Friday, February 19, 2016

Day +136

This week we have been able to go back to doing dialysis four days a week, which is nice! His BUN/Creatinine are getting high, but his weight has been pretty stable since we cut back on some of his fluids. On Tuesday Raul had his scopes of his nose and his esophagus. His nose looked okay, and his esophagus just had some inflammation, but no strictures! He also had a product called Epifix placed on his knee with exposed bone to try to help that wound heal up. It will be replaced weekly in his room, they just did it in the OR this time because there was time and they didn't want to make him more anxious while awake.

Unfortunately, it was decided this week that Raul's HLH treatment was not working, and we will move to a second line treatment. They waited until his soluble IL2 level came back Wednesday before deciding for sure, although we all knew it would be worse since all his other labs and symptoms were. His soluble IL2 is up to 11,200; last week it was 4,600 and a month ago before beginning treatment it was 5,700. He is back to being more tired, more jaundiced, having occasional fevers, needing some blow by oxygen, etc. It is also possible he is having some neurological symptoms as he has been more irritable and for the past few days when eating his yogurt he doesn't usually remember to swallow until I remind him to.

So either today or Monday we will begin an antibody medication called Campath, we are just waiting to hear if it arrived in time to be given today. He will only have five days of this, but it could take a few weeks to know if it is helping or not. The most expected side effect is fevers. We are also looking into a trial drug back home at Dana Farber, but him being on dialysis will likely disqualify him from the trial. He will not be allowed out on passes while getting it as it will lower his counts even more and we don't know how he will react to it, so last night he got to go on a pass to the Ronald McDonald House for bingo. He wasn't feeling great, but he did like getting out, and especially liked riding the shuttle!

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