Asher was 14 months old when he was diagnosed in June 2020. He had a successful surgery (gross total resection) and started the ACNS0333 protocol in July. He had a hard time during the induction rounds, with several complications, but recovered well. He did very well during the first two consolidation rounds.
During his fifth and last cycle of chemo, he developed breathing issues which did not resolve. He ended up in ICU on high-flow oxygen after being put under anaesthetic for a CT and MRI, but was not improving despite being on several antimicrobials for suspected pneumonia. He developed severe pulmonary hypertension resulting from the lung issues. The ICU team planned to transfer him to a hospital with a pediatric ICU, but after intubating him for the trip, he deteriorated.
He passed away in November 2020, the day he turned 20 months. The cause of death is suspected to be lung complications from the chemo (likely Thiotepa), however the family are still waiting on the final results of the post mortem to know what happened in his lungs. Asher had no evidence of cancer at the time of his death.
Asher's family are absolutely devastated and heartbroken. Asher is deeply loved and will be forever missed.