Our sweet boy, Miles, fought Medulloblastoma bravely and honorably for 4 years. He was diagnosed in April of 2010. He suffered Posterior Fossa Syndrome with Cerebellum Mutism as a result from the tumor resection surgery. After his incision leaked, he contracted Bacterial Meningitis. Just shy of finishing antibiotics for the Meningitis, Miles cardiac arrested from an undiagnosed duodenal ulcer that hemorrhaged. Lack of blood oxygen caused diffuse damage to the motor areas of his brain. A week later, Memorial Day, Miles again cardiac arrested from the same ulcer that again hemorrhaged. He was taken into emergency surgery to save his life. He came home after 7 ½ weeks in the Hospital (5 in the PICU) completely disabled. After six weeks of recuperating at home, he had a port and g-tube placed so he could begin 6-weeks of radiation. After radiation, Miles had a shunt placed. He began having seizures again, as he had some after his cardiac arrests, and was later diagnosed with Symptomatic Epilepsy. He completed 9 rounds of inpatient chemo over the next year. During all of this, he did intensive therapy and was transferred to a Multiple Impairment Classroom with the Special Education system. Miles was officially in Remission in August of 2011! We made a move 200 miles to better meet his needs shortly after.
We enjoyed some time being cancer-free by focusing on rehabilitation and education. We also spent this time fighting to obtain adaptive equipment. It was Wonderful watching him regain energy and hear his giggles more often. We were adjusting to our new way of life.
In January of 2013, Miles’ routine MRI showed a new tumor in his right ventricle. Looking back on his October 2012 scans, it was visible when knowing where to look, but would have been monitored. In February of 2013, Miles’ new tumor was resected successfully and without complication! He began a Relapse Medulloblastoma protocol in March. Complications from the intense chemo were too much for Miles and we had to stop in June. His July MRI showed it wasn’t working as another tumor was found in his right ventricle. Due to Miles’ neurological state from his brain damage, he did not qualify for any phase 1 or 2 trials which were the only other options. Choosing Quality of Life, we decided to do metronomic chemotherapy and a second opinion agreed. This bought us time using low dose chemo continuously with fewer breaks. We were told it would not be unreasonable to have him with us for Christmas. The tumor growth and spread continued, but Miles continued to do well considering. We chose to go on Hospice in September of 2013. In February, we did what would be Miles’ last MRI. It showed massive spread in his brain and spread to his spine in two locations. On March 6, 2014, Miles took his final breath in my arms with his Dad and three brothers (Skyler, Ian and Seth) by his side. He was finally Free! He received his Miracle in Heaven!
For four years Miles endured more than most could. His strength and determination never wavered. Through it all, he always found a reason to Smile! Our goal is carry on in his memory with the same strength and determination and Always with a Smile. We are continuing his fight! Not a Moment passes that he isn’t thought of or greatly missed.
I have pledged to Shave my head with The 46 Mommas Shave for the Brave in Kansas City, MO on June 20, 2015. So many times for the past 5 years we have been told ‘If you need anything, please don’t hesitate to ask’. We Hope that those that have spoken these words will stand behind them! I am Asking!! Please Help us fund Valuable Research for Childhood Cancers. Donate as little as you can afford or as much as your heart desires. Nothing is too small or too big! And Please, Share, Share, Share!!
Thank you for anything you are able to give and Supporting my efforts! Bald is Beautiful and I Hope to Rock It!
Please feel free to cruise the St. Baldrick’s site to learn more about their organization and the statistics about Childhood Cancer!