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Alina Margot Galletta

Alina was diagnosed with high-risk stage IV Neuroblastoma on 12/10/04, just two days before her 4th birthday. She started her first round of high dose chemo (COG A3973) at Joe DiMaggio's Children's Hospital. We were lucky to hear about Sloan-Kettering in NYC, that they specialized in Neuroblastoma and decided she would benefit from their experience and advances in research. They have one of the best pediatric surgeons in the world, Dr. LaQuaglia. They were replacing transplants with 3F8 antibodies and while there was no guarantee of better prognosis (national 5-year survival rate is about 30%) there would be less toxicity and less late effects. Alina and mom moved into the NYC Ronald McDonald House in Jan '05 and Alina started her 3rd round of chemo at Sloan (N9 protocol). Her primary tumor including both adrenal glands were removed on 2/28/05. This was followed by two more rounds of high dose chemo, then radiation to her abdomen (primary tumor bed), legs (still had slight uptake) and skull (lots of disease at diagnosis). In April she began 3F8 antibody treatments and in Oct. after 5-1/2 cycles she became HAMA positive (developed an antibody to the mouse antibody). She completed 6 cycles of Accutane on 12/10/05.

Alina has been in remission or NED (no evidence of disease) since she had her first clear MIBG scan on 8/20/05. She followed up every 3 months with CTs of head, chest, abdomen & pelvis, MIBG scans, bone marrow aspirates/biopsies (4 sites) and urine catecholamine tests until 01/08. She will continue with only physicals, blood and urine tests every 6 months. So far the only late effects of her treatment are permanent moderate high-frequency hearing loss and adrenal insufficiency. Neuroblastoma can recur at any time with survival rates dropping to about 5%. But as we get further from her diagnosis it becomes less likely and we are extremely grateful to be where we are now.

To learn more, please take a look at the links below.

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Journal

Thursday, July 2, 2009 8:48 PM CDT

Time for a more positive update.
Summer is going great. The kids are at the local camp again and are enjoying it even more than last year. We got to spend week in the Dominican Republic, and we all had a great time. We had a small milestone while we were there – Alina expressed an interest in eggs and liked them. This is sort of a big deal. Alina loved a big Sunday egg breakfast before she was diagnosed. While she was on chemo it was one of the few things we could get her to eat. We pounded the streets of NY to find places that served breakfast 24/7 (not really, we never had to go far.) Any way by the time she was done, of course she didn’t like them. We haven’t been able to get her to even try them again in the last 4 years, until now. I don’t know why it makes me happy, like another part of her has healed.
She started swimming lessons this week. She likes it though her teacher is pushing pretty hard, too hard for my taste. I’m torn as I watch her struggle, one side of me wants to say ‘hey take it easy one her she’s a cancer kid’ and the other knows she’s just like the other kids, and this will make her better and stronger. I may just have to switch teachers if she starts to hate going.

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Hospital Information:

Patient Room: Home in Dania Beach , FL

Joe DiMaggio's Children's Hospital
Hollywood, FL
Memorial Sloan Kettering Cancer Center
New York City, NY

Links:

http://www.bandofparents.org   Band of Parents
http://www.magicwater.org   MagicWater
http://www.mskcc.org/mskcc/html/2868.cfm   Memorial Sloan Kettering


 
 

E-mail Author: mrdecar@comcast.net

 
 

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