Well it's been a few months since I've updated caring bridge. It's been a whirl wind. I will do my best to keep up on the updates on Maylin from here on out.
In May we had a follow up trial scan. She walked- assisted into the hospital and into her scan and when she woke up her left sided weakness was back and she could no longer walk or use her left arm. And with that scan we saw some tumor progression. So we made the decision to do re-radiation to help shrink it again. Maylin, mom, grampy and Kona spent 5 weeks in Salt Lake for treatment. We hadn't started to see any positive side effects until this last week. We were worried that it didn't work. But she's wanting to play more, moving her arm a small amount and starting to walk assisted and with a brace more and more each day.
She is still on the trial study. When we re radiated she was moved to a new arm of the study so she took the meds while I'm doing radiation and will start them again next week. We leave Thursday for salt lake for follow up scans and other tests for the study. We just hope, pray and keeping our fingers crossed that there is shrinkage.
Last night maylin had her Make a Wish wish for a back yard oasis. Although it wasn't her first wish, Hawaii, we had a fantastic night and she loves her new backyard toys!!
If I can ask one thing of you, please pray for our girl that her tumor is significantly smaller and she continues to heal more each day.
DIPG is an awful, terrible disease that NO child deserves.
