Alina Margot Galletta

Alina was diagnosed with high-risk stage IV Neuroblastoma on 12/10/04, just two days before her 4th birthday. Shortly after, she started her first round of high dose chemo (COG A3973) at JDCH in Hollywood FL. We soon heard 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 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. She completed 6 cycles of Accutane on 12/10/05.

Alina is now classified as 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 24hr urine catecholamine tests until 01/08. She will continue with only physicals, blood and urine tests every 6 months.

So far late effects of her treatment include permanent moderate high-frequency hearing loss and adrenal insufficiency, however we are thankful to be together again at home and pray that there truly is no cancer left in her body. The relapse rate is very high and there is no real cure (yet) for relapsed Neuroblastoma.

If you are interested in helping Alina and other children with Neuroblastoma, or just want to learn more, please take a look at the links below. So far Alina has been very lucky (everything is relative). We’ve met many children and families that are suffering so much and others who have lost so much and we ask that you please pray with us that a cure is found today!

Journal

Thursday, July 3, 2008 2:08 PM CDT

When Alina was in treatment we met another little girl with a rare liver cancer. I really liked her Mom and we would often share stories and commiserate in the playroom while the girls played. The last time I saw them was in the summer of 2006. She had started treatment again and they were planning their make-a-wish to Hawaii. I’ve thought of her often, imagining her growing up, in school like Alina. I saw a picture of her yesterday and it occurred to me to look her up. I read that she had passed away the following spring. So even though it’s been over a year, to me it feels like it happened yesterday. I just wanted to honor and remember lovely Leila and all the other angels we’ve had the privilege of knowing.

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:

E-mail Author: mrdecar@comcast.net

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