Aug. 27, 2015, 12:19 a.m.
Minimal Residual Disease, or MRD, refers to the (hopefully) very small number of cancer cells that remain both during treatment or after remission. Without too much detail, Aila is in the Induction phase of her treatment, which is the very first phase and 29 days in length. On Day 1 (8/12), she intravenously received a drug called vincristine as well as a dose of cytarabine in her spine. On Day 8 (8/19), she received a dose of intravenous pegasparagase and a dose of methotrexate in her spine. Today, Day 15 (8/26), she received vincristine again. Many of these drugs seem to work by interfering with functions central to cell replication, like DNA synthesis. We've been waiting with baited breath for the Day 8 MRD, as this number seems to hold some long-term prognostic utility. Aila's is 0.11, which means that after 8 days of treatment, her peripheral blood is now only made up of .11% leukaemic cells. I'm actually not sure how many there were initially, to be honest (will add this to our notebook of questions), but suffice it to say that it was a ton. Aila's 0.11 MRD at Day 8 as well as double trisomies on chromosomes 4 and 10 (considered favorable cancer genetics) makes her thus far considered "Average Risk." Not "Low Risk," where a lower MRD is needed. But "Average Risk." Day 29, when they draw bone marrow and measure her MRD in the marrow, is the number that seems to really matter, however. This is two weeks from today.
Brian and I are reasonably intelligent people. And, for a living, I conduct psychiatric research and talk in terms of statistics almost every day. But when it's my own daughter, it's very difficult to remember and realize that these population-based norms do not mean that Aila will or will not recover, will or will not survive, will or will not have an easy course of treatment.
I met the oncologist to whom we've been assigned for long-term care yesterday. I am admittedly a harsh critic, but I didn't like her. She came to our room with a 1st-year Fellow (whom we've met many times and like a great deal) and a Physician's Assistant. She argued in front of us with the Fellow and failed to introduce the PA. She said my daughter was beautiful, which she is, however she said in the same breath that because Aila was Caucasian, 2, and with favorable cancer genetics, we had nothing to worry about. She then made a point to tell me, in response to my question about why the MRD samples had been sent to Seattle for quantification, that of course it could have been done at Stanford as "flow cytometry" had been invented here but that the study required centralization of analyses. I'm not sure she realizes how little I care about Stanford's pre-eminence or her career as a renowned clinician. Brian and I care only about Aila.
I worked all day today, and Brian stayed with her. My Dad relieved him for a bit while he went for a run and a quick trip to Whole Foods. I stopped by the hospital after work, and Aila barely looked at me when I walked in the room. I don't know who this little girl is, but it's not really Aila. Is this the result of the leukemia? The steroid, dexamethasone, that she takes twice daily? The chemotherapy? The horror and trauma of nurses and doctors and child life specialists and physical therapists all coming in to our room whenever they please? Aila hasn't walked since August 7th. As her parents, I would say that we are as much concerned about this as we are about anything else. Is this a result of the leukemia? The chemotherapy? Pain?
My mother died on May 26h this year, and Trinidad, our cherished dog, was diagnosed with terminal cancer within weeks after her death. I asked, after those thing happened and somewhat short-sightedly, just what else could possibly be thrown our way. Brian and I are simply surviving right now, day to day, hour to hour, doing what we think makes sense and what keeps us from the darkest of places. Zander woke up screaming in the middle of the night last night, saying how much his legs hurt, eventually saying "I want Sissy."
I want Sissy too, Zan. I want her home, in our arms, safe and sound.
Fight, my baby girl.
Comments
vk 9 years, 2 months ago
Better be a damn good MD with that personality.
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