Young man with terminal illness not ready to stop rolling

Kyle Osborne, 20, has put a lot of miles on his Tilite Aero Z wheelchair, and it’s in dire need of repair. (Adolphe Pierre-Louis/Albuquerque Journal)

ALBUQUERQUE, N.M. — Apparently, he wasn’t supposed to live so long.

But that’s Kyle Osborne for you. He may have a cancer for which there is no cure, but that’s no excuse for giving up.

“I stay positive and I just stay going,” he said. “I don’t know. I don’t let things get to me, and … I don’t know.”

Which is to say he doesn’t think much about how he does what he does. He just does.

He’s been doing that since he was diagnosed in April 2016 with a rare and vicious variant of myxopapillary ependymoma metastasis, a cancer that attacks his spine and brain.

It’s so rare that doctors have told him he is one of only a few of cases in the country. Of those, he said, his is the worst, with 17 tumors bearing down on him.

He was a Volcano Vista High School senior when he was diagnosed, a basketball player and LeBron James’ biggest fan.

We met him in May 2017 for this column at a time when things seemed pretty dark. Not knowing how much time he had left, Osborne, then 19, made a bucket list. Topping the list was meeting James, then the king of the Cleveland Cavaliers.

Osborne might as well have asked to meet the man in the moon.

But Osborne has a way of beating the odds. And he knows everything, including the moon, is within reach with the right attitude and a community of angels behind you.

They got him and his family to Cleveland, where he was given a hero’s welcome, floor seats to a Cavaliers playoff game and a rare moment with King James.

Osborne continues to beat the odds, surviving far longer than doctors predicted. So he has another dream, another request of his angels, this one far more down to earth but harder to attain – so far.

He needs wheels.

Osborne, just days from turning 21, put a lot of miles on his Tilite Aero Z chair, a lighter-weight model purchased by his family that makes it easier for him to get around on his own power. So much use has worn out both the wheels and front casters.

The footrest is also missing a screw and other parts of the frame are in need of repair.

Medicaid has declined to pay for replacement parts, saying that he is on hospice and his condition is considered terminal.

That, Osborne thinks, is just giving up on him.

“It’s not like I’m going to die tomorrow,” he said. “I’ve been on hospice for a while, for pretty much the entire time. But I’m on hospice, not in hospice.”

He still has miles to go before he sleeps.

Osborne said that for about 10 months he’s tried to convince the insurance folks that the repairs are a reasonable request, but he’s been run around in circles. Recently, he started a GoFundMe to help pay for wheels and other parts of the chair, which he estimates will cost about $3,000 (his chair, he said, cost nearly $6,000).

Numotion, a local wheelchair supplier, has provided a loaner chair, but Osborne said it’s not an adequate substitute for the chair that had been custom-fitted for him.

It’s just not his chair.

“My wheelchair gives me independence and improves my quality of life,” he said. “My wheelchair wheels are like shoes for people who walk. I need them to be able to function in my life.”

It’s a different life from what he had expected. In early 2016, he started experiencing back pain and numbness in his legs. An MRI that April discovered the 17 tumors.

He had surgery to remove them from his spine and more than a dozen radiation treatments to burn off the ones in his brain.

But tumors grew back at such a rapid pace that his doctors at the University of New Mexico Hospital and the UNM Cancer Center were flummoxed.

He lost the use of his legs and was in constant pain – 5 to 7 on a scale of 1 to 10, he said – and he was put on hospice.

He was also part of a clinical trial for an experimental treatment, which bloated his once-athletic build, but brought him no closer to remission. That trial ended about a year ago.

Osborne is currently not undergoing any specific treatment. Another clinical trial is possible, but because of ongoing abnormalities in his electrocardiogram, which tests his heart activity, he has not qualified.

For now, there are other dreams to pursue.

Last October, he persuaded the city of Albuquerque to install a sidewalk near his West Side home to make his three mile round-trip wheelchair ride to a nearby Walgreens safer and easier. He helps others work toward their hoop dreams by helping coach the basketball teams at Volcano Vista.

He’s made his peace with his basketball hero James’ move from the Cavaliers to the Los Angeles Lakers, a team he had despised.

“I like LeBron, but I hate the Lakers,” he said. “But I guess I’m a Lakers fan now.”

And he keeps on rolling, beating the odds, everything still in reach.

UpFront is a front-page news and opinion column. Comment directly to Joline at 823-3603, jkrueger@abqjournal.com or follow her on Twitter @jolinegkg.

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