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In this post, a guest blogger and mother to Nolan, shares her family’s story of their journey with Hemophagocytic lymphohistiocytosis (HLH). We cannot thank the family enough for the courage and desire to allow us to spend some time getting to know them, and our wish is that this can offer hope to others who are walking alongside this journey.

It was the night before Thanksgiving…

It was the night before Thanksgiving. Nolan spiked another high fever. He was barely 3 months old at this point in our journey. So we were once again at the ER. Nolan was lethargic and pale. His stomach was so distended that his belly button popped out. The nurses just spent the last hour trying to get an IV in his little veins. It wasn’t successful. Fortunately he had lab results from the previous night that his pediatrician ordered. Everyone was out of the room at this point except for me, Nolan, and my parents.

My parents were there because my husband was working a night shift. I began to cry. I’ve never felt so much pain in my chest and stomach before. I looked over Nolan’s labs and I knew something wasn’t good about them. I had no idea how to interpret them (later on in Nolan’s battle I was an expert with labs), but I knew they weren’t good.

Eventually we were discharged from this ER visit with the diagnosis that this was “just a virus” and to go home and enjoy our Thanksgiving. We went home. We tried to enjoy our Thanksgiving, but it was hard. There was a dark cloud. A dark presence. I could see it especially when I looked into Nolan’s eyes. My baby boy was fighting something dark, ugly, mean, and powerful. I needed to get him the help he needed! I needed to be his advocate!

Nolan’s fevers continued to come and go.

Eventually we were admitted to an oncology/hematology floor at a Children’s hospital about 3 hours away from our home. They continued to run more tests to try and find out what was causing Nolan’s health to continually decline. After a little over 2 months from Nolan’s first fever, he was finally officially diagnosed with Primary Hemophagocytic Lymphohistiocytosis. It was so much to process, especially as new parents. We were told he would need a bone marrow transplant in order to live! We were devastated!

At this point I felt very helpless! I did not know anything about bone marrow transplants or where we were to begin! We were connected with Be The Match, the national bone marrow registry for the United States. They were so helpful in helping us navigate through this very difficult time.

Navigating BMT

My family hosted two bone marrow drives while we were in the hospital to encourage others to join the registry. Be The Match shared our story in the hopes to find Nolan, and others waiting on the registry, a bone marrow match! Be The Match became a great contact and resource for us in learning about the bone marrow transplant process. They were so helpful in answering any questions we had regarding the process. On their website they have a section that explains the transplant basics as well as a lot of resources for before and after transplant for the patient as well as a caregiver!

Connecting with Be The Match and educating myself about the process was one of the ways I felt like I was helping Nolan! I will always be grateful for Be The Match and the support they provided in such a difficult time!

Nolan’s first year of life was a traumatic year for me! I felt like for a whole year I could not take a breath and everything inside of me hurt! We were brand new parents and fighting with everything inside of us to help Nolan live! Once we were home and we were given the amazing news that Nolan’s transplant was a success, I began to process everything we went through. I realized I needed to find an outlet to help me process the trauma.

An outlet for the pain…

This is when I began training for American Ninja Warrior! I had a dream during Nolan’s transplant that I would someday compete on American Ninja Warrior and share Nolan’s story. I wanted to use all of the pain we went through to raise awareness for HLH and Be The Match to help others. I never realized how much healing I would experience through my training as well. Less than 2 years after Nolan’s transplant I was standing on the platform of American Ninja Warrior getting ready to share our story.

I was filled with so much emotion and gratitude! Nolan’s story was shared on National Television. NBC even mentioned HLH! I was also given the opportunity to do numerous interviews with news stations like KTLA and NBC LA where Be The Match & HLH were talked about multiple times! It still feels like a dream to me!

Sharing our story as well as physically training for American Ninja Warrior helped me heal in so many different ways! I am so grateful for Nolan’s life and really strive to use the things I am passionate about to raise awareness and give others hope!

Learn more about the signs and symptoms of HLH here, and find out more about how to help raise awareness and funds for histiocytic disorders, here.