Name: CJ
Current Age: 14 months
Age of Diagnosis: 3 months
Date of Diagnosis: December 2020
Diagnosis: Primary HLH
Location of Treatment: Children’s Hospital of Philadelphia
CJ began showing symptoms in October 2020 (at 7 weeks old) when he developed a high fever. Tests showed no evidence of viral or bacterial infection, but doctors assumed it must have been a virus that needed to run its course. His first fever did break but came back two weeks later even higher and for a longer period of time. When all tests came back negative and he became very lethargic, we took him to Children’s Hospital of Philadelphia where they discovered his blood counts to be extremely low. About a month later, we received the official diagnosis of primary HLH and he began treatment which included dexamethasone (steroid) and etoposide (chemo) to calm the inflammation in his body caused by HLH, as well as begin the search for a bone marrow donor. We were fortunate that his body responded to the HLH treatment, and we were further blessed on Christmas Eve to learn that his sister was a 14 out of 14 match and would be his donor (the risks of transplant complications are significantly reduced with a sibling match donor). CJ received his transplant on Feb. 15, 2021, only 2 months after his diagnosis. He is now 9 months post-transplant with 98% chimerism. He was recently weaned off all medications and received his first round of immunizations. We are forever indebted to his medical team at CHOP who were able to provide an early diagnosis and move him quickly to transplant, which we believe has made all the difference.
