today. He was pleased with how well she is doing. We are hoping she will transfer back to Sloan early next week.
NY Hospital doesn't have wi-fi so we borrowed a computer to post. Sorry it took so long to post a message- we needed to catch up on some sleep this afternoon, just incase we have another long night.
Thank you for your posts; we are so encouraged by all of your thougthts and prayers for our sparklyflower.

1-30-09
8:30am
Morgan is in surgery. The nurse will come down to give updates every few hours. Dr LaQuaglia wouldn't predict how long it will take. He has a lot of work to do in order to remove all of the mass and keep her safe. I'll let you know when we hear something.11:30
She's still in surgery and she is stable.
1:30pm
The bulk of the tumor has been removed; they are not finished with everything yet, hopefully within a few hours she will be done. She is still stable.
4:30pm
She's done! We haven't been in to see her yet, they are finishing up in the OR. Dr LaQuaglia was pleased with the surgery. Morgan did very well. She lost only a minimal amount of blood, and her blood pressure was stable throughout. Dr LaQuaglia was able to remove the entire mass and also one of her adrenal glands. She still has another adrenal gland, that thankfully is fine to keep. All of her other organs looked good.
We are waiting for the ambulance to arrive to take her (and me) to New York Presbyterian Hospital Pediatric ICU. Clinton, Ally & Grandma's will walk over to meet us at NYP hospital, which is across the street.
Thanks for all of your thoughts and prayers throughout this difficult day.

1-28-09
Lots of information today. Dr LaQuaglia went over the specifics of surgery. We are first call Friday morning which means Morgan is the first surgery. He is estimating it could last anywhere from six to twelve hours. The tumor itself isn't really any smaller, but that might be because neuroblastoma cells can secrete proteins; the bulk of the tumor may be made up of these proteins. She will have her surgery here at Sloan, then she will be transported by ambulance to New York Presberterian Hospital to the pediatric ICU. After she recovers, she will come back to Sloan for observation. The tumor is sizeable, as far as we know , it doesn't encase any organs, mostly the arteries and nerves for her kidneys, liver and bowels. We are hopeful for a total tumor recection, but Dr LaQuaglia will only do what is safest for Morgan.
Today, Morgan needed blood, so we have been at Sloan all day. Ally made a few friends in the playroom, and we watched a local performance group, White Tiger, give a Chinese New Year dragon dance and parade. It was really fun, and Ally even marched in the parade :)
Tomorrow we will sleep in and have a restful day for Morgan.
Thank you all for continuing to check in on us, and for keeping us in your thoughts and prayers.

1-27-09
New York City is COLD, COLD, COLD! We flew in late this afternoon. The flight was nice, even though it took half hour longer than usual. It is very overcast here and the low tonight is 29 degrees :{
We checked in on a good night...a local company hosted a "candyland dinner" here at the RMH. Pink and Green candy decorations covered the walls and tables, candy themed music blasted from the radio, and after dinner, we snacked on ice cream sundaes, cupcakes, candy apples, and bags of candy. And of course, Ally and Morgan played the candyland game!
Tomorrow morning we will meet with Dr LaQuaglia, the surgeon, to discuss Friday's surgery. We are looking forward to meeting with him and having all of our questions answered.
If you would like to send something to Ally and Morgan you can send it to: Ronald McDonald House
c/o Pierce Family
Rm# 807
405 East 73rd St
New York, NY 10021

1-26-09

Clinic went well, Morgan's counts are all up!
Ally is feeling OK, hopefully a good night sleep and some medicine will help her feel better by tomorrow.
We are getting packed up tonight, we leave tomorrow at noon. We meet with the surgeon on Wednesday and Surgery is scheduled for Friday.
I'll let you know when we are settled at the Ronald.
Thanks for your prayers, we are so greatful for friends and family and our wonderful community!

1-25-09
Project Playhouse started this weekend: I've been bugging my husband for years to put a roof over the water pump in the backyard and he finally listened!
Uncle Frank, Uncle Cliff and Clinton got to work on Saturday to build a playhouse for Ally and Morgan. The girls are so excited!
Thanks to Jason for coming over today to lend a helping hand. What an awesome job so far! I can just see those girls playing barbies up there!
Morgan had a rough start this morning with some nausea, but after a little medicine she perked right up and played outside with Ally and Aubrey all day. The girls made cookies and played Barbies and also hide and seek.
Ally was feeling better until tonight, she has a sore throat and is starting to lose her voice :( Hopefully she's not coming down with something.
Morgan has clinic in the morning to check counts, then we will get ready for our trip on Tuesday.

1-23-09
It had been a very busy couple of days. Both Ally and Morgan enjoyed being at school this week. It was nice to have our little routine back for a while :) Sorry we brought so much cold weather back with us; we are hoping to enjoy some warmer Florida weather before we go back to the frozen north!
Morgan is feeling great, she is full of energy and enjoying herself very much!
Have a very good weekend!

!-22-09
We are home! We flew in last night, the flight was great. We are so glad to have a few days to rest.
Ally went to school today, and so did Morgan :) Morgan was able to spend the whole day at school and had so much fun! She was really happy to see her teachers and all of her friends!
Thanks for checking in!

1-20-09
Good News! They were able to collect enough stem cells from Morgan yesterday! That means that she doesn't need to harvest anymore while we're here.
Morgan was such a big girl and drank all of the contrast very quickly this morning, so her CT Scan went well.
She finished that up and got platelets, then they de-accessed her port and sent us home!
We are going to come home tomorrow until Tuesday, when we will fly back up to NY to meet the surgeon (Dr. LaQuaglia) on Wednesday (28th) and have surgery on Friday.
This is a good chance for us to have a few days at home, and do some normal things like go to school and play at our own house :) We are already a little homesick.....
We may start a little outdoor playhouse project for the girls this weekend...I'll post more on that later.....

1-19-09
It is very cold in NYC!! We all have the sniffles from the weather change, but thankfully, Morgan was still able to have her procedure done. Unfortunately, Ally had to spend the day at the Ronald Mcdonald House because she was coughing :(
We ran back and forth from the IV room for lab work to before and after x-rays for Morgan's line placement all morning. They started the stem cell harvest around 2:30, and Morgan didn't have her first meal of the day until four. We got back to the RMH at six. It has been a very long day :)
Her stem cells will be counted in the morning, we will know by then if they need to collect again. She also has her CT Scan in the morning (with the icky drink).
Ally is feeling better tonight and Morgan is resting comfortably, and of course, they are watching Disney channel (BIG surprise!)
Thanks for checking in, I'll post more tomorrow.

01-18-09
We're here! We made it safely to NY. We are settled in at the Ronald Mcdonald house. There is snow on the ground here and Clinton took the girls downstairs to play in it. Tomorrow is a big day, so we are going to rest up this evening. Ally and Morgan are looking out the window at a little girl in the building next to us. She is blowing bubbles out of her window and they're watching the bubbles float around in the sky :)

1-17-09

Yesterday, Morgan needed blood and platelets, so we were at the clinic all day. They premedicated her with hydrocortizone and benadryl and she didn't have any reactions. She was feeling really good when she we got home last night.
She and Ally played at home all day today, while I packed our bags and Clinton took care of odds and ends with the house.
We are leaving TIA tomorrow morning and should be in NY by noon.
Thanks for checking in, please pray for a smooth week for Morgan.

1-15-09
We have had a very busy couple of days! Morgan went to school for a little while both Wednesday and Thursday. She really enjoyed seeing her friends and her teachers. It's so cute to watch the kids get really excited to see her and call out her name, then fall back into place like she only missed a day!
Ally has been to school all week, and she went on a field trip to the Mueseum of Science and Industry with her class today. She had lots of fun. Her favorite part was the "hurricane room" where it's "SO WINDY"!
Clinton and I took the girls to the Children's Cancer Center in Tampa tonight for dinner. The Center offers this twice a month to families currently undergoing treatment in the Tampa Bay area. After we ate, the girls played downstairs with other kids and Clinton and I went upstairs with the other parents to share stories. We all had a very nice time and look forward to going again. It is nice to have a resource that includes our whole family.
Tomorrow is clinic day. They will check counts to see if Morgan needs any blood or platelets.
We leave on Sunday for New York. Morgan's stem cell harvest is scheduled for Monday, then she will have a CT Scan on Tuesday. She has to drink the icky contrast for that one, so pray that we can get her to drink it all in the right amount of time. After the scan we will wait for surgery. Her scheduled date is January 30th.
I know this was a lot, we have tried to let the girls have freedom to choose what they wanted to do before we leave for our long trip.
Please pray that all goes well and we come home soon!

1-13-09
Hello! Clinic went well this morning, Morgan's ANC is still really high and all other counts are dropping. She needed platelets today, and we had to wait a couple of hours for them to be sent over to Tampa clinic, so Morgan went to school! She was so excited to see her friends and learn some math in her classroom.
She recieved platelets around 2pm and they like to watch for about thirty minutes after just in case of a reaction. She has never had a reaction before, but today, five minutes before we were set free.....literally....five...minutes....she broke out in hives on her arm :( Poor baby, she wasn't in any pain, but we were at clinic for another three hours while they gave benadryl and hydrocortizone to make the allegic reaction go away. She slept off the benadryl on the way home, and ate a good supper before going to bed. From now on, they will premedicate her before she gets platelets or blood.
Yet another learning experience on this crazy road!
Hopefully, she will be able to visit her friends again before we leave for New York this weekend. I'll try to get some pictures up before we go.......

1-12-09
We had a good weekend, Morgan and Ally played outside in the warm sunshine this weekend!
Ally is feeling better and she has given me her cold :(
Morgan continues to feel well. We have clinic tomorrow, her counts are probably down by now. We will increase her GCSF injections before we leave on Sunday for NY, so that when we get there, her stem cells should be ready to harvest.
We still don't know if they can move up her surgery, we should know by the 20th.
Hope you enjoy your week!

1-09-09
Counts are still up! Morgan had clinic this morning, her counts are still up and she is doing well She is still a little tired, but that's normal. Ally is feeling better, too.
We were so excited when they said we could go home :)
Today is a good day!

1-08-09
We are happy to be home! Morgan is feeling well, not hungry yet, but she's drinking. Allison is sick with a sore throat so they have been confined to their own bedrooms today with portable dvd players and barbies :) Hopefully some medicine will clear her up so they can play together tomorrow!
We have clinic on Friday to check counts.
Thanks for checking in....we are enjoying our time at home!

1-7-09
Five minutes to go !
Morgan finished up her last dose around eleven last night, she has been on special fluids since then to replace some of the potassium/sodium/dextrose that she lost because of the chemo. She will be done hydrating at 8pm then we can go home!
She is feeling well, she has been really tired most of the day and she still isn't eating, but as long as I can keep her hydrated we should be OK.
This is pretty intense chemo so her low energy level is normal. She may have some severe nausea/vomiting a few days from now, so they have given me plenty of medications to give her to help keep that in check. Dr Reed said this morning that Morgan looks really good for going through such intense chemotherapy.
She is a strong little girl :)
The results from her bone marrow biopsies are still positive for neuroblastoma, but there are only small clusters of disease. Dr Modak at Sloan says that it may just be too early to see results. She still has surgery and two more rounds of chemo scheduled. Her marrow is still OK to harvest, so we are going back to NY to have that procedure on January 19th.
I'll post more tomorrow.....

1-06-09
Morgan has finished three doses of this chemo cycle with one more to go. Since we didn't get started until late Saturday night, her last dose will be given late tonight. She has to stay on fluids to hydrate for several hours after her last dose, so we will be here until late Wednesday night or early Thursday morning.
Morgan is still feeling good, she's sleeping a lot and not eating as much, but this is a hospital and that means hospital food. I think (hope) when she gets home she'll have me (gladly) running around the kitchen like a short order cook :)
Ally went to school today, she is excited to see her teachers and friends.
Thanks for continuing to post, we enjoy reading them.

1-05-09
We had lots of fun with our visitors yesterday:)Morgan is doing well, she feeling good.
We were spoiled last week spending so much time away from this place, we are already ready to go home! Morgan still isn't allowed to leave the room, so our huge private room gets a little smaller every day! The girls are keeping busy, though with video games and crafts.
Thanks for checking on us :)

1-3-09
Morgan is inpatient at All Children's Hospital. Her hemoglobin is low so she will get a blood transfusion before she starts her chemotherapy. Morgan is feeling good and happy. She and Ally are devouring hamburgers and baked potatoes at the moment. They are keeping busy watching movies and making crafts.
Morgan can have visitors as long as you are healthy :) We will be here for at least four full days, depending on when they start her chemo, we will probably be home late Wednesday night.
Please continue to pray that she can tolerate these drugs well and for all the other children facing cancer.

1-2-09
We took Morgan to clinic this morning and her counts are good enough to start the third round of chemotherapy.
She played with her sister and cousin this afternoon and we took her to her favorite restaurant, Red Lobster, for dinner while she is still feeling good.
We are going to the hospital tomorrow morning and we expect to be there for about five days.
Thanks for continuing to post, we still read all of the posts with Ally and Morgan everyday :)

If you can't see the video try this link:

1-1-09
We went to uncle Aaron's house for some fireworks and marshmallow roasting on new years eve. We were worried about this being too taxing on Morgan but she showed us that after all she's been through her strong little spirit is still VERY well!

12-31-08
We're home! Just wanted to let you know- we made it home, we are unpacking/playing and trying to schedule the next doctor appointment. We'll post more later :)

12-30-08
We are back from the hospital. Morgan did great. We met Dr Kushner, he did the bone marrow biopsy. Everything went as planned and we were in and out in about two hours. Morgan is happy to finally eat, and she is resting now. We should know te results of the biopsy by Tuesday of next week. We are heading home tomorrow and can't wait to get there!

12-29-08
We had our doctors appointment today. Dr Modak is wonderful! He is very thorough with all of the plans for Morgan's care. They are going to do a bone marrow biopsy and aspirate tomorrow. We will fly home on Wednesday morning.
We will come back in two weeks for the stem cell harvest. We are harvesting stem cells to keep just in case we need them in the future. The plan is to have a third round of chemo at ACH in St Pete and then surgery in NY. After she recovers from surgery, she will have a fourth round of chemo in NY then fly home to recover from that.
Morgan is feeling good, she is happy to be pushed around in the stroller while the rest of us wear out our shoes :)
Ally is keeping busy with her video games and dolls.
We tried to make the best of this trip and enjoyed the city very much, but we are ready to go home!
I'll post more tomorrow after the biopsy.

12-28-08

Today was a free day, so we got up this morning and set out to explore the city. We went to Central Park and looked at all the trees and ponds and bridges with all of the tall buildings as a backdrop. After that we went to Fifth Avenue and took a walk through FAO Schwartz and around all the tall buildings. Morgan felt good today. She walked around the toy store and rode in the stroller in the park. She had a very good nap this afternoon.
The weather is nice here, we were able to walk around without our jackets for a while.
Hopefully tomorrow will be nice, too. The hospital is walking distance from here. Our first appointment is in the morning. We will post more when we finish up from that!

12-27-08

We are in New York! We arrived this afternoon and we are settling in at the Ronald McDonald House. Ally and Morgan loved the plane ride and are excited to see the city.
Morgan took a nap on the plane ride and also when we got to the RMH. She is feeling good today :)

12-26-08
Counts are up! We are OK to fly to New York. We leave at 6am tomorrow. Will post more when we get there :)

12-25-08
Merry Christmas!
We are home! Santa came to visit Ally and Morgan at ACH this morning. He ate his cookies and milk, too! We had fun opening gifts this morning and were very happy to be going home today.
Morgan is doing well. Her counts have come up a little more. She continues to have some pain in her jaw while she is eating, but her new medicine should help that go away by Saturday. We are unpacking so that we can re-pack for the cold weather ahead. Tomorrow Morgan goes back to St Pete clinic to check her counts before the flight. Hopefully, we will be able to relax a little tomorrow afternoon before the trip. We leave very early Saturday morning.

Both A & M are excited to see the city but anxious to fly on the plane. It will be an adventure!
We are looking forward to meeting the doctors in New York and continue Morgan on her path to rid her of this horrible disease.
We are meeting so many families in and out of the hospital who are dealing with pediatric cancer. They really have been a blessing to us, answering questions, and just being there to share stories. During this holiday season, please continue to pray not only for Morgan's health and comfort, but for all of the children and families who are facing pediatric cancer.
We wish you blessings and happiness now and in the
New Year!

12-24-08
We are having Christmas at ACH this year!
Dr Grana would like for us to stay here another 24 hours on IV antibiotics because of the scrape on Morgan's elbow. She thinks that once the white counts come up it may look worse, so another day of IV antibiotics will do it some good.
Morgan's counts are rising, they went from .06 yesterday to 2.1 today. Her platelets dropped again, so she had another transfusion this morning.
She is feeling better today, still having some pain, but not as much. She was able to eat more at breakfast and lunch today. She was also up and moving around this morning.
Ally is happy and keeping busy and she will spend the night here with us so Santa doesn't have to make two trips for the Pierce family ;)
We should be able to go home tomorrow afternoon, just in time to pack and leave for New York! We should be able to update while we are in NY.
Merry Christmas Everyone!

12-23-08
Lots of information today! We are not going home today and probably not tomorrow. We are trying to get her stable enough to go to New York.
She is still having significant pain in her jaw when she tries to eat, so they are going to increase her morphine and add another medicine that will help long term with the pain.
She has a scrape on her elbow that looks like it might be infected. They cultured it and started another antibiotic as a precaution.
Her counts are up a little today, her platelets have come up some, too. She needed a blood transfusion this morning and it helped to perk her up a bit.
We will wait until the morning and see what her counts look like, then the doctors will decide if we can take her home. Please pray that we will stay on schedule to go to New York. We feel that she needs this trip to stay on track with her treatment.
We hope you all have a Merry Christmas!

12-22-08
Christmas is coming! We are decorating cookies and another (small) Christmas tree!
Morgan is doing well this morning. She is eating a little here and there, not because she isn't hungry, but because she is having pain in her jaw. It is caused by one of the chemo drugs. We are going to give her some pain meds and hopefully then she can eat more.
Her platelets have come up to 12,000 (most people have between 180,000-300,000) so she will recieve another platelet transfusion today.
Since nothing has come back from the blood cultures and she is only having low grade fevers, they may let us take her home on Wednesday.
We aren't worried about if we'll be home for Thursday. Both girls know we may be here for Christmas, and they also know that Santa knows where they are all the time- he does deliver, you know ;)
Hopefully we will have a day or two at home before Saturday. And hopefully Morgan's counts will be up in time for us to make the trip to NY!
Here are some pics from this morning......

12-21-08
Still in the hospital. We had a good night, Morgan's fever is down this morning. For some reason, they couldn't get a blood draw from her port, so they had to wake her up this morning and stick her arm for a blood draw. She is such a brave girl, she told the nurse to do it quick and have the band-aid ready. I hate how much she has to know at only five years old, but I'm so proud if her for always finding something to be happy about. There is more courage in this little girl than I could ever dream of having.
She is comfortable now, watching tv and ignoring my requests for her to eat breakfast. I just love her selective hearing :)
We haven't heard anything back from the cultures. Once the fever has been gone for 24-48 hours, if nothing comes back from the cultures they will probably send us home. There is no way to predict when that will be. Her ANC is still zero and her platelets have dropped again, so she is receiving another bag of platelets now.
Thank you for continuing to post in the guestbook. ALL of your support is greatly appreciated.

12-20-08 1:20 PM
After arriving at ACH this morning we waited 2 or 3 hours for a room, when we got to a room they took her Temp. BAD NEWS we have a fever. That's 2-3 day's detention so here we are at our home away from home. She is still going to get blood and platelets along with antibiodics as a precaution.

12-19-08
Morgan had a clinic visit today. Her ANC is so low that it didn't register on the machine and her platelets are very low. She is neutropenic which means no visitors and no public places. We are taking her to ACH tomorrow for platelets and a blood transfusion. Hopefully, we will be able to come home when that is done.
Our next clinic appointment will be Tuesday to recheck her counts.
She is feeling good tonight and she is eating well!
Ally is doing well, too, helping me keep track of all these Christmas cookies :)

12-18-08

Baking Cookies!
Morgan had another good day today! She is eating well and enjoying her toys. We also had fun making kiss cookies.
We go to clinic in the morning to check her counts....I'll post more when we get home :)

12-17-08
We had a great day today! We wrapped presents and played barbies. Morgan is eating very well! She gets a little worn out after play, so she is resting frequently. She is a happy little girl:)
We were in the Christmas spirit tonight with A & M all dressed up in their pajamas, as we took a drive to look at Christmas lights.
Thanks for checking in on us! Please know that we are thinking of you all with warm hearts during this holiday season.

12-16-08
Sorry it's taken me so long to update. We got home at 2am and we'vebeen unpacking all day. Not to mention I was last to get a turn on the computer ;) Morgan is doing well, she is eating (turkey lunchables are her new favorite) and she has been up at the table playing computer and playing barbies on the couch. We are truly happy to be home!
We met with Dr. Petrovich , she is one of the bone marrow transplant doctors at ACH. We plan to harvest Morgan's stem cells after her 3rd chemotreatment. Hopefully we wont need to use them, but we'll have them just in case. Neuroblatoma patients can receive their own stem cells in a "rescue" at the end of treatment if needed. This is more favorable than using donor cells.
We will continue to keep you posted, Thanks so much for continuing to pray for our Sparkly Flower.

12-15-08
We are almost done :)
Morgan's last treatment has started and should finish by eleven tonight. She is happy and moving around a little. She still isn't eating, but that is (somewhat) normal. Once she is home and baking Christmas cookies again, I think she'll get her appetite back. She isn't allowed to leave the room because of her previous infection. She doesn't have the infection now, but the doctors wont allow her to go around the hospital floor until she has three visits with negative cultures. Thank goodness we aren't here for longer than four days!
She and Ally have been keeping busy doing crafts and watching movies. They are keeping up with their schoolwork, too. We are looking forward to going home and enjoying some time together for Christmas.
After we are discharged tonight, we will see the doctors twice a week at clinic to check her counts. We have to give her an injection at home once a day to help bring her counts back up. The counts should go down and back up over the next two weeks.
Our appointments in NY are Dec. 28th and Dec 29th. We will leave the Saturday after Christmas and come back very early the following Wednesday morning. During the trip we will meet with Dr Modak and Dr LaQuaglia to go over her treatment protocol and she will have another bone marrow biopsy (#4). Please pray for her counts to recover in time for us to make this very important trip. Thank you all so much for helping us get Morgan up to NY. We are so thankful that we can put all of our focus on her while we are fighting this battle.
Thank you to everyone for continuing to post in the guestbook. We read the entries together as family everyday and we are uplifted by your kind thoughts and words of encouragement.
(and jokes :)

12-13-08
Sparkly Flower had a good day today. She is eating well and in good spirits. The Kitchel Family and Grandma came to visit tonight, and the girls played and danced and sang Christmas songs. Everyone had a good time. We are almost 24 hours in, with 48 to go. Thanks for your posts :)

12-12-08
We're here! Morgan had good counts across the board, so we are admitted and prepping for chemo. She is receiving fluids and eating strawberry ice cream! Her counts will stay up until after the chemo is finished. She can have visitors here at the hospital and visiting hours start at 9am. Please call before you come to make sure she isn't sleeping :)
Ally went to school today, she will come up a little later. Please keep up the posting, we all enjoy reading your thoughts and words of encouragement.

12-11-08
Our days at home have been fun! Morgan went to school for a short visit yesterday and today. She really enjoyed seeing her teachers and her friends. She has been eating and eating and eating, keeping me very busy in the kitchen! Her spirits are up and she is playing and happy!
Many thanks to everyone at Walden Lake Early Learning Center for holding a yard sale to raise funds for Morgan. We appreciate the time and effort you all put into supporting our Sparkly Flower :)
Thanks to all of those responsible for putting together the trust fund at Hilsboro Bank and the fund at Mercantile Bank.

12-9-08
Morgan says it's sixteen days 'til Christmas. She and Ally still haven't written any letters to Santa ! We are going to work on that tomorrow :)
We had a great day today. We went to the clinic, and Morgan's counts are way up. The doctors look at the ANC (absolute neutrophil count) to determine what she can do and if she can go out anywhere. The ANC is the calculation of the total number of white blood cells available to fight infections. When the ANC is above 500, she can go to the store or have friends over to visit. Morgan's ANC today was 6580. Her hemoglobin was good and her platelets are rising. Our next clinic appointment is Friday. If her counts are good then, we will go straight over to All Children's Hospital to start her second round of chemotherapy.
Morgan is in good spirits, and happy to have two "needle-free" days.
Ally is enjoying being at school and home this week and she will come with us to ACH this weekend.
Thanks for all your posts, we are so touched by the messages from old friends and new ones.

12-7-08
Busy, Busy! That what it's been like in the Pierce household today :) There was a Christmas tree on our carport when we got home yesterday, so we got busy decorating it and Ally & Morgan did a wonderful job! We also mixed up a batch of sugar cookies and the girls put together a gingerbread house. We kept Daddy busy putting up Christmas lights. The first set went up and didn't look just perfect, so we sent him back to the store not once, but twice! When he was finished we went out to see them all lit up, Morgan said, "This is EXACTLY the way I pictured it!" Finally, everyone was happy :)
Morgan enjoyed her visitors today! She is eating well and feeling good. We are enjoying our time at home!

Going Home!
We are home today :) Morgan is feeling good. We are watching movies and playing board games. We can have visitors, as long as you are healthy. Please call ahead, to make sure Morgan isn't sleeping :) I'll post more when we get settled. 12-6-08

12-5-08
Today was a good day for our Sparkly Flower. She has been eating a little at every meal. She has not had any fevers as of 11pm (Please continue to pray for no more fevers, we still have to get through tonight ;) They had to re-access her port because it quit working, which means they had to poke her with a new needle, but she was a trooper and it went very quickly. She was up and moving around tonight, and even colored a Christmas tree on the wall. We will post in the morning after we have talked to the doctor and know what we are doing. Thanks for keeping up with the notes, Morgan loves to read them. And also, thanks for praying for her.

12-5-08
Thursday was another up and down day. Morgan needed another blood transfusion and more platelets. The doctors say this is common with chemotherapy, in fact, they do these transfusions regularly at the clinic and send kids home the same day. We are still here because this pesky little fever keeps popping up. Just when we think we've hit the 24 hour mark, something in there decides we should stay here and her fever comes back. Morgan ate something at everymeal Thursday and even enjoyed a blueberry muffin for her before bedtime snack.
She is feeling a little better this morning, and the doctor came by to let us know her counts are way up. The neutrophils are still immature, so we need to stay at least another day to be sure everything develops properly. So in order to go home, she needs to be at least 24 hours with no fever and have counts that are jumping. We will keep you posted, please pray for no more fevers :)

12-3-08 UPDATE
Morgan started to feel better again tonight. She ate some pizza and watched Rudolph before going to sleep. I just wanted to share this picture with you. We are enjoying these times when she is happy and smiling :)

12-3-08
The last two days have been good and bad. Morgan had a good day yesterday, eating and talking and joking. By last night, though, she started to wind down and not feel so good. She has an on and off fever and is suffering from pain in her mouth and tummy caused by the chemotherapy drugs. Morgan slept for most of today and hasn't been eating. She is starting to feel better tonight. She and Ally and Daddy are playing bingo and checkers. They are having a lot of fun. Her counts are still really low but, the doctors say this is to be expected. Hopefully they will start to come back up soon, so she can visit with all of you. We read her the guestbook entries everyday, and she always smiles to hear about everyone that is thinking of her.
On a side note we have had so many people offer help and support during this very difficult time. Some of you have asked for a place to post information about fundraisers and events that are being held for Morgan. We have designated a forum for that purpose. Go to the events button on the left side of the home page to access this site. Please feel free to list event and contact information there, so those who want to participate can do so. Again, thank you all so much for your love and support.

12-1-08
This morning Morgan was given platelets and a blood transfusion. Her tests came back showing only symptoms of the infection. We already new she had one, so nothing new there. She is still neutropenic, but she is looking much better and FINALLY asking for chicken nuggets and french fries :) The doctor says we will be here until her white blood counts are drastically trending up. This could take anywhere from three days to ten or more. Her stomach pains are not as severe, so we are thankful for that. Her spirits are up a little and we are encouraging her to move around and play as much as she can. Hopefully, we will have a few days at home before her next round of chemo, which is supposed to start around December 14th.

11-30-08

We are still in the hospital. Morgan has an infection so they started her on more antibiotics. She is still having some pain, so they are going to do some more tests to make sure there's nothing else causing her pain. They are giving her some stronger pain medicine while we wait for the antibiotics to work. She still isn't eating much but she is drinking. Her counts are still low the doctor says it will take a few more days before they start to come back up. We will probably be here for a few more days. I'll have Cllint post some pics later, so check back when you have a chance.

11-29-08
We brought Morgan back to All Children's Hospital last night. She was having more stomach pain so we brought her in to rule out anything serious. They decided to admit her for dehydration and after we were admitted she began a mild fever. She is receiving IV fluids and antibiotics while we wait for her lab tests and cultures to come back. We should have most of those by tomorrow. She is neutropenic, which means her white blood cell count is low. This is normal after chemo, her counts should start coming back up in about a week. Until then, she shouldn't have any visitors because of the risk of infection. Don't worry about Ally, though, Morgan is used to her germs so she is allowed to hang out with her little sis :) We should know more after we talk to the doctor. We will keep you updated.......

11-28-08
Today was another tough day for Morgan. She is still not eating and she's still having some pain. She is drinking plenty of water and has been sleeping off an on all day. She really enjoys when I read her the notes from the guestbook, thanks for keeping her in your thoughts.

11-27-08
Thank you all for the comments. The last couple of days have been pretty rough Morgan is having quite a bit of stomach pain ,some vomiting and will not eat anything just nibbling sometimes. We started her injections today to bring up her white blood cell count hoping it will perk her up a little. By the way, thanks for dinner Shanna and Matt

11-25-08
Home Sweet Home
We are home. Everyone is glad to be sleeping in their own bed tonight. Morgan had a long day, not eating much and sleeping a lot. She didn't have much pain, though. I am glad to have her home and plan to take it easy with her and Ally for the next few days.
We hope you have a happy and blessed Thanksgiving.

11-24-08

Chemo is boring. And exhausting. We are all tired and ready for home. Morgan didn't eat much today, and she slept quite a lot. She is up tonight doing crafts with her sister and playing video games. We are glad to see her up and smiling.
Thanks for dinner, Billy and Emily, we enjoyed the company :)
And thanks for all the posts in the guestbook. We really are truly blessed to have so many people that care about our little sparkly flower :)

11-23-08
Morgan has had a great day today. She got a visit from two of her great uncles this morning. She has kept the room service staff busy trying to decide which foods she likes best (spaghetti-no sauce, chocolate milkshake and goldfish crackers). She watched Alvin and the Chickmunks for the fifth time, and of course lots of Disney. She also did some school work in between two short naps. The first round of chemo, we are discovering,is really quite ordinary. We are sitting here watching Morgan eat, sleep and play just like she does at home :) She is feeling good and comfortable.
Meanwhile, Ally is having some alone time with her grandma today.
We are allowed to have visitors (as long as you are healthy). Our room number is 268, just call and let us know if you're on your way :)

11-22-08
Morgan checked into All Children's Hospital this morning. She will start chemotherapy this evening and it should run for three to four days. Hopefully, we will be able to go home by Wednesday.
Morgan is feeling good. She is coloring, watching movies and eating all of her favorite foods, like chicken nuggets and hot chocolate with marshmallows.
*visiting hours are 9am-8pm

Morgan's Story
Around mid-October 2008, Morgan began having pain in her right hip. After a second trip to the pediatrician, we were sent to the hospital for testing. Two weeks, seven scans, eight IV's and two surgeries later, Morgan was diagnosed with stage 4 neuroblastoma. She is under the care of the doctors at All Children's Hospital and also Memorial Sloan Kettering Cancer Center in New York. She will undergo chemotherapy and surgery and possibly radiation.
Morgan has had little to no pain since the beginning of November. She is an otherwise healthy and happy little girl.

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