Tuesday, September 15, 2015

Facebook update [pic] from Help Anton

Day +172 I think it's important to set a few things straight. I know it is hard to keep up with everything that is going on because it's a lot but there are some things I want you all to know. Anton flew through his transplant. He was 100% engrafted with his donors cells 21 days after transplant. He hasn't gotten a blister AT ALL in the past 2 months. His skin went from being SUPER fraigle, almost see through, and shinny, to looking and feeling like healthy skin. He has only gotten a few small wounds in the last several months but nothing even close to what he got before transplant. We only have to wrap open wounds and can leave the rest of his skin unwrapped. If we had the choice we would chose transplant all over again. It has literally changed Anton's life for the better. I don't think I will ever be able to say enough good things about the work Dr. Tolar is doing. My hope is that no one would ever look at Anton's fb page and be scared of transplant because of what he is going through. Every child who goes through transplant has a different experience and Anton is just having more complications than most. BMT has been amazing for our sweet boys skin, the work Dr. Tolar is doing here is mind blowing. We knew going into transplant that we would most likely be here for six months to a year because Anton's health wasn't all that great before transplant. Anton would run a fever of over 101 at least once a week for no reason (pre-transplant). After transplant any tempture of 100.5 is an automatic readmission to the BMT floor. Anton was admitted to the hospital several times a year back home for fevers and infection so we knew that would be multiplied here. I know I have posted it before but I want to post it again. Anton has spiked a fever at least once a day for the past 60 days. He started getting fevers two weeks after they put him on tacro (an immune suppressant med). Come to find out tacro can cause fevers in up to 59% of people who take it. So there is a very good chance that his tacro is to blame for the fevers. Because it is an immune suppressant he has to be weaned off slowly. The wean will take 10 weeks so if that is the cause of the fevers we will most likely be here until it is totally out of his system (so for several more weeks). Our team hasn't stopped there though. They check blood cultures everyday, are always looking for/ testing for viruses. They aren't going to just wait it out but are very proactive in making sure nothing else is going on. These fevers are driving them crazy and they have all said they won't stop until they get to the bottom of it. I 100% trust our BMT team and wouldn't want anyone else caring for him right now. I know a lot of you are worried about him and even scared but please know that other than the fevers nothing else is going on at the moment. No viruses, no blood infections, all of his body systems are functioning properly, nothing is shutting down. Other than fevers, bring tired, and being grumpy he is doing good. I will keep posting updates and I am not planning on holding back any information so you can rest assured that if something more was going on you guys would all know. via Help Anton http://ift.tt/1icUfME September 15, 2015 at 01:10AM

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