Mauros update (Day+303) - Well, its been a pretty full on couple of weeks for our Rocky. He is still in the Alfred Hosp, and not sure just yet when he will be released to come home. So many tests, poking and prodding has been going on as well as he has been presenting with his symptoms in an unusual manner. So the Docs/Care-teams have been checking for any other possible diseases/infections/viruses that could also be underlying. However, all other tests results returned negative, and Graft Versus Host Disease now officially confirmed. A low dosage of steroids had begun orally, as well as topical creams...one for his body, and a separate one for his face. We have seen some good improvement in his skin GVHD, with his body rashes improving, and thankfully the severe facial swelling and rashes reducing as well. His face still is quite red, but definitely looking much better!! Fluid has built up in Mauros lungs, so they tapped his right lung and 1.5 litres was drained. There has been some back and forth discussions about draining his left lung which they say is carrying approx 700ml (and right lung has now shown approx 600ml again since draining). However they have decided to leave lungs alone again for the moment (trying to spare Mauro the extra procedures, and they hoping steroids will help). A recent lung scan (performed at 2.30am mind you!!...Docs couldnt believe he was taken for a scan at that time lol!! It was meant to be done at a normal day time...but obviously a mix up in communication happened somewhere) has shown improvement now of the invasive Aspergillus in his right lung, so thats some good news! He will continue with daily IV transfusions of Amberzome for a few weeks yet, before they can drop the dosage to a few days per week. Mauros kidneys have been functioning well, however his liver counts had spiked very high. After a lot of discussions for and against doing a liver biopsy, it was eventually done this week. The liver biopsy has formally confirmed Graft Versus Host Disease as well. This one is of a major concern. Where the Docs were hoping to keep Mauro on a lower dosage of steroids to protect his Chimerism (percentage of donor cells vs his old cells) they have now had to tripple his dosage to a high amount, and also put him back on Cyclosporin (drug he used during transplant which further suppresses his immune system). We are not sure how long he will remain on these high doses of steroids, but its the only way to combat GVHD in liver. This again will unfortunately have a direct impact on his Chimerism. We are trying to not think about this particular concern right now...we will cross that bridge when we need too. Well with so much still going on for our Rocky right now, he is amazingly feeling OK, and looking better too. And although being on the high steroids gives him false energy....im sure he will continue punching along with much gusto! The girls and I are really missing him at home, but love our visits daily. We are just hoping we can get him home soon! And a big thanks to everyone that still sends private messages to me asking about his progress...i apologize if i dont reply or take so long to do so...its only because its still so hectic for me, and my days are long....but know Im always so grateful for them! Luv and thanks to you all!! 😄💖💖💖💖
Posted on: Sat, 05 Jul 2014 00:37:01 +0000
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