Hux was born on February 18, 2018. He was diagnosed with Phelan-McDermid syndrome, a syndrome similar to autism, at one week old. At three years old, Hux started regressing and having balance problems. An MRI of his brain was performed because his syndrome puts him at risk for cysts. On April 26, 2021, an MRI revealed a mass on his right frontal lobe. Because it was so small, the neurosurgeon ordered another MRI on June 16, 2021. The second MRI showed that the mass had grown. Brain surgery was scheduled for June 30, 2021, and the tumor was completely removed. On July 2, 2021, Hux was diagnosed with ATRT.
Treatment began on July 21, 2021. Hux's treatment plan consisted of two rounds of induction chemotherapy, three stem cell transplants with high-dose chemotherapy, and six weeks of proton radiation. His treatment was going well until his third stem cell transplant. He became very sick with a pneumonia-like illness and had to be on a ventilator for one week. After recovering, Hux started radiation therapy on February 28, 2022, and rang the bell on April 12, 2022. His post-scan on May 1, 2022, was clean!
Hux has suffered from many side effects from treatment over the past few years. In August 2022, Hux was rushed to the ER because he couldn't bear weight. An MRI was performed two days later and was clean. However, because Hux was still on steroids from his pneumonia during treatment, he had fat from his mid-spine to the end that was crushing his nerves. On August 17, 2022, Hux had surgery and all the fat was removed! Hux was discharged to inpatient rehab for two weeks.
On December 17, 2022, Hux became sick with C-Diff and was admitted to the hospital on December 20, 2022. He also had fluid on his lungs and heart. He was given Lasix to clear up the fluid and was discharged on January 3, 2023. His next echo on January 20, 2023, showed that the fluid on his heart had gotten worse since discharge, but the fluid on his lungs was better. At this time, he was also diagnosed with pulmonary hypertension.
Hux was again admitted to the PICU, where he was hooked up to a heart drain and started on sildenafil. He was discharged five days later.
Hux's next MRI was on February 10, 2023. This MRI showed an enhancement that looked like radiation damage. Another MRI was performed on March 14, 2023, and the enhancement was bigger. Hux was immediately admitted for a biopsy on March 15, 2023. On March 21, 2023, the results showed that it was 100% radiation damage!
Hux's next MRI was on May 2, 2023, and his radiation damage was still getting worse. Finally, after two months of talking to his team, Hux started a treatment called hyperbaric oxygen therapy for 30 treatments on July 10, 2023. His next MRI was set for August 1, 2023, and his radiation damage was almost completely gone! The treatment worked! He finished his 30 rounds on August 25, 2023, and was approved for 20 more rounds, which started on August 28, 2023.
On August 31, 2023, Hux had his treatment and coded during that time. CPR was performed for two minutes. Once he was stable, he was admitted to the PICU with no clear diagnosis after a five-day stay. The hyperbaric oxygen chamber has not been restarted.
Hux's last MRI was November 6, 2023, and the results came back clean. His radiation damage only showed up on one image! Additionally, Hux's pulmonary hypertension numbers are even better than they were a few weeks ago. He has been on only 1L of oxygen at night for the last week. He had previously been on 2L at night since the end of May and before that he was on oxygen 24/7.
Hux is now five years old and is in kindergarten. He loves school, and when he isn't watching his favorite show, Ladybug and Cat Noir, he loves to chase his siblings, be outside, and dance! His family has their Make a Wish trip planned to Walt Disney World from February 17-February 23, 2024, for Hux's sixth birthday!
We are hoping Hux will be off oxygen for his Make-A-Wish trip. His next MRI will be the last week of January, and we hope he continues to show no evidence of disease.
Follow Hux’s ATRT Journey: