I want my whipped cream piled all the way up to the ceiling! Noah excitedly proclaimed. After he expressed an interest in waffles late Sunday evening, I dragged my exhausted self into the kitchen and started cooking. And as Ive come to expect, the waffle iron ate the first waffle. It took me about 10 minutes to pry that thing out of there. This is always our dog, Bears waffle. She doesnt care that its in a hundred pieces. Its a coveted people-food. The meal, consisting of homemade multigrain waffles, bacon, fruit, real maple syrup, whipped cream, and butter quickly gained popularity in this house, prompting requests to make it a Sunday night tradition. Ill probably do it because it was tasty, and created leftovers for easy, healthy breakfasts in the days that followed. But it will be devastating to my attempt to phase out gluten again. Steve, always wanting to make the kids happy, seemed to literally attempt to load Noahs 1/2 waffle to the ceiling with whipped cream. I stopped them before that could happen, but Id say it was at least face-high. Noahs appetite hasnt been good since he was put back on that chemo drug, but he enjoyed the whipped cream. Weve started venting his g-tube when his stomach feels bad (Thats the burping thing). We discussed possibly doing it before he went to bed that night, but then we started thinking about all of that whipped cream and we wondered if it would shoot out of his stomach in much the same way it explodes from the nozzle of the can. I bet Sunday night waffles would suddenly seem less appealing and the tradition would tragically end before it ever really began. Well, we received very disappointing news this week. Noahs donor cells took a nosedive and are at only 89%, putting him at high risk for leukemia relapse (except hes on chemo at the moment). They cancelled his appointment for today (Tues), and rescheduled him to go in tomorrow morning, to give them time to grab more of the donors stem cells from the freezer. They will check his blood in the morning and well see the nurse practitioner. The stem cells will not be ready until 2, so we will probably come back home instead of hanging out at the hospital because Noah would have to wear a mask the whole time. I really dont want to be there at all because that horrid respiratory virus has been confirmed at CHOP. Ugh. We havent spoken to a doctor yet about this steep drop, so we really dont know what would cause that. Hopefully well learn more tomorrow. The injection of stem cells should be pretty uneventful tomorrow. The risk develops in the weeks to come. They told us the risk of Graft versus Host Disease is greatly increased with a boost, as compared to the transplant itself. Im not sure why that is, but Id assume it has something to do with his counts being zero at the time of transplant, leaving nothing to fight with anything. GVHD is not always bad. If he gets a mild case, he becomes a leukemia-destroying machine, assuming there are any stray cells floating around, that werent detected by the MRD. But GVHD is very scary, and is one of the two things they originally told us is the most dangerous problem with transplant. The thing I find particularly discouraging right now is weve been trying to resume a normal-ish life. We were looking forward to holidays and all the things we missed out on since last year. I even started listening to music again. While I was cooking dinner the other night, I was playing music and singing as I used to always do in the kitchen. Steve sent me a text, saying it was good to hear me singing again.
Posted on: Wed, 17 Sep 2014 02:33:27 +0000
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