GVHD is a 4-letter word

Day +22 post-transplant and the road home is still a ways away. Unfortunately, Ed is experiencing more side effects with this transplant than with the first one. The week after transplant brought nausea and loss of appetite associated with the chemo and radiation Ed received prior to transplant. Week two after transplant brought low-grade fever that was most likely associated with not having an immune system. Once his counts returned, his fever subsided and we had a plan and a target date to come home. Then the nausea and gastro-intestinal issues kicked in, along with a fever that soared as high as 103 degrees uncontrolled with tylenol for several days. It was clear that week three was going to be a challenge - and it has been. Tests revealed that Ed has Stage IV Acute Graft Versus Host Disease of the Gut (specifically the Duodenum and Colon). It's very serious and being treated agressively and appropriately with steroids and other immunosuppressive agents. So far, his fevers have subsided, but he's still experiencing nausea and diarrhea fairly constantly. In addition to medication, his doctors have had him stop eating - the hope is to let his gut chill out a bit. As a result, Ed has lost quite a bit of weight, is very weak and feeling really crappy.

So, some not so great news this week dear friends and family. Ed and I are very realistic about the seriousness of this, but are choosing to see this as potentially positive. We were always so grateful that his first transplant brought very few issues and allowed us to return to normal so quickly. But since his ultimate outcome was to relapse, perhaps things would have been different if he'd had some Acute GVH 7 years ago. Our hope is that his suffering now will pay dividends later and allow him to achieve the goal of long-term survival. We can only continue to hope and pray that he will begin to respond to treatment and come through this. His doctor's assure us that recovery from this will be a slow process, but so far have not given indications that a positive outcome is not achievable.

Despite everything he is going through today was still a good day; Ed had a nice video chat with the kids this morning; I was able to "spring" him from his room for about an hour and took him outside into this beautiful day (the hospital has a really nice courtyard out back - you'd never know that the war-torn views of Detroit were just on the other side of the building!); and we (well mostly me) watched the Spartans soundly trounce the Wolverines! Go Green!

Once again, many thanks for your continued thoughts and prayers. We need everyone's support more than ever. This is a marathon and not a race! Thanks again to all the OLGC families for cooking; to our moms for helping with the kids; to our dads for helping with the "honey-do" list; and to my close friends for talking to and keeping me sane on my drives home from the hospital each night - we could not get through this without you all!

With love and highest hopes - The Thorps