That is a forced smile for Mom because Justin hates wearing his leg stretching braces. But I am grateful to have them as his lower legs and feet are again showing signs of neuropathy, heel cord tightness and weakness. Justin will resume physical therapy starting next week.
I was awarded a scholarship by the American Alliance for Childhood Cancer, which basically means they pay for me to spend a few days in D.C. later this month. I will attend training classes on how to effectively share our story, as well as how to specifically advocate for a bill called the STAR Act (Survivorship, Treatment, Advocacy, Research) to be sponsored and passed. This would ensure that more research dollars are allocated, by the National Cancer Institute, toward better chemotherapy drugs and more treatment options for pediatric cancer patients. (Currently 96% of the total budget goes to adult cancers and only 4% to childhood cancer research.) Myself and other advocates, from around the country, will then go to Capitol Hill, where meetings with congressman have been arranged.
Okay, that was all very boring to read I’m sure. But it’s pretty important to me to be able to DO something, and to share this opportunity God has given me. It all feels a little daunting, but I do like a good challenge. More on this to come.
Thank you for continued support and prayer. God is faithful.
Remember your word to your servant,
in which you have made me hope.
This is my comfort in my affliction,
that your promise gives me life. Psalm 119:49-50