Name: Noah
Age of Diagnosis: 5 yrs old
Date of Diagnosis: 12/24/11
Diagnosis: (Primary/Secondary) Primary
Location of Treatment: Cardinal Glennon Children’s Hospital then Cincinnati Children’s
Child’s Interests: Phineas and Ferb, Legos, Ninjago, Cars, airplanes
Noah was admitted into the hospital after an ER visit for extreme abdominal pain and fever and imaging showing an enlarged spleen. After about a week of testing, Noah was confirmed to
have HLH. Genetic testing confirmed that he had Primary HLH and would require a bone marrow transplant. After a couple months of outpatient treatment of steroids, chemo, and other medications, we moved to Cincinnati to prep for transplant in March of 2012. Noah contracted PCP Pneumonia and transplant was pushed of several times. He finally got his new cells in June 2012. His transplant was successful, and he was doing well. He was about ready for discharge but had to show that he could stand on his own again. Noah had suffered several compression fractures in his pelvis and low back due to extended steroid use and had quit being able to tolerate standing back in May. We were moved to the inpatient rehab floor in August to get stronger. Unfortunately, Noah started having breathing issues and became ill not long after. We were then moved to the PICU where Noah went from CPAP to BiPAP to being intubated. His lungs suffered extreme damage from aspergillus and unfortunately earned his
angel wings on October 12, 2012. Noah fought a long and hard battle, but his little body just couldn’t fight any longer. Noah had a contagious laugh that we all still hear and talk about today. He inspires all that knew him.
