Riding for Roses

The test results from Friday’s procedures are back and very positive. We got the news that Spencer is a rapid responder, less than 1% of the cells in the bone marrow aspiration were leukemia cells. This means he is officially in remission; the standard treatment is still three years and two months of chemotherapy, but the prognosis is good. Tempering this good news is the story of an eight year old we met in the day surgery waiting room. He was diagnosed with pre-B-cell ALL five years ago and was in remission after one week. He’s back with a relapse of the same cancer and doing chemotherapy and radiation.

The other plus of rapid response is Spencer has no procedure this week and probably none next week. If CBC is good (get that ANC up and enough red blood cells and platelets would be nice), Spencer may be able to go back to school next week.

The steroids (dexamethasone) have definitely kicked in. Spencer is getting a bit moody and is constantly hungry with less predictable preferences than before. He actually asked for and then did not eat French Fries with his dinner. I can’t remember him ever deciding not to eat fries before. He has anthropomorphized his nausea and appetite as “tummy boy”. Tummy Boy is often very hungry and sometimes wants to throw up, especially after taking pills. Despite that, it’s been days since he actually did throw up taking pills and he’s swishing and spitting (swallowing a tiny bit) the Nystatin once a day. We’re supposed to do it twice a day, but I’ll take what I can get. It’s to prevent yeast infection. Anything prophylactic comes below the chemotherapy drugs on my priority list.

Spencer is sleeping with Rachel every night now and I’m sleeping in his bed, which is nice and firm since he rarely sleeps in it as he prefers his Scooby Doo tent. Spencer wants to do that for the three weeks that are really scary. He tells me that Rachel and I are his heroes since we help him not be scared.