Nicholas was diagnosed with pre-B ALL on April 2nd, 2013. Based on his white counts upon diagnosis, he is also categorized as ‘high-risk’, referring to risk of relapse. This happened so fast…
Nico had been acting completely normal in the weeks leading up to his diagnosis. On Thursday, March 28th he came home with a bruise under his hair that looked really bad – blue/purple raised bump. You would have assumed he hit the corner of a table or something. However, his sitter said nothing happened that made him cry that day. Seemed strange. Over the weekend, a couple more bruises appeared and we began to get concerned. Also, he LOVES playing football outside with Daddy and one night after going out, he came back inside and curled up with me. We watched it for a couple of days but by Monday night I knew it was time to call the doctor. Although 2 year old boys have bumps and bruises, this was different. I called on Tuesday and we went in that afternoon.
We only spent about 15 minutes with our doctor before she sent us to Children’s Hospital in Oakland. It was in those moments with her that the reality set in that this was not good. She didn’t say cancer, but in her compassionate yet serious way in my heart I knew that was what we were facing. For some reason I had dropped Julia with a friend instead of taking her to the doctors with me so luckily I was able to take Nicholas right in. I called Chris on the way and he met me there.
We were terrified as we had his blood drawn but in talking with the ER doc, Nicholas didn’t appear as pale and with a swollen spleen that most leukemia kids do so he said not to let our minds go there. He was thinking it might be ITP, a condition with low platelet count that isn’t life threatening. It only took about 30 minutes to get the results back and the doctor walked in with a nurse (or doctor? I can’t even remember) and sat down. He said “So it’s not going to be ITP”. I remember Chris looking at him and asking “well then what is it?”. “It’s the other one, he has leukemia”.
I’m not sure I can adequately put to words what we went through in the next hour(s). The doctor stayed in the room with us while we sobbed (wailed), and tried to process what he just said. I remember Chris asking at one point “are you sure?”. All this time we of course had Nicholas with us, who didn’t feel well and was tired and sick of being in this room. My head was throbbing beyond anything I’d ever felt, our chests felt like the world was collapsing it. It was awful. We had to wait hours for a bed to get ready on the oncology floor. I climbed on the ER bed with Nicholas and he fell asleep on me. They brought us up to the 5th floor in a wheelchair and we began our journey.
Over the next 24 hours we learned that Nicholas has pre-B ALL, which we were actually praying it was ALL and not AML. Compounding all our fears was that Chris’ brother, Dave, died from AML in 2004. Every person’s case is different and we kept being told to focus on Nicholas and that ALL was “better” than AML with regard to cure rates. We then had so many decisions to make regarding whether to put him on study, what type of central line, etc etc. With input from friends in the medical field, strength and love from our family & friends we navigated those first few days. He’ll be treated for 3.5 years and this type of cancer is CURABLE….we just need to get him through this.
Nicholas’ support page: http://nicoupdates.blogspot.com/