Name: Camden
Age of Diagnosis: 5 weeks old
Date of Diagnosis: April 20th, 2020
Diagnosis: Primary HLH, due to “multiple mutations” in the UNC13D gene.
Location of Treatment: Diagnosed & Treated at St Vincent’s Children's Hospital in Green Bay, WI… & transferred to UW-Madison Children’s Hospital for conditioning, transplant, & recovery.
Child’s Interests: Playing with his big brother, Brayden (5yo) & mirroring every move he makes. LIGHTS. He has an absolute OBSESSION with ANY kind of light fixture, ceiling fan/light combo, nightlight, flashlight, etc. Eating virtually ANYTHING in sight. Talking to “Ma” (Grandma Nancy) on FaceTime. Going “buh-bye.” Playing with our pets. Cocomelon & Blue’s Clues.
In April 2020–Camden, like many infants diagnosed with HLH, started his journey with only a week’s worth of “undiagnosed fevering.” After being turned away with no diagnosis for 4-5 days in a row at our local rural hospital.. we had to do something differently.. Camden’s health was declining, rapidly... after a full week— we were finally sent to St Vincent’s Children’s Hospital..
Not even 14 hours later— Camden began experiencing febrile seizures & was sedated and intubated to protect his brain and body from further harm. Days passed with no answers.. negative test results.. and more and more dead ends. Around day 13, Camden would be diagnosed with pHLH.
He began chemo immediately at 6 weeks old and would continue until early August. We then transferred to Children's Hospital of Madison (WI) for transplant. We left our Michigan home on 8/7/2020–and wouldn’t arrive home again till 11/26/2020. Camden received his first life saving BMT on 8/18/2020 at 6 months old. Camden handled recovery with such grace.. he had no major complications due to BMT..
After a year of recovery and what seemed to be a happy, healthy, & thriving family..
Tragedy struck.
I’m November 2021 at 15months post transplant—Camden’s family would go on to find out his first BMT had FAILED at 15%— and he’d need another BMT immediately in the coming months.
Camden’s case is being discussed by hem/onc teams in both Madison & Cincinnati. He will head for his second BMT near the end of February or early March 2022. Please keep our family in your prayers in the months to come.
