Day 550 - Big Update

Sorry for the long gap since we've posted...Everett has been busy living and loving life!

Still visiting the Pediatric Oncology/Hematology clinic at Sinai hospital on a weekly basis. Thankfully, labs have looked great and, if they continue to remain stable, Everett may have received his last dose of super expensive Ecluzimab on March 8th! This would be a huge milestone and we are very, very hopeful that the issue causing his red blood cells to burst does not return. Thank you for your extra support and prayers on this issue!

Unfortunately, Everett is still refusing to eat or drink anything by mouth. He also gags often and struggles to keep food down nearly every morning and late evening. We met with his new gastroenterologist during our clinic visit last Wednesday and she had some great suggestions to try before applying to an intensive feeding clinic. We are very, very hopeful that Everett will resume eating with outpatient support. Now that we've enjoyed our family being reunited for the past 7 months, the idea of Everett and Daddy needing to leave for another 2-month inpatient stay is very stressful.

We return to Duke for a follow-up during the first week of a May and are very hopeful to receive good news about his immune function. It will also be fabulous to show everyone how much our little guy has learned and changed since they saw him in October.

As usual, thank you for your continued prayers and support!





























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