Oliver is responding very well to the chemo! The treatment has suppressed the HLH enough that it is not destroying his cells nearly as fast as it once was. We are happy to report that Oliver's platelet level reached a new record today-81,000! With all of the positive changes we're seeing in Oliver's weekly HLH tests his doctors have decided he may not need all 21 weeks of etoposide (chemo) treatments. We are still getting chemo weekly for now, but this week we will hold the steroids. Sean and I are thrilled that we are able to hold the steroids because they make Oliver feel irritable and hungry-which makes him unhappy...so we get to skip that (for this week at least!)
Also, we are inching closer to transplant. I thought we were months away from transplant, but Oliver will get a liver biopsy sometime in the next week to determine if his liver can handle the pre-transplant chemo (which is different than the chemo he currently takes). If his body is ready the only other criteria he has to meet is age...he has to be at least 4 months old (May 28th). This means he could be getting his transplant in the next few weeks! We are excited and nervous at the same time!
Oliver continued his high flow wean yesterday and was close to being off respiratory support completely, but his belly got a little bigger yesterday, which took precious space away from his lungs-after a few hours he started showing sighs of fatigue...we increased the high flow again and PRESTO! Happy, relaxed baby ;)
When reading to Oliver this morning I noticed he has really started studying the pictures on the pages...he is so interested in the details now instead of just the contrast. He was looking at the pages intently for more than a minute...also, when he is upset and hard to sooth there are a few songs we sing to him that work like magic. I think we've got a creative boy on our hands ;) ;) ;)
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