Hux
Huxley’s family shares this reflection on his life, his incredible 4-year post-treatment journey, and the miraculous spirit he carried with him every day.
Hux was nearly 4 years post-treatment with no evidence of disease; he never had a relapse. He was such a silly, chill, and determined boy who loved to be outside, loved to dance, and loved to watch his favorite show, Ladybug and Cat Noir.
At the end of April 2025, he started having seizures. After a few months on medication, they began stabilizing in late July. Hux started 2nd grade in August and had an MRI that showed no evidence of disease that same week. However, due to his seizure meds, he started falling frequently, and we began using a helmet to keep him safe.
On September 22, two bleeds in his brain and spine were found. A week later, on October 2, he was admitted due to illness. He had an MRI during that stay that was never finished because a chain-like bracelet was found in his abdomen in three pieces. Only two came out before we went home, and what we were able to see of that MRI showed his bleeds had changed drastically. The right bleed was bigger, and he had a new bleed from his posterior fossa all the way down his entire cervical spine.
He was sent home on the 25th. Then the unthinkable happened late on the night of October 29. Hux fell while walking, just like the multiple times before. As always, he had his helmet on and we have carpet. He seemed okay...tired, but okay, and he stayed up a little longer before going to bed. When I went to wake him on October 30 at 7:00 am, he was unresponsive.
I called 911, and once at the hospital, he was made a DNR. We were told he wouldn’t make it through the night. I just said, "Yes he will," because Hux loves Halloween and wants to be Cat Noir forever. He made it through the night. Right before his heart stopped, I told him one last time, "Hux, it’s us against the world, as always," and gave him a hug and kiss. He passed away on October 31 at 10:23 am.
Hux was cremated on November 7 with mom and dad by his side and was able to be taken home that same day. We are planning a celebration of life over the summer so that it can be held outside.
We miss him terribly. Occasionally, we put on Ladybug and Cat Noir and play what we call "the pause game," seeing who can pause it at the funniest moment. It reminds us how much Hux loved and would laugh at his show. To keep his memory alive, we also put together shadow boxes with his siblings and decorate his shelves and tree.
We are also in the process of starting a nonprofit in his honor called Huxley’s Miraculous Warriors, which will focus on special needs and sensory-seeking warriors going through treatment and up to 2 years post-treatment.
In his short 7.5 years, Hux had many adventures. Our favorites were going to Universal Studios for his 3-year post-treatment celebration and meeting the voice actors of Ladybug and Cat Noir. Lastly, I want to share two quotes from Hux’s show:
1: "Sometimes the road can be winding; you can even get lost along the way. But with the help of the right people, you will always find your destination."
2: "Even if life doesn’t always give us the gifts we were hoping for, the real gift is life itself."
Looking back on a miraculous journey:
Below are the archived updates from Huxley’s time as an ATRT Fighter.
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!
January 2024 Update: Hux's MRI continues to show no evidence of disease. Over winter break he celebrated a special Make-a-Wish dinner with his favorite characters from Ladybug and Cat Noir! His next MRI is scheduled for April 8th and he will have his final visit with his oncologist before he goes into survivorship clinic.
July 2024 Update:
In March, Hux had a brain scan, and there was a possibility of relapse. Thankfully, there was also a chance it could be radiation damage. He was able to do another round in the hyperbaric chamber from April 1st to May 3rd.
In between chamber treatments, on April 12th, Hux turned two years post-treatment. To celebrate this milestone, the family enjoyed getting professional pictures taken and a special dinner together.
Hux's scan on May 17th confirmed it was radiation damage! The chamber treatment worked again, and Hux is still NED (No Evidence of Disease)!
On May 31st, Hux's school held a bubble walk for brain cancer awareness. It was a fantastic experience, and even Hux's siblings got to join in! June 3rd was Hux's last day of kindergarten! He'll be starting 1st grade in the fall.
June 30th marked 3 years since Hux's brain surgery to remove his tumor. He was diagnosed just 2 days later, on July 2nd, 2021. He's come so far! Hux is working hard in therapy to improve his running and jumping.
August 2024 Update:
Hux had an MRI on July 27th. On August 1st, his neurosurgeon appointment revealed that he is still NED! His radiation damage has even improved.
Hux recently joined an organization called Fire Project Buddies. On July 22, the local fire and police department visited him with lights and sirens, which he loved.
Hux will start 1st grade on August 15th and has a survivorship appointment scheduled for September 18th. His next MRI is in October. We hope he remains NED.
October 2024 Update: Hux had his MRI Oct 11th and the 16th we had his appointment with his neurosurgeon. HUX REMAINS NED! His neurosurgeon was extremely happy with this MRI! He has also moved to brain MRI every 4 months and his spine is now yearly! He also had his Pulmonary Hypertension specialist appointment on Oct 15th and that went great! His bloodwork and echo looks awesome! There is no sign of pulmonary hypertension and he can officially come off oxygen and only needs it if he is sick!
On Oct 13th Hux got to meet the voice actors behind his favorite show, Ladybug and Cat Noir! He had the best time! It was such a special moment! He gave both of them a hug when they used their character voices! Besides Hux recent adventures he is doing great! We look forward to his Holiday adventures that are coming up and watching him improve even more!
Februrary 2025 Update: Hux has been doing well in school, and he loves 1st grade! He recently learned how to open doors, and can now go from sitting to a half-kneel to standing like a pro! His communication skills are also improving by leaps and bounds!
Hux's latest scan on January 22nd showed he remains NED! His next scan is in May! Thanks to Project Fire Buddies, Hux and his siblings are going to Universal Studios for his 3-year post-treatment celebration in April! His family is so excited to surprise them with this wonderful gift!
Follow Hux’s ATRT Journey:
· Huxley’s Road to Recovery Facebook Group
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