Ashton's Brain Cancer Journey

Sadly, our Fight isn't over. Today, I am personally taking to this site for my 6 year old son whom was diagnosed with High Risk Medulloblastoma (4 tumors) Category IV, November 16, 2017. Our family experienced an outpouring of kindness on this site when a family member started a campaign for us in the very beginning of diagnosis. Since diagnosis, Ashton has developed Cerebellum Mutism/Posterior Fossa Syndrome (temporary brain damage lasting up to 5yrs) due to Surgery, Shunt surgery, endured High Dose Chemotherapy for 8 months, received 3 Stem Cell Transplants and gets Nutrition strictly from his NG tube. Due to his transplants, he has to stay at home and away from people for 100 days. He receives Physical Therapy, Occupational Therapy and Speech Therapy. He can not walk still due to the Posterior Fossa Syndrome. Our last MRI a few weeks ago showed that even though we did such aggressive Chemotherapy there is still Residual Tumor left on his Right Ventricle and Pituitary Gland. We are devastated and know this means we have to travel in two weeks and separate our family once again. Middle Tennessee does NOT offer Proton Therapy for Pediatrics. We were originally going to go to CHOP (Children's Hospital of Philadelphia). But due to Ashton's physical condition and Transplant restrictions, we have opted and found a Proton Center about 2hrs away, in Knoxville TN where our Radiologists at Vanderbilt University will have full control over Ashton's experience. The problem we face with going to a private facility and not another children's hospital, is that Ashton will not be secluded on an oncology-transplant friendly atmosphere. We will need to spend our own money on a hotel so that Ashton remains secluded from others so that he does not get sick. Transplants are very tricky, in that one day Ashton's White Blood Count and Absolute Neutraphil could be super high and strong, and a day or week later Ashton could be crashing needing transfusions to bump him back up. So he is very susceptible to becoming sick. There is a Ronald McDonald house nearby, but the living situation is communal and that is not okay with our Transplant Team nor us, as this would be very dangerous for Ashton's health. We have found a hotel that will discount us some rates since we will be there for long term, 6 weeks is our projected schedule. Ashton has 30 radiation treatments at 23gray and boosts of 54 to the tumor beds and tumors. We really don't want to do radiation, we are heartbroken for what this will mean for Ashton longterm. There is a high percent this treatment will knock out his Pituitary Gland completely and will need hormone replacement. His short term memory will be greatly affected. And therapies for a long time will be needed for Ashton to make a decent recovery. Main thing is, we'll have our boy, since we took the long road of high dose chemotherapy and stem cell rescues, we will have saved him from doing harsh radiation treatments that would've made him dependent on us for life. We wish so much his high dose chemo wiped everything out, but that isn't our situation right now, we have to do some sort of radiation to get the disease fully out of his body. Proton is our best option right now. Our money sadly is dwindling away with our all our bills every month and we have very little left from our original gofundme. Hotel Expenses, Food Expenses, Gas and Extra Care for my 3yrold who will be left with family members for 6 weeks is where this fund will go too. Ashton has been through so much these past 9 months, hopefully, this proton radiation will be the last step in Ashton's Brain Cancer Fight. Any help is greatly Appreciated. #ashsmash #ashstrong #smASHcancer