Jun 21, 2017 Latest post:
Aug 22, 2018
March at Lehigh started for Darby as Strep, Flu and Freshman year over extension, then accelerated into the calamity called Epstein-Barr Virus. While we all have EBV in our systems to some degree, Darby’s immune system became hyper-active trying to defeat the virus and created a rare condition called Hemophagocytic Lymphohistiocytosis (HLH), causing much more damage than resolution.
The first phase of eight-week treatment for Darby started at Children’s Hospital of Philadelphia. Called the Cincinnati Protocol, this well-trod path used a combination of steroids and chemotherapy intended to suppress the virus to allow his immune system to recover, then fight the virus. While this approach seemed to keep the virus at bay for Darby’s body to recover, once the Docs began to wean Darby off the Protocol’s cocktail, the EBV came roaring back - twice.
After a confident move back home, the next phase of treatment started at Children’s Healthcare of Atlanta in early June with specialists in EBV-HLH sporting Fellowships from Cincinnati Children’s EVB-HLH program. Much of the research on EBV-HLH began at Cincinnati Children’s. The Docs now intend to replace Darby’s immune system via a Stem Cell Transplant with cells from another immune system better able to fight EBV. As for transplant donors, brother William appears to be an ideal Bone Marrow match, complete with cells containing anti-EBV capabilities.
The transplant is scheduled for mid-July where Darby will be isolated in the hospital for four to six weeks beginning late June. The stay will include two weeks of prep then another 4 weeks to allow the new immune system to take hold. After, he will continue to rebuild his new immune system as an out-patient over the remainder of the year. At this point he boasts good health and upbeat spirits, keeps up with texts/snapchats, exercises daily and plans to weather the storm like the champion he has always been. We are thankful that solid conditions for success appear to be in place.
Thank you for thinking about him and we appreciate your positive thoughts, thoughtful prayers, boredom beating creativity and, of course, texts and snapchats to him about what is going on outside of CHOA.
Bill, Babette, William and Darby
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