Honored Kid

Ashton P.

Age 7
Ashton P. Kid Photo

Location

Murfreesboro, TN, US

Diagnosis

Medulloblastoma High Risk

Date of Diagnosis

November 2017

Status

In maintenance

Treated At

Monroe Carell Jr. Children's Hospital at Vanderbilt

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My Story

Ashton had been progressively experiencing nausea, vomiting , a gate in his walk, headaches at home and school. Finally his eye started turning slightly inwards and we got Ashton that 2nd opinion we needed to confirm our worries. We discovered he had multiple brain tumors. We were immediately rushed to Vanderbilt’s children’s hospital on November 16, 2017 due to hydrosyphilious. He had a tumor the size of an egg blocking spinal fluid coming and going from the brain. He underwent a 6hr brain surgery and it was discovered he had a different tumor then expected. He had Medulloblastoma. About 250-500 children are diagnosed with Medulloblastoma a year. He was diagnosed with Stage 4 High Risk Brain Cancer, Medulloblastoma Category 3. Medulloblastoma is broken up into 4 Categories due to the molecularly makeup. Category 1 and 2 have great response and 80% survival rate. Category 3 has 35-55% survival rate and Category 4 has 45-65% survival rate. After surgery, we were crushed to find out Ashton was diagnosed with Posterior Fossa Syndrome, which we never were warned would happen. It happens to 23% of children after the Medulloblastoma tumor is cut into, doctors have little research as to why this happens. He was completely different, thrashing, crying and screaming nonstop. It is temporary brain damage lasting anywhere from 4weeks-2years with a possible full recovery. It leaves kids mute, paralyzed and unable to swallow but can think completely normal. Essentially trapped in their body. Ashton now receives, Physical Therapy and Occupational Therapy. He has come a long way from that first point, and continues to get closer and closer our "old Ashton". A few weeks after his brain surgery, Neurosurgeons, believed that his Cranial Spinal Fluid was not flowing on its own and Ashton would need a Shunt to control the spinal fluid (hydrosyphilious). So it was another surgery to endure and heal from before Chemo. Ashton’s treatment included 6 cycles of high dose Chemotherapy to complete,  cycle’s 4-6 required stem cell rescue’s or transplants. Currently, Ashton completed ALL his Chemotherapy with 3 Stem Cell Transplants. He had to be secluded for 100 days and remain immune smart in public places for still a full year (which will be up June 2019). We hadn't received a CLEAR scan until after we packed our bags (August 2018) to travel for Proton Radiation in Knoxville TN at Provision Cares. I could not recommend a better team to work on Ashton's Proton then Dr.Wilkerson for Pediatrics Radiology. After six weeks of Proton, we headed home and waited 2 months to get scans. November 2018 we received our first CLEAR SCAN (MRI). No actively growing disease! January 4th 2019, we received our 2nd CLEAR MRI and have our next scan set for April 1st 2019. We have decided to stay in State to treat Ashton's Posterior Fossa Syndrome, as we initially thought we might take him out of state and get care 24/7. We feel that Ashton is progressing well enough without the intense therapies. He is walking once again (a little unbalanced), eating again on his own without an NG TUBE, talking again and the ataxia has subsided greatly. The ataxia on his left side remains and intense emotions remain (gets very angry and throws fits and when happy gets super happy).  Plus, being home as a family is more important to us now and not being separated anymore. We are starting Home Bound Schooling in a few weeks and are looking to have Ashton resume magnet school and normal kid activities come Summer 2019. (Finger's Crossed).

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