Hope had a good week at home with lots of World Cup (and Barney), Lunchables, fun with Celia and Quinn, and some cooking with me...
We returned Wednesday morning for round 3 of the epic battle: Hope vs. Methotrexate. When we left last week, the general consensus seemed to be that her mucositis earned her another dose reduction of 25%. But in the team's rehashing of events (particularly the continuous intake of Lunchables) they decided to stick with the same dosage as round 2. It's good and bad news.
Clearance and the waiting start tomorrow.
On the one hand, we want her to get enough to do the job. One doc told us yesterday that when they added this phase of high-dose mtx to the protocol a few years ago they saw EFS (event free survival) rates rise 10% - an amazing increase for childhood leukemia given how high these rates already were by that time. (Hope's dose is intermediate dose because of her Ds.) We want that payoff.
But, on the flip side, she will almost certainly get mucositis again. Hopefully its severity and the placement of the sores won't prevent her from eating and drinking. And, of course, our stay is likely to be extended by a few days. Last time it took a week, so that's a reasonable estimate.
This round started with another trip to the 4th floor OR for a lumbar puncture with chemo. Needless to say, Hope has many friends in pre-op, so she spent part of the wait doing some "work" at the nurses' station with her friend Serenti.
The 24-hour methotrexate infusion started at 10 pm. After a middle-of-the-night port fiasco (that required re-accessing her port because she pulled the needle out and dressing off while sleeping), it has been uneventful so far. Many laps around the unit, painting in the playroom, a lovely visit from Dorothy and Mags, and dinner with everybody.
Hugs for Hope from all of us.
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