Tecumseh family seeks van to help transport son

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The Root family spent time in Destin, Florida last July as part of a Lighthouse Family Retreat for cancer patients and their families. Photo submitted.

The Root family, of Tecumseh, is hoping to obtain a wheelchair-accessible van to assist them with the challenges faced by their son, Miles, through a national contest during Mobility Awareness Month, coming up in May. Participants are asked to share their stories and how they “embody the spirit of ‘Life Moving Forward’” in the face of obstacles, and then readers vote for a winner.

The contest is a partnership through several automotive companies and will award at least three vans based on votes obtained as readers take action after reading each participant’s story. Voters can help Miles by going to the following website: http://www.mobilityawarenessmonth.com/entrant/miles-root-tecumseh-michigan/. Votes will be accepted through May 10.

Miles was a “typical kindergartener,” according to his mother, Nicole, when he began suffering from severe migraines in February 2010 that his parents thought were being triggered by a patch therapy being used to correct his right eye. He was put on beta blockers, but then Miles started having equilibrium issues.

On April 26, 2010, Miles had a CT (Computed Tomography) scan which revealed a four-centimeter tumor growing near his brain stem. He was admitted to Bronson’s Children’s Hospital in Kalamazoo to undergo tests and see specialists. Soon, Miles underwent brain surgery to remove the tumor. He awoke talking and moving, but the following morning he’d lost mobility and suffered from cerebellar mutism, part of what is known as Posterior Fossa Syndrome. Pathology results then revealed that Miles had medulloblastoma — it was cancer.

Miles was in and out of the hospital for treatments as he experienced different things such as going into cardiac arrest, and developing epilepsy. He also went through many rounds of radiation and chemotherapy. While he was officially declared cancer-free in August of 2011, a new tumor was revealed in January of this year in the Porter Center student. Miles underwent a craniotomy in February to remove the tumor, but pathology reports confirmed it to be relapsed medulloblastoma. He just began a new round of chemotherapy and radiation at C.S. Mott’s Children’s Hospital on Monday, March 18.

Nicole said while the family has traded an older van in for a leased van, being able to own a wheelchair-accessible van to assist with Miles’ transport to and from treatments would be a “godsend,” making it easier to get him in and out of the vehicle.

Miles, who is 8 years old now, also has three brothers, Skyler, 13, Ian, 11, and Seth, 7, and Nicole said the boys have always been affectionate to their brother and have adjusted to Miles’ need for a good deal of his parents’ attention. They do try, she said, to keep things as normal as possible. Miles’ dad, Jim, is an independent contractor for a delivery company in Toledo. Nicole used to operate a day care business, but now devotes all her time to caring for Miles, along with caring for her other three sons.

She said the biggest challenge — in addition to just learning to accept the fact that life can drastically change in a moment — has been being able to get adequate equipment not only to deal with a child with a disability, but a child with cancer.

“Financially, obviously, it’s a challenge as well,” she said.

But there have also been little positive lessons in the journey.

“We’ve just learned that there are different things out there that we didn’t realize, such as how many kids are actually dealing with cancer and how their families cope. We’re also kind of seeing the broad spectrum of what a disabled child can actually give to you. While there are a lot of burdens, there are definitely those unexpected moments of love.” She said the family has also met different people through Miles’ hospital visits and his school.

“We’ve gotten some amazing support through those relationships,” she said. “We’ve also grown to realize what’s important in our own family and what we need to put first.”

Last summer, the whole family traveled to Destin, Florida, to take part in a Lighthouse Family Retreat which provides families with an opportunity to get away together on the beach.

“Once we got there, they took care of everything and there was even time that someone else took care of the kids so parents could get together,” Nicole said. “That’s something that’s not always available to parents going through something like this, having someone to talk to about what you’re going through.”

She said Miles has been a “trooper” throughout his illness, and added that he’s been so brave through the treatments and all that’s happened to him.

“He just kind of goes with it. We don’t know exactly how he feels because he can’t complain with words, but he goes with the flow,” she said. “He doesn’t fight any of it, so whatever we need to do we can do.”

Nicole said the prognosis is not especially positive for a child with Medulloblastoma, but new treatments are being tried. Two other children at Mott’s are being treated for the same condition.

“We haven’t lost hope,” said Nicole. “You never give up hope.”

To read more of Miles’ story, visit caringbridge.org/visit/milesquinnroot.




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