Nickname’s Out Living It Journey

In April, 2007, Nick was a handsome, intelligent, witty and too charming for his own good kid. He was two months away from graduating high school with honors, enrolled in the Army National Guard and accepted at the University of Utah when he was diagnosed with stage four Alveolar Rhabdomyosarcoma in his right sinus. He approached it as any 18-year old would – the “bring it on” and “Cowboy Up” attitude. I approached it as any mother would – cursing and sobbing in the shower.  He never, ever discussed statistics during his treatment, though I was told privately his chances of surviving were less than 10%.  Instead, he and his friends would marvel while looking at his brain MRI results, thinking it confirmed just how uneducated they thought Nick was! These same friends spent countless hours with him at the hospital during the long nights; they laughed, they cried, they were there.

He finished up his first year of excruciating treatment (6’3” weighing 125 lbs) and was considered no evidence of disease (NED). Soon after, I was given a link to this cool website for young adult cancer programs  called First Descents.  I relayed the information to Nick and next thing I knew, he was on a flight to Kalispell, Montana.  One week later, in July, 2008, a vibrant and enthusiastic young man came home.  Something was different. He was strong, relaxed, hopeful, and he LOVED his nickname, “Nickname”. He found a new type of healing in God’s playground – on the river, the rocks, and the trails. 

It was on this FD trip that he first met Brad Ludden and Corey Nielson. Their genuine interest in him as a person, not a cancer victim, is what solidified their friendship. At the same time, the physical challenge of kayaking cleared his chemo-fogged mind, and having a community of other young adults dealing with cancer and sharing their stories was surprisingly refreshing. The environment allowed him the space to be completely open and vulnerable, while finding his strength and humor again.  

When he came home, Nick told stories for hours of his experiences at his first program, smiling and animated throughout the entire time.  He finished up by saying, “Mom, we have to do something to raise money for FD; more young people like me need to have this opportunity!”  After some clever brainstorming, Nick’s idea for Wacky Warriors was born. WACKY stands for Warriors Against Cancer in Kids & Young-adults.

Nick had three goals for Wacky:

1.  Give back by paying it forward with gratitude.  He knew how powerful having a good attitude could have on health.  He never complained.  I did, but not Nick.
2.  Always have something to look forward to. Always. 
3. Have fun!  

With this philosophy in mind, Nick began developing Wacky Warriors, and staying connected to FD. His relationship with Brad also continued to grow, even when Nick’s cancer returned and his condition began to worsen. Brad took Nick under his wing for some more adventures outside FD. Nick could barely contain his excitement for being included with the “cool guys”, even though he was certain his end was imminent on one particular kayaking trip…  Nick respected and admired Brad tremendously. Brad took on the role of Nick’s big brother, opening up Nick’s eyes to the majestic adventures Mother Nature has to offer, reminding him just how fun life is while minimizing cancer’s grip on his body.  And Nick never got tired of ribbing Brad about his Bachelor of the Year award.  Never.  (*I’m including this because Nick told me to.)

Then, something very interesting happened in January, 2010. Nick’s scans were clear, but he decided to stop additional chemo. It was just too hard on him.  He went ahead with a clinical trial and when I asked him why, he said, “Because I want to have one more good summer. I’ve got to make sure I get out on an FD program again.”  That summer, he attended his third program.  It was another “best week ever,” although he knew he had relapsed again on his last day there. His doctors scheduled his new treatment plan to help him get through the next few months and he used every ounce of resilience left in him to make it to his fourth FD adventure, a week of climbing,  in April, 2011.  With critically low platelets, unstable white and red cell counts and fatigue that was off the charts, he wouldn’t be deterred. He embraced his last adventure and died peacefully 6 weeks later, his kayak paddle and 4 baci bracelets laid to rest with him.  

I completely and totally believe those weeks with First Descents added both quality and quantity to his life. FD was so impactful to his life that his gravestone is engraved with a kayaker on the water. Brad and Corey spoke at Nick’s funeral, and I know they  moved heaven and earth to be there that day, as it was right in the middle of peak programs season for First Descents. This mama could not be more proud of them, and I’m forever grateful for their love.

My husband Lee and I had the opportunity to volunteer with FD the year after Nick died. It was the same climbing program that  Nick had attended the previous April.   On the last night of the week, (Nick’s actual angelversary) we were preparing to light our candles to place in a pool of  water – a longstanding FD tradition. Suddenly, the song, “When I Die Young” began to play and I started to shake and the tears streamed. I turned to leave but Lee turned me around and helped me place my candles in the water. The circle of my new “kids”, FD staff and climbing guides surrounded me with their protective and healing love to help ease the grief of my broken heart – they literally held me up. It is one of the most beautiful memories of my life. 

Later on, Lee and I volunteered  at another First Descents rock climbing program. We are very close with the participants from those programs; we call them our FD “kids.” We think it’s because we’ve been through the worst, so no conversation is off limits. We don’t chase them around with a thermometer to see if they have a fever (I may or may not have done that with Nick), and we don’t cry if they talk about their mortality.  Being an FD “parent” has allowed me to find my own healing. I observe in awe and admiration at the strength and tenacity these young adults bring to life. We have grown to love them fiercely and mourn openly when one earns their angel wings.

In the end, Nick, Brad and FD have shown us how amazingly wonderful it is to be right in the middle of a cancer journey.  They’ve shown Lee and I how to navigate through the hard and scary parts, and to embrace the joyful and beautiful parts. When given the opportunity, our FD community is more than willing to show up and lift us up. They’ve shown us how to ask the right questions, how to be vulnerable, how to help. They’ve shown us unconditional love.

We are extremely proud of Brad and his First Descents family. As parents, we are so grateful for Brad sharing with our son his kindness, his time and his example on how to be a good man. As FD “parents”, we are so grateful for First Descents’ vision, and for creating an environment where those who have forgotten how, or were too afraid to live, can learn to thrive again. As individuals, we are so grateful for all of those that have supported Brad and the First Descents community. Most of all, we are grateful  that you are all our family.

I would like to close with Nick’s own words written in his personal journal after his first FD adventure :

“Tonight is my last night staying at First Descents.  It has been the best week of my life.  I have learned so much and gained so much from this experience.  Today I did my first roll on moving water.  It felt so good…

After this camp, I feel like I know more about myself and what I should be doing.  I also feel how my attitude should be towards others and I now know that I need to spread the word of this place and to raise money for them.

Love, Nickname”