Miles

Miles was diagnosed with ATRT (SHH subtype, M+ patient) on Christmas Eve 2022 at age 3.  He had a 99% resection of his primary tumor at OHSU Doernbecher in Portland, OR and began ACNS003 at Seattle Children's early January.  His treatment plan included 3 rounds of induction chemotherapy and 3 rounds of high dose chemotherapy with stem cell rescue.  Intrathecal topotecan was also used throughout treatment to help clear the disease spread located in other areas of his brain and spine.  

Miles concluded ACNS in mid-June 2023 and had an incredible response to frontline treatment.  With this in mind, his team at Seattle Children's along with our family decided to pursue maintenance chemo (Tazemetostat with monthly intrathecal Topotecan) in lieu of radiation at that time.

Miles relapsed in Jan. 2024 with a leptomeningeal spread.  He underwent proton radiation of his brain and spine at Fred Hutch in Seattle, WA.  He finished radiation in mid March, and his April MRI indicated that many of the cancerous spots were gone and significantly smaller in size (a miracle!).  The same was observed during his July 2024 MRI, however, his neurosurgery team noticed an increase in the cranial spinal fluid that we've been monitoring.  Miles underwent a procedure to drain the fluid and place a new shunt valve.  Shortly afterward he experienced a tonic seizure, but fortunately is OK.  He had his port removed in late August and has since received a series of rapid MRIs to monitor the residual fluid in his brain post surgery.  

Miles' January 2025 MRI showed subtle growth in a spot that was being monitored.  It was surgically removed in March and his July scan showed stability.  His MRI in October 2025 revealed new lesions on his brain. Miles received a dose of immunotherapy and gamma knife radiation treatment.

An MRI in January 2026 showed promising results to the area treated by the immunotherapy and gamma knife radiation treatment, but unfortunately displayed a new area of concern. Miles received IV immunotherapy infusions every three weeks to help keep things stable and give Miles more good-quality time.

Unfortunately in April 2026, scans showed the results were not what his family and care team had hoped for. He quickly started a new intensive treatment plan including a combination of immunotherapy and intrathecal chemotherapy.

Outside of treatment and recovery, Miles is still doing remarkably well. He’s keeping up with school, breakdancing, swimming, and many of the activities he loves.

By June of 2026, Miles' MRI showed mixed results. His disease was larger in some areas, stable in others, and there are also some new areas of concern. His family was encouraged to learn that his ATRT appears to be growing at a slower pace, which, in the grand scheme of things, is meaningful. Realizing that the intrathecal chemotherapy was likely not effective, and even if it provided some benefit, it was more intense than his family would like for Miles, they decided to continue receiving the immontherapy treatment, Nivolumab, on a regular basis.

But by the end of the month, unfortunately Miles experienced a stroke like event, and new imaging confirmed disease progression. Miles continued the following week to experience multiple seizures, and his family began to transition him to at home comfort care.

His family shared on his caring bridge page, This is an incredibly difficult step, but our greatest hope is that he is surrounded by peace, comfort, and love.Even in the midst of this heartbreak, we are still sharing beautiful moments with him. Every smile, every cuddle, every moment together is a precious gift. Those moments are the miracles we are holding onto. Please continue to pray for Miles—for his peace, his comfort, and that he feels nothing but love. Please also pray for our family as we walk through the unimaginable. We are completely heartbroken and trying to cherish every moment we have with our perfect boy.

July 10, 2026 marked seven days of being seizure-free. Miles' medical team is encouraged that the seizures appear to be much better controlled and is cautiously optimistic that they may not become an ongoing issue. By the end of July, Miles was settling back in at home on hospice and making incredible strides. He’s regained much of the strength on his right side—something one of the local doctors said early on he would likely never recover. "Watching him run, break dance, color, build Legos, and simply be a kid again has felt nothing short of miraculous." As Miles continued to improve, his family made it their mission to fill these days with as much joy as possible, embrace the ordinary moments, and slowly settle back into their routines.

In August, an MRI revealed a small amount of disease progression. Despite ongoing symptoms, Miles was driven by a fierce determination to get back to school and be in the classroom.

Please join us in keeping Miles and his family in your prayers. His family shares, Miles is feeling well and is happy, and despite the circumstances, we are incredibly grateful for today. ❤️

You can keep up with Miles' journey on his Caring Bridge:  https://www.caringbridge.org/visit/missionformilescherry