After a few stressful days, we finally have a plan. We thought the plan was set last Saturday, but it changed several times over the past week, and we are now back to where we started! Raul's lumbar puncture has been clear so far, which is good news. His preliminary bone marrow biopsy results came back this morning, and they did see some hemophagocytes. Not a lot, but they were there, so we will begin the Etoposide (chemo) today to treat the HLH. He will get it twice a week for two weeks, then once a week for at least six weeks. Many cases of HLH do not have positive bone marrow biopsies, but our team only wanted to begin treatment if Raul did, as some of the other criteria he met was not as definitive. The good news so far from the biopsy was that he did have all the types of cells that he should have. The sample was 80-90% cellular, which is more normal than his last at home that was 95% (hypercellular). This time around the fact that he is on chemo will not necessarily keep us in the room like before transplant, it will just depend on his counts.
This morning Raul's platelets were the highest they have been since transplant! He got platelets on Wednesday and Thursday because of surgery, but he has gotten them multiple days in a row many other times and never gotten this high! His Hemoglobin has also been a bit better this week, and his BUN/Creatinine continue to be improved. Unfortunately his weight has been getting very high now that his diarrhea and fevers are improved and he isn't losing as much fluid from those. He has only had one low grade fever (100.4) and one real fever (103.4) in the past week! His Bilirubin is now down to 3.5 as well, which is much better, and he is not looking very jaundiced anymore.
We had a great night last night! We went to the Ronald McDonald House for Bingo, and Raul got a few awesome prizes. He talked almost non-stop for the few hours we were out, and sat up the whole time as well! We think it was the most normal he has acted since transplant! It was so fun to get to hear him talk, joke, and play again. And not a single whine, even while we were eating dinner. He still talked for quite a while after we got back to the hospital, too.
This morning Raul's platelets were the highest they have been since transplant! He got platelets on Wednesday and Thursday because of surgery, but he has gotten them multiple days in a row many other times and never gotten this high! His Hemoglobin has also been a bit better this week, and his BUN/Creatinine continue to be improved. Unfortunately his weight has been getting very high now that his diarrhea and fevers are improved and he isn't losing as much fluid from those. He has only had one low grade fever (100.4) and one real fever (103.4) in the past week! His Bilirubin is now down to 3.5 as well, which is much better, and he is not looking very jaundiced anymore.
We had a great night last night! We went to the Ronald McDonald House for Bingo, and Raul got a few awesome prizes. He talked almost non-stop for the few hours we were out, and sat up the whole time as well! We think it was the most normal he has acted since transplant! It was so fun to get to hear him talk, joke, and play again. And not a single whine, even while we were eating dinner. He still talked for quite a while after we got back to the hospital, too.
Such a great picture! And wow, Raul, looks like you did great in Bingo! Those are some great toys!
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