Timothy “T. rex” Hoehnke won't turn 30 until August, but he’s already battled cancer three times: leukemia, beginning at age 16; a brain tumor in 2013, and another brain tumor in 2018 that he's still fighting.

Sitting around a campfire in Baraboo with 14 other young adult cancer survivors, you would never guess Hoehnke has overcome so much adversity in his young life. He not only graduated from high school while being treated for leukemia but went on to get a degree to be an occupational therapy assistant.

Throughout the weekend Hoehnke was the first to chime in with a joke. He was quick to laugh, and he even named his Optune device, a white cap to treat the glioblastoma in his brain: Tina. When she misbehaved and started beeping, he called her Felicia.

Everyone around the campfire on that mild Friday night had their own cancer story, which came out over the course of the weekend. And while there was plenty of sadness and moments of vulnerability and tears, joy and laughter outpaced them.

This wasn't some support group with bad coffee and fold-up chairs in a hospital or church basement.

This was a trip with First Descents, a Denver-based nonprofit that takes young adults diagnosed with cancer between ages 15 and 39 on free rock climbing, kayaking and surfing adventures around the country.

First Descents' motto is a fitting play on words: Out Living It. As in outliving cancer, and out living, making the most of life, despite diagnoses.

I was one of the survivors at that campfire outside a log cabin near Devil’s Lake State Park where we would spend the next day rock climbing.

I first heard about FD after I was diagnosed with brain cancer last August, when I met another young brain cancer survivor who told me about her rock climbing trip in Colorado. It sounded awesome, but I figured I’d wait until I was done with treatment to apply.

Then FD reached out to me as a journalist and invited me to the Devil’s Lake trip. I don’t believe in coincidences, so I jumped at the chance to join.

Support for young adults

Statistically, young adults (ages 18 to 39) are less likely to get cancer than older adults. The median age for a cancer diagnosis is 66, according to the National Cancer Institute. But cancer is the leading cause of disease-related death among adolescents and young adults, which is also a life stage that comes with its own challenges — raising or wanting to start a family, climbing a career ladder. The unique social and physical needs of this age group are not always considered in medical studies or treatment plans.

First Descents founder Brad “Man Salmon” Ludden saw how young adults lack support in the cancer world when he was 12 and his aunt was diagnosed with breast cancer at age 38. An accomplished kayaker, Ludden decided to volunteer at a local pediatric oncology program by teaching kayaking. In 2001 he started First Descents.

“I wanted to re-create the experience of a ‘first descent,’ that had so greatly impacted my life, for people like my aunt who really needed it,” he says in his staff bio on the First Descents website.

In 2016 Ludden won a CNN hero award for his work with First Descents.

“It was on that stage and in that moment that I realized two things: 1) adventure can and does heal, and 2) young adults with cancer and other serious health conditions are no longer forgotten,” he wrote.

FD's main program are weeklong trips around the country. Campers stay together, eat together and adventure together, from whitewater kayaking in Oregon to rock climbing in Colorado. There are costumes, prizes and even nicknames. In 2018, FD facilitated 1,281 experiences around the country.

The trips are free to participants, paid for by FD funding that comes from individual and corporate donations and grants. Our Devil’s Lake trip was partially funded by Children’s Hospital of Wisconsin, which together with Froedtert and the Medical College of Wisconsin facilitates a young adult oncology group.

The weekend adventure was with the Milwaukee tributary – that's what FD calls its local communities that stage day or weekend trips close to home. There are 18 tribs around the country, including groups in Chicago and Minneapolis. FD started the groups to keep participants connected with other survivors when they went home from their weeklong adventures.

"It’s been interesting to see people go on the weeklong trips somewhere far away, then they know people all over the country, but then they come home and they feel isolated still. It’s been cool to see people be able to connect with each other here more,” said Marc "Lens" Korobkin, an FD alumnus who leads the Milwaukee trib and was the lead staff for the Devil's Lake trip.

The local trips are a mini version of the weeklong camps. A local staff member works with other FD personnel to arrange lodging and a local guide service for the activity. A chef plans and prepares all meals and snacks. Participants only need to get to the destination.

The trib outings are “like an adrenaline shot of FD magic," said Kaylee "Sidetrack" Hable-Guild during the Devil’s Lake trip. Hable-Guild, who was diagnosed with leukemia at age 20, went on her first FD trip in 2012.

The nicknames are part of the magic — everyone gets one, either one they give themselves or one that is bestowed upon them over the course of the trip.

When we arrived at the house in Baraboo where we’d spend the weekend together, some already had nicknames — Birdie, Fluffy, Lens, Sidetrack. Some participants had met before, on previous FD trips; some, like me, were new. But it didn’t take long to feel like we had known each other for years.

Cancer can destroy lives, but on this weekend, it was bringing survivors together for what FD calls “a life-changing outdoor adventure.”

“You don’t know you need FD until you have it,” Heather “Birdie” Koll told me shortly after I met her at her Bay View home to carpool to Baraboo. A breast cancer survivor and mother of two young girls, Koll has the kind of genuine, gregarious personality that makes you instantly like her.

And like moms always are, she was right about needing FD.

The program sounded amazing when I first heard about it, but I didn’t think I needed it. My diagnosis had changed my life, of course, but I had always felt at peace about it. I had a great support system of family and friends. My treatments were going well, and I felt good mentally and mostly good physically. I was already back to doing some of the outdoor activities I had done before I was diagnosed.

But then I met Koll and the other survivors and instantly felt a connection I didn’t know I had been missing.

“It’s about community,” Korobkin said around the campfire that first night.

He threw out a question that people were free to answer or not: Why had we come on this trip?

Answers varied but revolved around finding a community and challenging oneself. For me, it was about proving that the carefree rock-climber I was before cancer was still in there somewhere.

Climbing above cancer

The next day, I’d see that all come to fruition.

The weather was perfect: mostly sunny and in the mid-70s, with a slight breeze that kept the bugs away — the opposite of the rain that had been in the forecast a couple days before.

We hiked half a mile up the 300-foot West Bluff at Devil’s Lake to Misery Rocks, where our guides from Devils Lake Climbing Guides had set up five routes for us to climb.

I watched and cheered as people overcame fears, doubts, pain and physical limitations.

Stephanie “Eleven” Taylor, a 24-year-old Ewing's sarcoma survivor, spent 45 minutes working her way up a tough route she didn’t think she could climb, with Koll coaching and encouraging her from below. Fittingly, Koll would win the biggest cheerleader award at the end of the weekend.

With Tina the Optune device on a break at the cabin, Hoehnke strapped an orange helmet over his head and started up a route with his red T. rex chalk bag hanging behind him. Despite three brain surgeries, two hip replacements, countless rounds of chemo and other procedures, he was doing it.

I shook off my own fears and looped a rope through my harness, tying the once-familiar figure-eight follow-through knot to secure it. I reached into my chalk bag to add some to my hands while taking a deep breath.

“On belay?” I said to Sarah “Coco” Geers, our lead guide who replied with “belay is on” to confirm she was clipped in to the other end of the rope.

“Climbing?” I asked as permission to start up the rock.

“Climb on,” she replied after tightening the slack in the rope.

Climb on I did, feeling the familiar mix of excitement and fear as I moved up the rock, reaching for ledges and tiny bumps with my fingers and toes.

“Yeah, Stubbs!” someone cheered from below. My nickname, Stubbs, was an old one from a backpacking trip that I had chosen for FD, too. I’m prone to stubbing my toes when I hike, and the trek up the bluff was no exception.

When I reached the top of the route, I heard a smattering of cheers from other survivors below.

Nobody left behind

We had different stories and were in different stages of survival: some 10 years out from treatment but still living with its effects and the anxiety of wondering if the cancer will come back, some fresh off treatment, others actively on it.

But on that bluff we were challenging ourselves and each other, whether that was doing the tough hike up the bluff or rock climbing for the first time.

For some, the challenge was simply coming on the trip. It can be scary to join a group of strangers for a weekend, talking about an awful time in our lives and doing something physically challenging and frightening in itself.

But once you take that first step, someone at FD will run down the hill to meet you and walk with you the rest of the way.

For me, that was Koll. When I joined the trip, Korobkin had encouraged me to join a carpool, noting many participants find that to be a good time to connect with survivors before meeting the larger group.

He was right, and Koll came running down that hill to warmly welcome me into the FD family.

Sometimes someone would literally walk with you the rest of the way. FD tailors its programs to various abilities and stresses that nobody gets left behind, whether that's hiking up the bluff together or cramming 15 people around a dinner table that’s probably meant for half that many.

“A big part is making sure whatever we do doesn’t feel cliquey, and that can be really hard in some groups, and I try really hard to make everyone feel included," Korobkin said.

He’s doing a good job. Numerous people on the trip credited him with making the Milwaukee trib what it is — a strong, growing group of young adult cancer survivors who gather officially and unofficially for outdoor adventures in the Midwest.

Out living it

Around the campfire on our final night in Baraboo, our leaders gave out a few goofy awards — pom-poms for our cheerleader, Birdie; a purple dinosaur mask for our comedian, T. rex.

Hoehnke has always been the class clown. A 2006 Journal Sentinel article about his leukemia diagnosis before his senior year at Rufus King High School called him the “unofficial team prankster” of his cross-country team, for which he was a captain.

Hoehnke told me his nurses called him the “cancer comedian," and humor is a way to help himself and those around him, including his parents, get through everything.

“It’s a way of letting them know I’m OK," he said.

But he doesn't hide the pain that comes with cancer. On his blog after the trip, Hoehnke reflected on how his two hip replacements made hiking and climbing difficult.

"I felt so defeated and mad that I couldn’t do these things," he wrote. "Even with the fact that the hike was so hard for me. I gave myself some time to be frustrated and pissed. Pissed that cancer took this from me."

Hoehnke's words reflected the pain that simmered below the surface for everyone on the trip.

But the pain wasn't what this was about. We get enough of that in hospitals and with family, friends and even strangers. For one weekend, the magic was doing something outside all of that, but with people who understand it as only other cancer survivors can. Despite losing hair and organs and spending countless hours in hospitals, for one weekend we could do something that made us feel like we weren't just surviving, but actually living.

The wise cancer comedian recognized that magic as well, writing:

"Then I got to thinking about it in a better way. Cancer didn’t take these things from me, all cancer did was make me change the way I have to do things. Cancer just makes me have to work a little harder to do these things, but I still did them. Even with the struggle. I accomplished them. All with having an amazing group of fellow cancer survivors that were probably facing their own challenges during this time. We all encouraged each other to push harder and to BELIEVE in ourselves. To believe that we CAN do it.”

More information: First Descents programs are open to people who were diagnosed with cancer after age 15. Participants must be 18 years old, and the nonprofit extended its age range to 45 to include those diagnosed in their later young adult years. Participants must submit a medical review through their physician, but they can be (and some are) going through treatment.

Programs are free to participants and include all lodging, meals and guide services. Travel to the program location is not included, but there are scholarship opportunities.

Groups are limited to 12 to 15 people, and activities are tailored to abilities.

Trained medical professionals are present for each of the programs, which are held close to medical facilities.

Last August, FD added programs for young adults living with multiple sclerosis. They now offer multiple weeklong trips for MS participants.

FD also offers international trips, FDX, for alumni who have done a weeklong trip, and FDrock trips, which are for caregivers who are nominated by FD alumni.

For more information, see firstdescents.org.

Contact Chelsey Lewis at (414) 224-2144 or clewis@journalsentinel.com. Follow her on Twitter at @chelseylew and @TravelMJS and Facebook at Journal Sentinel Travel.