More good test results

Dayssi's MRD test result came back from St. Judes looking great: less than .1% of blasts in her marrow. This is equivalent to what you'd see in a normal healthy person. So we are now on the low risk arm of the treatment protocol. We had a long meeting with Dr. Dahl to discuss the results and whether we want to stay on the protocol, which entails random assignment of Dayssi to treatment condition. Before making the decision, Jim did a ton of research and I warned the doctor ahead of time so that he could prepare. Having had a few meetings with Jim already he knew what to expect. "I'd better study up!" he told me. Jim executed the classic Phills tete-a-tete and I would say that Dr. Dahl held up relatively well, barely breaking a sweat when Jim grilled him about the relative effectiveness of different doses of PEG aspariginase, and maintaining both his swagger and sense of humor for the duration. In the end, we opted to stay on the protocol, and were assigned to the standard treatment arm (Dayssi will not receive anything experimental). We are as comfortable as we can be with this outcome, knowing that the standard treatment is the best known treatment at present and knowing that we will not have to contend with additional uncertainty about side effects and outcomes.

Yesterday the fabulous nurses in the oncology clinic accessed Dayssi's new port with incredible ease -- she did not even seem to know that she was being poked in the chest. This morning we had a rougher go of it: the nurse preparing her for her spinal procedure was less experienced apparently and failed to hide the needle, and then missed the opening so that it had to be done again (luckily, next time under sedation while her other procedures were being completed). They used gas to put Dayssi to sleep this time and it seemed to go very smoothly. However, the doctors also forgot to remove the line from her port during the procedure, and it was taped down pretty tight, so Dayssi had to endure having it all removed while she was awake in the recovery room. She put up a pretty good fight but once it was over she dried her eyes and asked for chicken nuggets. And that was the end of that. There are good things about going through this kind of stuff when you are only 2.

Tonight we are back on chemo and we have to try some new pills (Mercaptopurine or 6MP). Jeepers creepers. They can't be given with milk products (no yogurt) and they have to be given on an empty stomach. We have the option of crushing them (but they are a biohazard, we have to wear gloves, and apparently they taste nasty) and mixing with a syrup of some kind OR trying to get her to swallow the pill (but she has to take 3 pieces of pill). We are going to try putting a piece in a jello jiggler tonight to see if she can suck it down without feeling it. She thinks it SOUNDS like fun, so that is a start. We'll let you know how it goes.