The day before Halloween in 2017 my 9 week old son spiked a 102.5 fever. He was a premie, born 7 weeks early. It was concerning he had a fever, not only because he was so young and we were good about keeping him isolated and away from viruses, but also because he did not have any other symptoms that would indicate he had caught a virus.
After about a month of frustrating hospital visits, fighting with doctors to get him admitted, declining labs, multiple blood and platelet transfusions, and a PICC line placement, our son received the diagnosis of primary Hemophagocytic Lymphohistiocytosis commonly known as HLH.
I remember the day the doctors first mentioned HLH. It was before they did a bone marrow biopsy. The doctor was talking with us and said they are looking at two possible diagnoses, leukemia or HLH. I had never heard of HLH before, but in that moment I remember thinking, “anything is better than Leukemia so hopefully it’s HLH.” Once the doctor left the room I googled HLH and the first thing I found was about a family who lost both of their sons to HLH. I read about how the lack of awareness often led to a misdiagnosis and a quick death. I read that if it was primary HLH he would need a bone marrow transplant. I was so scared. This was all very overwhelming.
As we were waiting for Nolan’s official diagnosis and genetic results to return I found an HLH support group on Facebook. This group connected me with so many people and organizations who were out there to help us in any way possible. It was so amazing to connect with people who understood what we were going through. It was a light in such a dark time.
Through this group I heard about Liam’s Lighthouse Foundation and Dynamite the Histio Warrior Dragon. We received Nolan’s histio warrior in the mail about a month before his transplant! We chose Dynamite to be blue to represent HLH, but blue has actually become Nolan’s favorite color!
We do our best to share Nolan’s story to help encourage others and fight alongside them just as we had so many people in our corner during Nolan’s HLH battle.
Join us in raising awareness this September during Histiocytosis Awareness Month by sharing the stories of your Histio Hero. Complete the form here.
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