September Jay Fund Hero – Miles Root & His Family!

Today’s Jay Fund Hero – Miles Root

When a child is diagnosed with cancer, the whole family is affected. Understandably, parents and caregivers tend to focus on the pediatric patient while their other siblings may be unintentionally overlooked. This family, like so many others, are facing childhood cancer together and head on – selflessly fighting for a miracle. Miles’s brothers have been by his and their parents side throughout this unimaginable ordeal, with love and compassion for each other.
Pictured here are Miles with his mom and dad, and brothers Skyler (14), Ian (12), Seth (7) taken at a recent Detroit Tigers game through the Dreams Come True program.

Nominated by his mom, Nicole McLain Root, she sent us his pictures and shared this: “This is our son, Miles! He was diagnosed in April of 2010 with Medulloblastoma, at age 5. Many complications after his first tumor removal surgery left him multiply disabled. He was declared ‘in remission’ in August of 2011. In January of 2013, a new tumor was found and he underwent surgery once again to re-sect his tumor; NO complications! In July, two new tumors were found. Miles is considered to be on Palliative Care and we were told ‘it would not be unreasonable to spend Christmas with him’. We still hold onto Hope & a Miracle! He is an AMAZING young man, along with his 3 brothers!”

As published on Caring Bridge:
It began in February 2010. Miles was suffering from severe migraines that we thought were being triggered by his patch therapy to correct his right eye that was turning in (also his lazy eye). After seeing the doctor every two weeks and being put on a beta blocker for his migraines, we started noticing some equilibrium issues. Once the doctor saw this for himself, he ordered a CT. Monday, April 26, we had a CT at 9 am. Four hours later we received a call from his doctor to come to his office to discuss the results we were supposed to discuss the following Monday. The CT showed a 4 cm tumor growing near Miles’ brain stem. Miles was preadmitted to Bronson’s Childrens Hospital in Kalamazoo and we spent the next few hours packing and preparing. Tests and doctors; so many of both. So much information to absorb in such a short amount of time. MRI showed no tumor growth in the spine, but the detail was amazing in viewing the tumor in his brain. Wednesday, April 28, Miles underwent brain surgery to remove the tumor. He awoke talking and moving. The following morning, Miles’ right side was not moving and he was suffering from cerebellar mutism; all part of Posterior Fossa Syndome. These are rare effects, but not uncommon when working in this area of the brain. It was horrifying to realize that 24 hours before your little guy was playing, talking and giggling in pre-op. Fridays (April 30) MRI showed they were able to fully remove the tumor! About 45 minutes later (while the 3 boys were visiting Miles in the PICU) we received the Pathology results: Medullobastoma . . .cancer. Although they told us in the beginning this is what they thought it was, it was surreal to hear. Sunday, May 2, an MRI showed no fluid build up in Miles’ brain and the drain tube was removed (meaning no shunt was needed). We were able to FINALLY get out of the PICU. Therapists evaluated Miles and determined Inpatient Therapy was best for him. We were transferred May 5th by ambulance to Children’s Hospital of Detroit to be close to family. Monday, May 10, we were sent back to Bronson due to leakage from his incision. The leak led to an Anterior Third Ventriculostomy and the finding of Bacterial Meningitis. This would lead us down a path so different than the one we were already on. On May 23, when Miles was almost complete with his antibiotics for the Meningitis, he cardiac arrested. An ulcer that was not caught hemorrhaged causing him to arrest. A week after, May 31, Miles again hemorrhaged and arrested leading to emergency surgery. The first cardiac arrest caused damage to Miles’ brain from the lack of blood oxygen to his brain during the hemorrhage. He came home June 19 basically a 40 lb infant. Miles is relearning to do everything. Cognitively Miles seems to be intact, but his strength and coordination were altered. He has completed 31 rounds of radiation and endured 9 rounds of Inpatient chemo. Miles was officially declared Cancer-Free in August of 2011. He had his port removed in March of 2012. A 3-month routine MRI in January of 2013 revealed a new tumor. He had a craneotomy on February 15th to remove the new tumor. Pathology reports confirmed it to be Relapsed Medulloblastoma. Miles is extremely brave and has been a complete Trooper though this process! We couldn’t be more proud of him!! You can read his full story at www.caringbridge.org/visit/milesquinnroot.