Today marks 150 days in the hospital; just a few days shy of 5 months. Late last week through early this week Raul was acting almost like his normal self, but the past few days he has started to feel worse again. More tired, more pain, and just overall more crummy. We did make it to the Ronald McDonald House on passes the past two evenings, but he didn't want to stay too long.
This week he got to skip dialysis Thursday, and will skip Sunday too. We are hoping next week that he might be able to skip three days. He is eating a ton of yogurt again, so we may be able to cut back a little on his formula, which would be good, and would help his weight not get quite so high between dialysis runs.
Today Raul got his 7th dose of Etoposide (5th week's dose). Unfortunately, on Wednesday we got his soluble IL2 level back and it was elevated. Before treatment it was about 5,700, then last week it was down to 1,800 (I think), and this week back up to about 4,600. For now we are staying the course, and the labs will be checked again at the start of next week. It is possible that we will need to go to the next line of treatments if his HLH does not go back to responding to the current treatment. Raul had a couple fevers this week as well, which may have been HLH related.
This week in PT
he had fun trying out a few different "vehicles". He says his favorite
was the ride on tractor, though he was the quickest on the little
scooter since he could push himself with his arms. When he used the
scooter he got to race his PT and nurse! He didn't love the bike, but I
think if we could find a better way to hold his feet down he could do
it himself.
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