[motorcyclistonline] - A Personal Perspective on the Value of Ride For Kids | MEGAPHO

[Ninjette Newsbot]

It’s a phone call no parent ever wants to get.

I was on the practice field when it came, working with our team’s offensive line in my volunteer job as a high-school football coach. On the phone was school neurologist Dr. Vernon Williams with news of my son Alex’s recent MRI, which Williams had recommended after Alex suffered his second concussion of the season while starting as tight end and defensive end on our varsity team.


“We found a bit of brain trauma,” Dr. Williams said cautiously, “which is normal for a concussed player…”

Okay, I thought. Not too bad. We can deal with this. But something in his tone told me there was a but coming. And there was.

“But,” he said, pausing for a couple seconds, “we found something else. Something worrisome.”

I froze, and time stood still for what seemed like a full minute, even though it was maybe only four or five seconds. “It’s a mass,” he continued. “One that isn’t supposed to be there.”

My head dropped, I felt adrenaline flood my system, and I mouthed the words, “No, please…” as I exhaled. I stood there, almost uncomprehendingly, and thought this: My healthy, athletic, football stud of a son had what was very likely a brain tumor. Hearing doc Williams’ words were brutal and eerily similar to those of my dad eight years earlier when he called to tell me that my mother had died suddenly in her sleep.

The mass—as our family would discover over the next few weeks via more MRIs and CT scans and then a harrowing eight-hour surgery in which they cut a hole in Alex’s skull and pushed a tool called an endoscope deep into the very center of his brain—was definitely worrisome: a malignant tumor called a germinoma.

What followed was the worst six months of my life, my wife Susie’s life, and very definitely my son’s life.

Many times during those ugly months I had a strange feeling of déjà vu regarding Alex’s ordeal, and the whole subject of children and brain tumors. Which wasn’t all that surprising, as I’d had some contact with young brain-cancer patients and their parents over the years via my association with the Pediatric Brain Tumor Foundation, the group that runs Ride For Kids events across the country.

I first got involved with Ride For Kids while working at American Honda in the early 1990s, right after my first stint (’85–’89) at Motorcyclist. While there I met Mike Traynor, a retired newspaperman who, along with his wife Dianne, had begun raising money for afflicted kids years earlier in the Atlanta area after a colleague’s child had been diagnosed. When I met them, the Traynors were enlisting help from Honda to take the RFK thing national and spending a lot of time at Honda’s Torrance, California, headquarters. Honda ended up signing on as the presenting sponsor in 1991 and helped the movement—which became the Pediatric Brain Tumor Foundation that same year—gain serious momentum.

When I left Honda and took over the editor’s desk at Motorcyclist in 1993, I stayed in touch with Mike and continued to support Ride For Kids events, attending some and writing a column here and there about the movement to keep readers up to speed on the wonderful work the group was doing. My wife Susie, who I’d met at Honda (and married in 1994), was also involved in the RFK charity.


Years later, we brought Alex—six or seven years old at the time—to one or two of the SoCal rides, once treating him to an hour-long sidecar trek with the other 600 motorcycles on the ride. He was too young to realize fully what the kid-patients at that event were going through. But to Susie and me, and everyone else there, seeing those kids and families, and hearing what they were going through, brought many—including me—to tears. It was literally gut wrenching to watch those poor kids and their families deal with such a debilitating illnesses and all the surgeries, chemotherapy, and radiation that go with them. I remember looking at Alex at that event and thinking how unbelievable lucky Susie and I were to have a healthy child.

Of course, Alex wasn’t technically healthy. His germ cell tumor, which was present at birth, was growing right above his brain stem. We just didn’t know it. It would take a concussion—and the subsequent MRI—for us to discover the truth.

I remember feeling utterly helpless when Alex was pushed into surgery at St. John’s Medical Center in December of 2013. Words cannot describe the darkness and despair Susie and I felt waiting for word from surgeon Daniel Kelly and his team after the surgery. When Dr. Kelly finally came out, he had some good news: Although he’d only been able to remove 60 percent of the tumor due to its position near the pituitary gland and some of Alex’s eyesight nerves, the pathologist in the room was able to positively identify the tumor as a germinoma—malignant, yes, and dangerous but one that tended to not spread aggressively and one that was very controlled by a combination of chemotherapy (to shrink the tumor) and radiation (to kill any remaining cells). To us, Dr. Kelly and his team are truly miracle workers.

Obviously, we were incredibly fortunate in a couple of ways, not the least of which was the concussion and lingering headaches, which led to the MRI. Without those, we’d not have found the tumor until it blocked the flow of cerebrospinal fluid, which can cause seizures and even death if not dealt with. Emergency surgery would have resulted, which is much more intrusive and life threatening than the already risky surgery Alex underwent. We were also lucky the tumor was a slow-spreading germ cell type.


For each of Alex’s four chemotherapy treatments he’d spend three full days at Children’s Hospital Los Angeles, each day watching two very large bags of poison slowly enter his bloodstream. The stuff made him very sick, so the infusion-center nurses had to give him pre-meds to keep the nausea and possibly ugly side effects at bay. The chemicals in the bags were designed to shrink the tumor, and MRIs over the following months proved they were doing their job. He’d be nauseous on the way home each evening, sometimes throwing up along the freeway, and every day thereafter during the three weeks between treatments. He lost his hair, lost his energy, and felt crappy and hollow the whole time. How he went to school and played on the varsity baseball team, I haven’t a clue. I knew he was tough because of football, but the way he handled the pain and nausea and continued to go to class… We just couldn’t believe it.


After chemo, Alex underwent targeted radiation treatments on a daily basis, also at Children’s, for an entire month. These were designed to kill any living cells in the now-shrunken tumor and hopefully render it a dead husk once they were finished. They also made him nauseous and weak. But he soldiered through it and was even able to work out with the football team during the summer of 2014 to be with his buddies and get back into some sort of shape. He couldn’t play, but being with the guys was a good balm for his roughed up-psyche and weakened body. “I’m bummed I can’t play,” he told me, “but being with the team helped a lot.”

And so far at least, it’s worked as planned. Alex’s quarterly MRIs have all been negative, which means the leftover, 7mm chunk of cancer mass hasn’t changed shape in the year since radiation ended. Which means it’s almost certainly a dead husk and unlikely to return. Alex graduated from high school on time in June of 2015 and is now contemplating his future and aggravating us on a daily basis, as all 19-year-olds are wont to do. To say we are happy and hopeful about things would be a grand understatement.


Meanwhile, the Ride For Kids events keep on rolling, and my wife and I, having been on the other side of the fence, so to speak, have even more respect for what these folks do. The Pediatric Brain Tumor Foundation, with help from motorcyclists across the country, has raised more than $70 million for research over the past 20-some years and helped nearly 30,000 afflicted children and their families. These people, foundation employees, and motorcyclists across the country are miracle workers too. That list includes Mike and Dianne Traynor. Sadly, both are gone now, Mike passing in 2009 and Dianne in 2012. They were posthumously inducted into the AMA Motorcycle Hall of Fame in 2013.

Susie, now a vice president at American Honda, has gotten even more of Honda’s marketing and financial might behind the RFK project and was asked last year to join the foundation’s board of directors. “It’s the least I can do,” she says. “It’s just so heartening to be able to help these kids and their families.”

Helping kids and families dealing with childhood brain tumors is what the PBTF does. It’s what the medical community does. And it’s what you can do, too, by getting involved in a Ride For Kids event near you. Click on curethekids.org or rideforkids.org for more information and to see when a Ride For Kids event is due in a town near you.




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