As a side effect from the transplant, in March (6 months post-transplant) Everett developed a very rare condition which caused his red blood cells to begin shredding. Thankfully, Dr. Prasad caught it quickly, and he began using the world’s most expensive medication (Ecluzimab) to combat the issue. At $36,000 per dose, this precious medication has worked very well to help the red blood cells but unfortunately suppresses Everett’s immune function and places him at increased risk of infection.
Weaning off the Ecluzimab can be very slow and challenging. The last time the team attempted to wean him, Everett’s body did not respond well. Throughout this process, the team has been closely monitoring everything, but especially his platelet counts, hemoglobin, LDH levels, and protein/creatinine in urine. Those values have looked stable over the past few weeks, so 2 weeks ago, the team decided to try weaning again. Everett skipped last week’s dose and we have been very nervous and hopeful that lab values would remain stable.
Thankfully, not only did things remain stable, but some of Everett’s labs (platelets, hemoglobin, protein/creatinine) actually improved!!! This is a huge milestone for our little 
champ and we are thrilled! Everett will continue to receive Ecluzimab every other week for the next few weeks as the team continues to monitor his progress. We are hopeful now that his immune function will also begin to improve.
Thank you so much for your continued prayers and support!
Port wasn’t cooperating at first, so they had to hook up an IV…of course, 15 minutes later his port began working again.
