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Honored Kid Ashton P. Age 6

Ashton P.'s Photo
Location
Murfreesboro, TN, US
Diagnosis
Medulloblastoma High Risk
Date of Diagnosis
November 2017
Status
In treatment
Treated At
Monroe Carell Jr. Children's Hospital at Vanderbilt

Message

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 receives Speech Therapy, Physical Therapy and Occupational Therapy. He has come a long way from that first point, but no where near our old Ashton. A few weeks after his brain surgery, Neurosurgeons, believed that his Cranial Spinal Fluid was not better 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 includes 6 cycles of high dose Chemotherapy to complete, cycle’s 4-6 will require stem cell rescue’s or transplants. Currently, we are waiting Ashton to recover from cycle 3 still and we are behind schedule. The transplant team is starting a Plan B and sending us home from the hospital for two weeks so that Ashton's body and bone marrow can hopefully recover. His white blood count and ANC have returned but his Stem Cells have not yet. During the 2nd week at home shots of neupogen will start up again and hopefully his Stem Cells will return. After we successfully collect the stem cells, we can start the cycles 4-6 and have the 3 stem cell transplants. After chemotherapy is finished, it is our hope that we can do 18-24gray radiation or none at all. We will still have to take Ashton out of state to recieve his therapies for his Posterior Fossa Syndrome when all the cancer treatments are done since there are no rehabilitation facilities in our state. We are so hopeful Ashton can resume magnet school and normal activities by summer of 2018. He's our first born and first love.
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