Wednesday, May 26, 2010

Allyson has been fighting Neuroblastoma for over 2 years. We are currently in a holding pattern until her HAMA level drops. When it does we will continue with 3f8 treatment in NYC. We will draw blood on June 3rd to check her level. She will have scans in NYC in mid June to see what the disease is doing inside her body.

Tuesday, May 25, 2010 8:53 PM, EDT

Well, the medication continues to rear it ugly head. I complain, but really it is only a few times a day. It makes Ally super sensitive. Things that would not normally bother her send her into 10 minute crying fits. It is difficult to handle, because we know it is not her fault (and later, when calmed down, she seems to be confused about why she was so upset) but we also don't want to give into the behavior and have her think it is okay when she is not on the medication....oh what a fine line we walk, and I am sure EVERY parent out there has had to deal with a similar situation...but this is my blog and I can complain about it!

Not much going on lately. Today Ally fell in the driveway and scraped both her knees pretty badly. She refused to walk the rest of the night. It was sort of cute, when she stopped crying. It was also nice that she gets hurt like a normal kid. (Read that in a way that I like that my kid is normal, not that I like that she got hurt.)

We have an upcoming HAMA draw on June 3rd and scans in NYC on the 14th and 15th.
We follow the stories of a few other families that we have met in NYC. Almost all of them have had MAJOR setbacks over the past few months. In my head I know their situation is not our situation, but my heart is more fearful of these scans than any she has ever had before. It is going to feel like a long wait for those results.

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