My Story

Huxley was born on Feb 18, 2018, he did have to spend time in the NICU. While there, he was

diagnosed with Phelan-McDermid Syndrome, similar to Autism.  On April 26, 2021, Hux was 3-

years old when a brain tumor measuring 1.7cm was found in the right frontal lobe of his brain.

Due to its size, he would have another MRI on June 16, 2021, where it grew to 2.2cm. This

tumor was completely removed on June 30, 2021—and he was diagnosed with ATRT on July 2,

2021.

I will never forget his first chemo treatment. He was watching his favorite show, Ladybug and

Cat Noir—and a quote caught my attention: ‘Even if life doesn’t always give us the gifts we are

hoping for, the real gift is life itself.’ It was from a letter that Ladybug was reading. The next time

the episode came on, I listened to the whole letter, which was very profound. I found it later and

took a snapshot—and would read it during treatment whenever I felt lost or scared. I still read it,

even now.

On July 21, 2021, Hux was admitted for his first (out of 2) induction rounds of chemotherapy.

After he finished his induction chemotherapy, he had 3 rounds of high dose chemo with stem

cell transplants and 33 treatments of radiation. Hux was doing well on treatment until his 3 rd

stem cell transplant. He ended up in the PICU on a ventilator with a pneumonia-like illness for

one week.

Once he recovered radiation began on February 28, 2022. Hux then rang the bell April 12,

2022, and his scan on May 2 nd showed no evidence of disease. Fast forward to August 14 th , Hux

was rushed to the ER because he couldn’t bear weight. His MRI was clean, however he had fat

from mid-spine to the tailbone crushing his nerves, and he needed surgery immediately. On

August 17 th his fantastic neurosurgeon removed all the fat! Once home, Hux was recovering well

until January 20, 2023—but ended up getting admitted again due to fluid in his heart. After a 5-

day stay of draining the fluid, he was discharged and able to go home with the requirement that

he be on oxygen 24/7 in addition to pulmonary hypertension medications. Before I knew it, he

had his 10-month scans on February 10, 2023. This scan presented a question of relapse vs.

radiation damage, and a follow-up scan was conducted again on March 14 th . This spot had

grown, and he was immediately admitted for a biopsy on March 15 th . On March 21 st , we got the

results that it was 100% radiation damage, and his next scan was scheduled for May 1st, but his

radiation damage was still getting worse. After some research, he started hyperbaric oxygen

therapy on July 10 th . His next MRI was August 1 st , and half of his radiation damage was gone!

Chamber had worked! He finished chamber August 25 th and got approved for 20 more

treatments, which started August 28 th . August 31 st , the unthinkable happened. Hux went into

chamber as he normally would, but after 45 minutes into chamber, Hux coded and CPR was

performed for 2 minutes, after which he was rushed to the ER. Once stable he was taken to the

PICU. After a 5-day stay, nothing was determined except that Hux unknowingly had a fever

going into the chamber—which can be deadly. He was also starting to show a small infection in

his lungs. Once home, he was recovering well and started kindergarten—only needing oxygen

at night. His next MRI on November 6, 2023 showed almost all of the radiation damage was

gone! His team couldn’t believe it!

Fast forward to Hux’s 6 th birthday, February 18, 2024, his Make A Wish Trip to Florida theme

parks—and Hux had a blast! Once back from our trip, we moved up our MRI to March 8 th

because Hux was acting very lethargic—and the results came back with a 50/50 chance of

relapse because it was only the size of an M&M. We could not conduct a biopsy, and I asked if

we could restart the chamber, because there was a 50% chance it was his radiation damage

again. The chamber was approved and began on April 1 st and ended May 3 rd . His next MRI was

May 17 th , which showed that chamber worked again, it was radiation damage! Hux finished his

kindergarten year and had his most recent MRI July 27 th —and remains ‘No Evidence of

Disease’ (knock on wood)! Hux has started 1 st grade, and when he isn’t watching his favorite

show, Ladybug and Cat Noir, he loves to be outside, dance, cuddle and chase his siblings. He is

learning how to jump and run and is working on one step directions. Hux has been through so

much, he is my WARRIOR!