Friday, April 13, 2012

Friday, April 13, 2012 6:47 PM, EDT

Clear Scans!!!

We also spent time talking with Ally's Oncologist today. As many of you know we are now done with the 3f8 treatment at MSKCC. We (Mommy and Daddy) are/were very nervous to completely stop treatment, as Neuroblastoma is very aggressive and tends to come back, usually with a vengeance. After talking with the doctor it is clear that any treatment (chemo, MIGB therapy, different antibodies, etc.) would just cause side effects, and is not proven to prevent the cancer from coming back. Not only would further treatment have a whole host of side effects, it would make whatever treatment we were doing less effective, should the tumor return. So...our plan is to completely stop treatment. Ally will continue to be scanned (MIBG only) every 3 months. This will expose her to less radiation (as the CT scan is relatively high radiation) and save her the pain of bone marrows. We are all hopeful that the chemo, radiation, surgeries, and 3f8 did what they were supposed to do, and that Ally will remain NED.

We also spoke with the nutritionist at our NH Medical Center today. Ally has plateaued in her weight gain. She is stuck at 27.5 pounds (and today she was 38 inches tall). An average 3 year old girl weighs a little more than 27 pounds, and an average 5 year old girl should weigh around 40 pounds. A 3 and a half year old girl is around 38 inches, and a 5 year old girl should be closer to 43 inches. We are going to try a few changes to her diet to see if it will help with her 3-4 daily #2 bathroom trips (her food just goes right through her), and see if that helps her keep the weight on. It is also a possibility that she is just using all of her calories; because she is so active. Hopefully we will be able to get more weight on her, and hopefully, since her 2nd tooth came out tonight she will eat better as well!

That's all for now! (Except that we are looking into starting her immunizations up again, as she has none at this point and we are trusting in the Concord community to immunize their kids, so Ally won't get polio as well!) We will scan again in July. We all have vacation in a couple of weeks, and we are excited about the upcoming warm weather. Have a fantastic weekend. Hopefully I will not have to update for a while!!!

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