Dezi Mae Howard
Age: 7
Date of Diagnosis: August 17, 2023
Diagnosis: Secondary HLH
Location of Treatment: Texas Children’s Hospital in Houston, TX
Warrior Interests: Competition Cheer, Dance and Anything Scary/Creepy
Short description of individual's journey:
Dezi Mae Howard was a healthy very active 7 year old. She started running high fevers out of nowhere for weeks. She was admitted to Texas Children’s Hospital on August 1, 2023 and has now been there for 63 days. After numerous tests, bone marrow aspiration/biopsy and lumbar puncture the Dr.’s determined she has Secondary Hemophagocytic lymphohistiocytosis (HLH) a very serious condition. Her HLH was brought on by Epstein Barr Virus (EBV). She is currently undergoing treatment weekly at Texas Children’s Hospital in the Cancer and Hematology Center in Houston. With a diagnosis of HLH, Dezi Mae requires frequent clinic visits, blood draws, procedures, chemotherapy and possible admissions. Dezi Mae’s treatment plan causes her to be in an immunocompromised state. She currently receives Dexamethasone, Chemo, Gamifant and Rituximab. She also frequently needs blood, cryo and platelet transfusions. She also receives IVIG therapy as needed. She has not been able to be successfully weaned off of her steroids yet. The Dr.’s are doing genetic testing as well on her, her mom and her dad and they are watching her to make sure she doesn’t have Chronic EBV. Her treatment duration will depend on her continue response to therapy and any complications that may present as the result of treatment. If nothing improves with her EBV numbers and Ferritin levels the next step in her treatment would be a Bone Marrow Transplant in which her sibling and parents would be tested first to see if they are a match and if not Dr.’s will search for Dezi Mae a match in the national registry. The Howard family appreciates everyone’s compassion and support during this incredibly challenging time.
