During Alexander’s Treatment, I never really got “angry”. However, this week – I have been feeling a lot of anger. I don’t know where it is coming from – maybe from all the posts I have been seeing on Facebook about Childhood Cancer Awareness Month. It isn’t a mad angry, more of a sad angry.
I am angry that:
- Alexander Died.
- That all but one of the kids we knew or knew of with neuroblastoma have either died or had a relapse
- That researchers are working on new ways to target neuroblastoma, but that it is too late for my Alexander
- That there it takes MILLIONS of dollars to run for President – (I have seen $20,000 a plate dinners !), but really that money could go for so many BETTER things! If only we could have a $20,000 a plate dinner for pediatric cancer research!
- That I have made a ton of new friends this year – friends I should have NEVER met, but because of STUPID CANCER and because Alexander died, I have met them. (However, I will also add that I am VERY glad I had these friends during Alexander’s treatment and that I have new friends to support me on the journey on the “other side” of cancer)
- That even those kids that make it into Remission, may end up with many lifelong side effects. Hearing Loss, infertility, damage to organs and other body functions, risks of SECONDARY cancers!
- That Alexander died.
To help with all this, I do try to do things that are POSITIVE! I like to give back to the unit that Alexander spent most of his time on. I have done Easter Baskets and Christmas Stockings as well as some other things. It is fun buying them for the kids and imagining their reactions.
I would someday like to be a Parent Advocate in a hospital, to help those families going through what we went through. I want to be able to teach other parents to be a “Mean Mommy (or daddy)” and to stand up for their children when needed. Too often parents will look to a doctor as a god, and just listen because the “Doctor” said so. One time I had a resident trying to tell me that Alexander’s heart rate was “okay”, and it was low from the medication. I knew that he was wrong – it was normal for a kid is age, but not for my Alexander! Thankfully, the nurse knew Alexander well, and helped to get a more senior doctor involved.