Ray's BMT Journey: Year Three

Summer 2007 to Summer 2008

Summer

Ray went back to Dr. Perez and the BMT team at Moffit at the end of the summer. Once again, she felt that not enough had been done to treat Ray and suggested that he try other immunosuppresive therapies. Ray had given up going to Dr. Sokul by this time, because everytime we went to see him, it was as if it was the first time he had met Ray.

Fall

Logan's 3rd Birthday

After Ray was rejected by Moffit's BMT team for a second time, we asked for a 2nd opinion. We met with Dr. Cogle at Shands. He agreed that we should try a few more therapies, but that we shouldn't wait too long, or Ray's organs might start sustaining too much damage to do the BMT. Ray's Ferritin had increased to over 5000, so Dr. Audeh finally put him on a subcutaneous pump for desferal 24hrs/5days a week to help his iron overload.

At the end of October, Dr. Audeh put Ray on Rituxin. Thankfully, somebody donated 3 rounds of treatment at $5,000 each (our insurance refused to cover it). Unfortunately, Ray got a bad infection from the subcutaneous pump and had to discontinue the 24/5 desferal. Ray was kept on Exjade and received Desferal via IV after transfusions, but this did not seem to be helping.

Winter
In December, we finally got sibling match results from Ray's brother and sister. They were both a perfect 10/10 match. The BMT team said that they would explore the option of a transplant, but that he needed to get his diabetes and iron overload under control.

Christmas 2007

Spring

That Spring Ray met with Dr. Kulman to have a port placed in his chest so that he could receive 24/5 Desferal iron chelation. The surgery was schuled for the beginning of March, but had to be postponed due insurance issues (my company was bought out by another company and our Cobra was not set up in time for the surgery).

Barbados March 2008

The Port was finally placed at the end of March and Ray was placed on 24/5 Desferal. By that time, Ray's ferritin had increased to over 7000. Ray was scheduled to have a BMT at the end of May. However, during his BMT work up in April, Ray's liver enzymes were elevated with his ALT being 166. As a result, Moffit decided to perform a liver biopsy. on May 21st, we were informed that Ray was no longer a candidate for a BMT because he now had cirrhosis of the liver from all of the iron overload. Dr. Perez said that there was nothing more they could do and that he had about a year to live. She said that there was nothing that he could do to improve his liver and that he would never be a BMT candidate in the future no matter what he did.

Needless to say, we were devestated! However, I was not going to accept this diagnosis, and proceeded to BMT clinics all over the country. I also demanded that Ray be bumped up to 24/7 iron chelation. Within a month, Ray's ferritin went from over 8000 to 3000. Ray also went on a strict Diabetes diet and lost 20 lbs, while getting his blood sugar under control.

Disney Spring 2008

Summer

In June, Ray went to see a liver doctor name Dr. Mitchell. Dr. Mitchell said that he was very impressed with Ray's progress in just one month and felt that he should still be considered a candidate for a BMT. He recommended that we go back to the BMT team at Shands and the Ray continue to take steps to improve his liver function. By July, Ray had his ALT down to 48 from 166. We then went to see Dr. Cogle at Shands, who felt that with Ray's progress, he should be a candidate for a BMT within a couple months.