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.  His next full brain and spine MRI is scheduled for Oct. 24.

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