Easton

Easton had recurring fevers starting end of May (4 mo.), then again end of June. Both fevers broke with in 3 days which led us to believe it was viral. We went to the pediatrician both times who had told us if it breaks with in 3 days and Easton is acting normal not to worry. After the June fever we were a little suspicious being it was summer which isn’t usually a season to get sick. We were under the impression we were taking him out too much. Come end of July, his 3rd consecutive fever we waited until day 3 to take him to his pediatrician. She said give it 2 more days, then come back if it hasn’t gone away. Fortunately, that was a Thursday so 2 days later would have been a Saturday when they were closed. Two days later we took him to Pittsburgh Children’s thinking they would again send us home. Luckily, a resident was doing a physical exam and noticed his enlarged spleen. All blood counts were low. They then admitted us. Days later sat us down and told us he had leukemia. Another blood test revealed it was not leukemia, but they didn’t know what it was. After a 4 day admission, his counts remained in the normal range and his fever had gone away Saturday night. So, they sent us home to monitor him & do weekly outpatient visits. Only 2 weeks later in August, he spiked another fever & we were admitted again due to low counts. They then eventually diagnosed him with HLH mid August (6 mo.). Genetic results confirm primary HLH due to two mutated copies of the UNC13D gene. We are awaiting a BMT which we will continue with transplant through Cincinnati Children’s. Easton LOVES to watch Cocomelon. His diagnosis has completely changed our lives. You never think it could be you until you’re in the situation. We continue to put our faith in God to carry us through this extremely trying time in our life