Nolan's story as told by his Mom Katie, an incredible HLH advocate.
"It’s November 2017, we’re sitting in the ER for the 3rd time with our almost 3 month old premature baby! He’s been running a high fever off and on for the last month. They admitted us once and told us he’s fighting off a virus then sent us home. Now we’re back less than 2 weeks later. Nolan has a distended stomach, looks pale, and is running a high fever. I’m holding him, crying, because I can feel it! My momma instinct is telling me something is seriously wrong. The ER doctor walks in, looks at his labs, then asks me why I’m crying. I tell her, “I feel something is very wrong with Nolan. I can’t explain it. But I know he is really sick.” She gives me all of these “explanations” of why his lab work is so concerning. All leading back to, “it’s just a virus!” She tells me, “Go Home! Enjoy your Thanksgiving at home. We like to save the hospital rooms for kids who are actually sick!” We listen and leave, but things only get worse… Fast forward to December 2017, our pediatrician urgently sends us to a Children’s Hospital 3 hours away. Immediately upon arriving we are admitted to the Oncology/Hematology Floor. It is here that we receive some of the hardest news I have ever heard in my life, “Nolan has Primary Hemophagocytic Lymphohistiocytosis. His only chance for survival is a bone marrow transplant.”
The next several months were really hard as we prepared for and walked through the transplant process. Fortunately Nolan received his transplant on May 14th, 2018 from an unrelated cord blood that came all the way from Italy! Nolan is doing amazing now! He is a regular 4 year old who is extremely active, healthy, and social! I am incredibly grateful every single day for his life! It is such a scary diagnosis and process to go through. I love seeing all of the HLH communities and foundations coming together to raise awareness, funds, and support for other families walking through the same experiences that we have gone through! During our battle, it was the support of other HLH families that truly helped me through one of the hardest times of my life!"
