Jaxson

Reflections lovingly shared by Jaxson’s mom

Jaxson was diagnosed with ATRT shortly after celebrating his 1st birthday in June 2015. He started having excessive drooling, especially when he was sleeping, and “odd” facial movements a week after his 1-year-old check-up that caused me concern. After multiple visits to his pediatrician, ENT, and our local emergency room with no answers, we went to CHOP. Within 13 minutes of viewing videos of concerning behavior, Jaxson was admitted to the neurology floor and hooked up to monitors for suspected seizure activity.

He was quickly hooked up, and an MRI was scheduled for the next day.

A couple of hours later, doctors came in and informed us that Jaxson was having continuous seizures. They had given him the maximum amount of medication allowed in an attempt to stop the seizures, and he would need to be transferred to the PICU for more specialized care.

While we were rolling down to the PICU, they found out that there was an opening in a CT scanner and took a detour to see what was going on. That is when we got our first glimpse of the monster that was taking over our beautiful baby’s brain.

The MRI was carried out as planned the next day, and the day after that, Jaxson was rolled into his first brain surgery.

It was scary, but the surgery that was estimated to be 6 hours was less than 3. Jaxson’s amazing neurosurgeon removed the tumor completely and referred to it as “superficial.” We were told he was No Evidence of Disease, a term we would grow to love!

Two days later, Jaxson was transferred from PICU to Oncology. We stepped out of the world of blissful ignorance and into the world of Pediatric Brain Cancer.

The next day, we received the official diagnosis of ATRT. We were told that approximately 30 kids are diagnosed with it each year, and treatment would be long and hard. “We’re going to make him sick, and when you think he’s sick enough, we’re going to make him sicker. Hopefully, when we’re done, he will recover and live a long life.”

Jaxson had his port placed, all of his pre-chemo testing, and we signed all the paperwork approving the administration of toxic chemicals to our sweet baby boy. The potential side effects were reviewed, but really, what choice did we have? This was the only way we could potentially save him.

Jaxson breezed through the 1st round of chemotherapy, and we went home but returned just a few days later for fever admission when the chemo wiped out his system, and he had neutropenia. This would be a typical occurrence throughout treatment, and Jaxson was consistent to the point we could plan for his neutropenia admission.

Before starting his 2nd round of chemotherapy, Jaxson had to have another brain surgery to have an Ommaya placed. This would be used to inject chemo agents directly into his CSF to help attack any potential undetected cancer cells. Surgery went well, but administering chemo in this way caused him to be extremely sick, but they told us they were going to make him sick, so we rolled with it.

Two more rounds of inpatient chemotherapy and another MRI that confirmed that Jaxson remained NED, and we headed into Focal Proton Radiation at the University of Penn. Jaxson took an oral chemotherapy drug at home and was placed under anesthesia every weekday for 6 weeks so they could zap his brain with radiation. They needed to make sure that there was no chance of the cancer growing back, and we were told that radiation was a key component to fighting this cancer.

Radiation was the easiest part of Jaxson’s treatment plan. He was home every day, he was not sick, his blood counts were stable, and he was able to have fun!

When radiation ended, Jaxson had a month-long break from treatment. We took a family vacation to Disney World and just enjoyed our time together.

His next MRI showed that he remained NED, and he started his 1st of 12 rounds of maintenance chemotherapy. A year later, in December 2016, Jaxson took his last dose of chemo! He was two and a half years old, finished with treatment, doing amazing physically and developmentally, and most importantly, he was still NED!!

This was a scary time because we knew how aggressive ATRT was, but there was nothing more they could do. He was NED, and we had to be thankful for that and start living a more normal life.

Hospital follow-ups and tests went quickly from every 3 months to 6 months, and we fell into a daily routine of school, sports, and family.

In August 2019, Jaxson was doing absolutely amazing and was getting ready to start Kindergarten! He was so excited to tell everyone about school when we went for his visits and his MRI. We were happy and in an amazing place as we started the new school year, approaching the five-year mark since diagnosis, and once again heard that wonderful news: NED!!

At his visit in August 2019, Jaxson's team of doctors wanted to spread his visits to annually. I said no, and we scheduled his next MRI for February 2020.

In February 2020, Jaxson walked into his MRI. It was routine at this point, and he was doing great, so we had no reason to suspect that anything was different. We were completely blindsided when we were told that they saw something on his MRI. We could wait 6 weeks and scan again, or we could schedule a biopsy. We know the nature of this beast, so waiting 6 weeks was not an option, and surgery was scheduled for the next Monday. Just a few days later, it was confirmed that the beast was back.

Relapse treatment isn’t really a protocol like frontline treatment is. It’s a mishmash of treatments that they hope will work. We geared up for 2 rounds of intense chemotherapy and stem cell collection to be used at the end of treatment. Jaxson breezed through treatment again; he suffered many side effects like mucositis and neutropenia, but overall he did well. In the meantime, COVID hit, and all the craziness of that just made everything harder.

Another MRI after the 2 rounds of chemo and before his next phase of treatment showed he was NED! We were heading into cranial-spinal radiation this time, scary because it was different than just focal to one area of the brain, but again, considered a key component to destroying this beast.

Another 6 weeks of daily anesthesia, but my man did awesome, and it was once again the easiest part of treatment!

Jaxson had a month “off” following radiation, and we enjoyed it by spending time at Grandmom and Poppy’s beach house—no crowds and sandy feet! Jaxson’s favorite place to be!

August 2020, Jaxson’s MRI remained NED, and we headed into his final phase of treatment, High-Dose chemotherapy with Stem Cell Rescue.

This would be an extremely difficult course of treatment. One of the chemo agents he would receive required him to be scrubbed in the shower every couple of hours because it excretes through your skin, and if it is not scrubbed away properly, it will cause burns. At this point, Jaxson also had extreme anxiety every time he needed to have his port accessed, which was every week. He also had to have a Broviac line placed, so he had weekly dressing changes with that as well. He also developed PTSD from frequent COVID testing. However, Jaxson still amazed doctors when he was discharged in just 4 weeks following the 1st and 2nd cycle of transplant.

On October 9, 2020, Jaxson walked into the hospital for his last cycle of transplant, his last round of treatment, and we were done! We were discussing long-term maintenance to make sure this beast is slayed for good, and we were happy to be able to celebrate!

On October 13th, his body started to weaken. He slowly lost his ability to walk, and we could see the toll treatment had taken on him. Doctors tried to reassure me that this was normal with this intense treatment and it all just caught up to him. They would do an MRI and transfer him to rehab so he could start to get his strength back.

The radiologist read the MRI and stated, “treatment effects but no indication of relapse,” and Jaxson was transferred to rehab. 

After transferring to rehab, Jaxson continued to decline and did not improve with the intense therapies, so they decided to do another MRI. On November 25, 2020, Jaxson’s MRI confirmed relapse: 2 spots in his spine and an area of concern in the brain. It also confirmed myelitis, swelling in the spinal cord, a “rare” side effect of the radiation. Myelitis was the reason we were sent home on November 27, 2020 with no options for treatment. 

We would try infusions that will hopefully decrease the swelling, and we would try Tazemetostat. Maybe, just maybe, something would give us more time. 

I had to battle the insurance company for 7 weeks to get the Tazemetostat delivered. It should not take that long to get a potentially life-saving medication to your child, but that’s what happened, and we just didn’t have enough time to see if it would have made a difference. 

In January 2021, we found out that Give Kids the World in Florida was reopening from their COVID shut down. We were approved by the Elle foundation for Jaxson's Wish trip, and we were heading to Florida in February. I prayed he would be well enough to make and enjoy the trip. 

The week before the trip was crazy, with doctor appointments 4/5 days and included an emergency admission, but we headed to Florida on February 20, 2021. 

We had planned a trip to the hospital Monday and Friday while we were there for transfusions. Jaxson enjoyed Tuesday and Wednesday in Disney riding the rides he loved. Thursday, he was tired. Friday, he didn’t wake up. He was admitted to Arnold Palmer ICU, and his grandparents, aunts, and cousins flew down to say goodbye. 

Jaxson earned his wings on Sunday, February 28, 2021. 

I had to beg my baby to take his last breath because I knew he was too good for this world. I had to tell him to leave me, and I had to lie to him and tell him I’d be okay because I knew I could not make the pain go away. I could not cure him.

Cancer took the heart from my chest and sent it to Heaven.

Cancer stole my baby!

Cancer cannot steal our memories, and our memories are great.

During our time fighting the monster, we lived a life worth living. We lived each day like it could be our last because we knew the possibility was real. We spent a lot of time with family and friends. Jaxson's favorite place was the beach, and second to that was Disney. Jaxson loved Halloween; he loved dressing up. Even when we were at the hospital, he had a suitcase of costumes that traveled with us. He loved his big brothers, his cousins, his grandparents, his aunts and uncles, his dad, and his mom. He especially loved playing Xbox with his big brothers and their friends. Jaxson loved camping: playing in the dirt, campfires, fishing, roasting marshmallows but not eating them. Jaxson traveled to Jamaica for his Uncle Scott’s wedding. He swam with dolphins in 2019. He went to the zoo, the aquarium, and the boardwalk. Jaxson was happy, and everyone who met him fell in love with him. He was truly a great kid, and the world is missing an amazing person.

Jaxson’s dad, big brothers, and I are learning how to navigate life without him, and it’s not an easy road. Jaxson is missed every second of every day. Jaxson was worth so much more than this world had to offer him.