Katie – Nolan’s Mom
Special to the Sun
The day before Halloween in 2017, my 9 week old son spiked a 102.5 fever. He was a preemie, born 7 weeks early. We lived in a small town and took him to the local Emergency Department hoping they would be able to help him. They looked at him and immediately determined that “this baby is sick.” We were told they are not equipped to care for him, and he needed to be taken to the emergency department in the nearest city an hour away. We left “against medical advice” because we knew we would be able to get him there quicker than waiting for a transfer. Once we arrived at the emergency department an hour away they drew labs, did vitals, and we waited for the doctor. The doctor came back and told us it was probably just a “virus,” give him Tylenol, and then follow up with our pediatrician the next day. The next morning, he was still battling a fever. We took him to our pediatrician, and she called the hospital furious that they did not admit us. She was frustrated they did not admit him based on the simple fact that he is a preemie. After talking to the hospital, they got a room ready for us and we were immediately admitted. We were there for 4 days. They performed a spinal tap and ran every test possible checking for viruses. Everything came back negative. They wanted to discharge us after a day or two even with an active fever. We pushed for him to stay until the fever was at least gone for 24 hours. The fever eventually went away and we were discharged. Less than 2 weeks later, he spiked another high fever. We took him to our pediatrician and she ordered labs “stat.” She called the next morning and said there were some things that concerned her about his labs. She was going to call the hospital we were at and see if they’ll admit him again. Thirty minutes later she called back frustrated and told us they don’t think it is anything more than a virus. She directed us to take him to the ED there so they can see how sick he looked. After a few hours in the ED, the doctor came in and looked him over. I was crying because I knew something was wrong. I knew it deep down. Back then I didn’t understand his labs, how to read them, or what they meant. If I did, then I’m sure I would have knocked this doctor out after she turned to me and said, “This is probably just the same virus he is fighting off. We like to save the hospital rooms for ‘really sick kids.’ Go home. Enjoy your Thanksgiving.” I trusted her. We went home. A few days later he spiked another high fever. Our pediatrician told us to forget that hospital we kept going to. She said, “They’re not going to do anything!” She sent us to a well-known children’s hospital 3 hours away with a print out of our son’s recent lab work and a handwritten note.
We walked into the ED, and within minutes the triage nurse was looking at his labs and assessing him. She immediately said, “There is something going on here. This baby is really sick!” We were taken straight back to a room in the ED and shortly after we were talking to the doctor. She said we would most likely be admitted to the oncology floor and she mentioned a few things about blood work and symptoms indicating cancer. I felt sick to my stomach and could not wrap my head around the possibility of my 3 month old son having cancer.
We were in the hospital for over a week. He received multiple blood and platelet transfusions. They tested for every virus. Everything came back negative. By that point, they knew it wasn’t a virus. There were two main things they were looking into, Leukemia and HLH, Hemophagocytic Lympho Histiocytosis. I had no idea what HLH was and, at first, I thought anything would be better than leukemia. But then I googled HLH, and the first thing I found was about a woman who lost both of her sons to HLH. I read about how the lack of awareness and treatment available for HLH often led to a misdiagnosis and a quick death. I was so scared. They did a bone marrow biopsy to look for leukemia or hemophagocytosis (which would indicate HLH.) Nothing showed up in his bone marrow. We thought we were in the clear.
We were discharged in early December with an unknown diagnosis. HLH was still on the back burner but not a “likely diagnosis” as we were told. They wanted to wait and see if he got better on his own. The fevers kept happening and he continued to need blood and platelet transfusions. By the beginning of January, after an ambulance ride to the children’s hospital, Nolan was given the official diagnosis of HLH and began treatment. His treatment consisted of steroids and chemotherapy. They sent lab work to Cincinnati to see if it was familial or secondary. We were told to look at Cincinnati’s website because they are the leaders on HLH, and that’s where we could find the most information.
After waiting a very long month, we found out he had familial HLH, and his only chance at life was a bone marrow transplant. It was important to get to transplant as soon as possible once his HLH was under control in order to avoid any flare ups. He would continue treatment until transplant. The week we were supposed to begin conditioning for transplant his HLH flared up and everything was delayed by 2 weeks.
Nolan is  days post-transplant now and 11 months old. He is doing great! All of his labs are trending in the right direction. We can finally say goodbye to HLH and enjoy Nolan experiencing all of the “normal” baby things. HLH is a monster. There are so many amazing organizations who are doing everything they can to raise awareness about HLH to hopefully avoid anyone going misdiagnosed and untreated. We are so thankful for these organizations because without it then our son might not have received the correct diagnosis and had a completely different outcome. If we would have continued returning to the same hospital that refused to look deeper into our son’s illness, then there could have been a much different outcome. We are beyond thankful for our pediatrician who knew the right hospital to send us to and followed her instinct that Nolan was battling much more than “just a virus.”
August 8, 2018, Update from Nolan The Champ’s HLH Journey Facebook Page
Yesterday we were released to go HOME today!! We are ecstatic. Nolan has been doing so amazing. We haven’t lived at home for close to 7 months! Nolan got his line removed on Friday last week and has been doing great. His donor cells went up to 89 percent. He did not gain weight, but we are looking forward to seeing him excel in our home environment.
Although we are going home, Nolan will still be on isolation for a few months. This means he is still not allowed to go to public places, be around kids, or anyone who is sick or been around anyone who is sick (including allergies). We have to be cautious in avoiding any sickness for Nolan because his immune system is still not quite ready and he is still on immunosuppressants. We are looking forward to finally being home and Nolan getting closer and closer to having a fully functioning normal immune system. We are excited and thankful.