Wow, you guys. I am totally awestruck, blown away at the amount of support that is coming from this community for my little boy. I am seeing your names all over BG’s Facebook page, all over our Caring Bridge site–and in droves in my PayPal account. It is magical what is happening around our boy’s illness. People are coming together from every part of our lives to help him, and every time I open up my laptop, I sit here in tears at people’s generosity and love and compassion. I don’t know how to thank you. The words just aren’t enough to convey the gratitude I have.
As many of you know from other sources by now, BG has been officially diagnosed with a very rare form of leukemia that has been chalked up to nothing more than really bad genetic luck. We learned just a few days ago in a very scary sit-down meeting in a conference room with lots of doctors that he will need a bone marrow transplant if we are to beat this. The search for a donor will begin this week, and they expect it to take six to eight weeks, during which time he will be on chemotherapy. Chemo has already started. It’s mild, but it’s working to bring his white blood cell count down. Our nurses are amazing at helping find his comfort, so he has started some morphine a few times a day. We also happen to be at a university research hospital which houses the world’s leading expert on the type of leukemia our son has. We regularly meet with so many different teams of doctors. My favorite is our research guy who has personally broken down our son’s DNA. When I get to talk to him, I go into science geek mode a little more than freaked out mom mode, and it’s neat to think about. It’s profound the impact my son’s illness may have on future children with this disease. These cases come to this hospital once every 2-5 years. He literally had a one in a million chance of having this. One in a fucking million.
Some days are a little better, others are far worse. We’re having to learn who the new hospital BG is, who the leukemia patient BG is, and then who we are as moms of a child with cancer. It’s so fucking surreal, and I find myself drifting between going about my daily parenting duties and being utterly scared out of my mind at what is to come. Tomorrow, I face my first day at this alone as my wife goes to try and figure out how to sort of teach this fall. She has to or we lose BG’s insurance. We obviously can’t do that.
I’m just drifting here. Maybe I’ll find time to write something with more clarity tomorrow. I hope I will. I’ve got a lot I need to process here.
I never imagined this would become a cancer blog. Never in my wildest dreams. Yet I cannot imagine writing this anywhere else. Does that make sense?