[Lisa S.]

When my son was 9 years old-bloody noses, petechia, weakness and then June 2013 admission for red blood cells, platelets, followed by eventual diagnosis a month later of SAA. Sept 2013 his 6 year old brother donated Bone Marrow to him, and it worked well, great response, but 3 months after the cyclosporine stopped it came back -18 months after BMT #1. So we tried again, BMT #2 in March 2015. And it was rough, 59 days in Boston Tufts Hospital, and to shorten this post, he is home on cyclosporine-he is now 10 months from BMT #2, and the cyclo is rough on his kidneys, so he takes 500mls of Normal Saline through his broviac at night. He used to take 1000mls of NS, but the doc decided to try Sirolimus and taper the Cyclosporine. But now after 4 weeks of slowly going down counts, I saw the Lymphocytes rising and his ANC went under 1000. This game changer has him back on a higher dose of Cyclosporine and tomorrow we are headed to clinic to get him a GCSF shot to stimulate his Marrow to release some neutrophils. Doctor wants him to stay on Cyclo and the Sirolimus dose for 3 months and then taper one of them off. I don't know about this sirolimus, it was great for his kidneys, but what good is that if it can't keep his lymphocyctes from attacking?? Feeling helpless....Any Advice!!