As noted earlier, last Tuesday was expected to be, and was, a very long day. We got home about quarter to seven that night, about an eleven hour stint.
We went back on Wednesday for more "Ara-C", which is a nasty one. We went back Thursday for more. And we went back Friday for more. Grind, grind, grind. In between trips, Alex has been in bed pretty much the whole time.
Wednesday and a good chunk of Thursday were pretty tough for Alex. He didn't really eat or drink for 24 or 36 hours. Miserable. This would have been due the cyclophosphamide and Ara-C combined. Fortunately, he wasn't throwing up and didn't get dehydrated. He felt sick and pretty beaten up, not a lot of fun. On Thursday afternoon he started to improve a little and ate and drank a bit. On Friday, we were in a bit earlier in the morning and glad to be finished fairly quickly. Alex drank very well that day and ate sparingly. His mood was a lot brighter though and he continued to improve over the weekend and was up and downstairs eating tacos last night and in good spirits.
Oh, you're feeling better? Let's whack you again! Our appointment today was at 10:00 a.m. but things were a little backed up and nothing really happened until 11:30. Then Alex had another lumbar puncture to receive methotrexate in the spine. The kids often like the sedative that goes with this and can be a bit giddy afterwards but today Alex was a bit more subdued than usual. One needs to lie flat for at least an hour after an LP and then he had another dose of the Ara-C. We got home about 2:30.
Alex's blood counts have been declining through this, his haemoglobin was down to 90 today and the white blood cells and platelets are also well below the low end of a "normal" range. This is to be expected but it makes you feel pretty crummy.
We go back tomorrow and Wednesday for shots of Ara-C (in theory these should be quick in-and-out visits but that happens maybe a third or half the time - that's not a complaint, my BCCH friends! It just is reality.)
On Thursday, Alex's blood will be tested again then he'll have a final shot of Ara-C (Hurray!) but we'll have to hang around and wait for the bloodwork to come back to see if he needs a blood transfusion. Chances are pretty good he will, in which case it will be another fairly long day. A grind.
Alex is in pretty good spirits tonight, all things considered. This week might be a little easier than last week as he didn't have the cyclophosphamide. Offsetting that is that he's a lot more beaten up than last week so we'll see how these next few days go.
In the meantime it's one day at a time.
Grinding it out.
