Do. Something. Great.
Hours before the early registration cutoff window, I did something great. Or maybe just something crazy. I officially registered to be a 2023 solo competitor in RAW – the Race Across the West.
Approximately the first third of the Race Across America (RAAM), RAW traverses the mountains and desert between Oceanside, CA, and Durango CO. Competitors have 92 hours to pedal 930 miles on a bicycle.
I’m doing this in partnership with Be The Match (bethematch.org), raising funds and awareness for this amazing organization. BTM makes a routine of saving lives through connecting stem-cell/bone marrow donors, and the patients who desperately need them to survive.
How did I get here?
It is Friday the 13th, January 2017. I have 72 hours left to live, and I don’t know it yet.
Until this point, I have been truly blessed in this life. I’m a Christian and an American. I was born in Annapolis, Maryland, the son of Bill and Anne - two incredible parents who moved me at age 5 to the foothills of the Virginia Blue Ridge Mountains - raising me in a loving home with my siblings Bonnie and Eric.
Growing up with a close-knit group of high school friends interested in technology, I graduated from Virginia Tech with a Computer Engineering degree in 2001 and embarked on a career in semiconductors at Texas Instruments. TI provided great opportunities – to follow my passion for creating innovative technology and to meet and work with some of the best engineers on the planet – many of whom are now close friends.
I am a husband to Julie – my best friend, inspiration, soulmate and closest teammate in life. A fellow computer engineer, the first time I laid eyes on her was in 2002 in the parking lot of a Dallas Whataburger. This Kansas blonde pulled up in a maroon T-top Camaro Z28, with a Kawasaki Ninja motorcycle trailered behind. I didn’t let her get away. 15 years later we have five beautiful and healthy children, Bonnie, Freja, Naomi, Lucas, and Elyas, ages 3 through 11.
Julie started distance running with a close friend, and I had my friend Ray take me out on a road racing bicycle and was hooked. I just completed a 100-mile gran fondo charity ride last Fall, and Julie has been training for her first ever marathon – in Houston on January 15th, 2017.
We own 29 acres of land on the outskirts of Dallas, where we started the Two Rivers Family Farm with a few Berkshire hogs and a donkey named Meryl. We are half-way through building our dream home on the farm. My career at TI is thriving, and Julie is running the farm, part-time homeschooling the kids, and anticipating her first ever marathon in Houston this coming Sunday.
Life is busy but grand. We love to face tough challenges, dream big, set huge goals, and then go try to accomplish them. We are up early, collapsing in bed late, trying to do our best to thank God for our blessings, appreciate what we have, and do what we can to help others and pay it forward.
About two weeks ago things started to go off-track. I woke up the day after New Year’s at 3am with a 102F fever. After several trips to the doctor with multiple “probably the flu or strep throat” diagnoses, Julie and I were starting to get worried. My fever had persisted for 11 days, and with Julie’s marathon coming up on Sunday, we decided to check in to the local ER and see what we could find out. We left the kids with Julie’s parents and headed to the hospital.
I’ve been subjected to a full battery of tests over the last couple of our hours – CT scans, multiple blood tests, and constant poking & prodding. Having no idea what results to expect, we are trying to get some rest in the ER room. The clock strikes 2am on Saturday the 14th, and the on-call doctor walks in.
“This is the part of my job that I don’t like,” she says. “Your white blood cell count is 15 times normal, and it’s highly likely you have cancer. Our head oncologist will be here for the morning shift in a few hours. Try to get some sleep and then you can meet with him and talk about next steps.”
Shock. Cancer. Is it serious? What type of cancer? Is this easy to treat or will I be dead next week? Tears. Should we stop building the house? What about Houston? Do we need to sell the farm? How will we tell our children? What about my career at TI? We don’t have an up-to-date Will. Despair. Do we have enough life insurance? How will Julie raise 5 kids by herself? Will I have to go to another city or country for treatment? Oh, God, please let this be an easy cancer to treat.
The sun is starting to rise on Saturday morning and the head oncologist walks in. “After reviewing the blood tests, there is a 90%+ chance that you have an aggressive and deadly blood cancer - Leukemia. We need to transfer you by ambulance immediately to Medical City Dallas, a hospital that specializes in treating Leukemia and Lymphoma.”
The Acute Myeloid Leukemia (AML) diagnosis was confirmed that day, and our world started to fall apart. This terrible disease has a ~25% survival rate, and my case was so advanced that my organs were starting to shut down and I would die within 72 hours without treatment.
At least I now had some answers as to why I had been sick for several weeks. Once I was transferred to the Leukemia ward, I was also able to quickly gain some perspective. Yes, I drew a bad lot, but I was still blessed – I was 37 years old and healthy before the AML started. I had an incredibly supportive wife, a world-class doctor and nursing staff, an army of family and friends, good health insurance and an incredibly supportive employer. My floor-mates in the hospital were men and women of every age, ethnicity, and circumstance. A pair of newborn babies moved in on one side of the hallway – one twin born with Leukemia. A 9-year old girl was admitted with both AML and ALL. The 90-year-old in the room next to mine wasn’t strong enough to withstand treatment and was being made comfortable.
I saw these people every day while picturing my wife at home trying to shoulder the burdens of the world single-parenting our 3, 5, 7, 9, and 11 year-old children. This has a way of giving a man some backbone.
The next 9 months were not fun, but I was motivated for the fight. I was diagnosed with FLT-3, a type of AML that is particularly rare and deadly, requiring more severe treatments to cure. My request to my doctor was to give me the most extreme/tough treatment that would give me the best chance to live and cure this for good.
I underwent 4 rounds of week-long chemo. During the first bout, I watched the Tour Down Under pro cycling race on my iPad in the middle of the night. The beauty of Adelaide, Australia and the performance of the cyclists was inspiring. After each round of chemo, I would struggle to get out of bed the first week. Next, I would try to walk down the block, then get back on the bike, then see how many miles I could ride before I had to go back to the hospital for the next round of chemo.
I endured severe stomach cramps causing middle-of-the-night doctor visits. I had multiple spinal taps – to inject chemo directly into my spinal fluid to bypass the blood-brain barrier and kill any mutated FLT-3 cells hiding out in my brain. After a dose of chemo one night, my heart went into a-fib, which landed me in the ICU for several days.
I received daily shots in the stomach to re-grow healthy white blood cells. This caused extreme “bone pain.” In several cases it was so bad that I had muscle spasms and couldn’t see or hear, my jaw clamped down on a towel until the pain subsided hours later. The nurses would ask what the pain was on a 1-10 scale. I decided that if I was still conscious it wasn’t a 10 – so this was a 9.
All of this led up to a full stem-cell transplant. Even with successful chemo, FLT-3 has a predisposition to return unless you fully ‘reboot’ your immune system. Through countless $Million’s in donations, decades of research, and thousands of patients before me, we can now cure this disease. All it requires is (1) surgery to install a tube through your neck directly into the heart, (2) multiple injections of a chemo derived from mustard gas (the nurse delivers it with hazmat gloves since the chemical will burn through skin), and (3) a ~1-in-10-million DNA “twin” self-less donor who agrees to donate stem cells that will grow new bone marrow and a new immune system.
Following a doctor check-up soon after being released from my stem-cell transplant, it was pouring rain in Dallas. There was a crowd in the lobby of the hospital, grumbling about the weather and not wanting to walk outside to the parking lot. I didn’t have an umbrella, and for a moment, I was grumbling with the crowd. Then I realized I was still alive. I hadn’t felt the rain on my skin in more than a year. I walked outside. Slowly. Thoroughly enjoying every measured step from the hospital lobby to my car
“When it is dark enough, you can see the stars.” – Ralph Waldo Emerson
Miracle of miracles, I’m still here today to tell the story.
Julie ran that marathon in Houston the weekend of my diagnosis, and finished in under 4 hours, crying at each mile marker when she prayed for me and our family. Since I recovered, she’s run 4 more, placing in the top 100 out of > 13,000 women in the Boston Marathon, and winning her first ‘pro money’ as a top masters finisher in the Grandma’s half-Marathon. The kids are now 9 through 16, the farm has grown to include cows and chickens, and we finished the house and moved in.
“Almost the whole world is asleep. Everybody you know. Everybody you see. Everybody you talk to. Only a few people are awake, and they live in a state of constant, total amazement.” – Patricia, Joe vs. the Volcano
Through this journey, I also learned about the Be The Match organization. This group facilitates all donor/patient matches for stem cell transplants in the U.S. They host an extensive database of the DNA information required to identify a match, coordinate with other matching databases around the world like DKMS, and provide resources & information to both donors and patients. They also advocate for the importance of getting more potential donors in the database – a simple Q-tip cheek swab is all it takes to potentially be matched to save someone’s life.
From my BTM-facilitated stem-cell transplant, I now have the XX blood of a German woman! My blood type changed from A+ to O+, and while I used to be 90% English and 10% German, I’m now 85% German.
In July, 2022 we had a truly special trip – my life-saving stem cell donor and her family made their first ever trip to the U.S. for a joint family meeting/vacation. A German woman, Andrea knew only that she was the one identified donor in the world who might be able to save a complete stranger. She didn’t hesitate to sign up and do whatever was needed to help. Losing her father to Leukemia as a teenager 36 years ago, this opportunity to help someone else might make some small good come out of their family’s tragedy. The Franks and Rembolds were instant family, and even more collateral beauty has come from this trial.
“Virtually every good thing in my life I can trace back to a misfortune, … you don’t know what’s good and what’s bad when things happen. You do not know. You have to wait to find out.” – Sebastian Junger
I can never really repay the countless people who by God’s grace sacrificed to help me diagnosis, confront, survive, and thrive through one of the deadliest known diseases. Julie, Andrea, my parents, Bonnie & Eric, our kids, Ray, my doctors, Be The Match, TI, and so many amazing friends and extended family. Other than saying “thank you,” what’s next? Did I mention that Julie and I like dreaming big and setting HUGE goals?
What if I could help others beat cancer? I continued cycling to help recover my physical health following the stem cell transplant. What if I could be even stronger after cancer than I was before? Through LLS Team in Training, I met Marc Julien, another cyclist cancer survivor who had the vision to put a team together to compete in the Race Across America (RAAM). RAAM is the world’s toughest bicycle race – 40% longer than the Tour de France, and after the start in California, the clock never stops until you reach the finish in Annapolis, Maryland.
In June 2021, our 7-man relay team won 3rd place in RAAM, crossing the entire United States on a bicycle in ~6.5 days. I am the first bone marrow transplant survivor to finish the race, and personally rode over 400 miles during my 85 relay segments. We also raised significant funds for cancer research.
I’m in awe of what God can accomplish in our world, and how life’s biggest challenges can lead to the biggest opportunities. For those of us cancer survivors who “only live twice,” life is that much more precious, and we are blessed with a special perspective.
I’m alive today in large part thanks to the Be The Match organization. In addition to finding & coordinating my match with Andrea to provide life-saving stem cells, BTM supplied extensive resources to help me understand this unique life-saving treatment. Thousands of people in the U.S. every year are given a 2nd chance at life thanks to this organization.
If I finish this non-stop 930-mile bicycle race, I’ll be the first ever stem-cell transplant Leukemia survivor to do so. Will I finish? I have no idea. But I certainly won’t DSG if I don’t try.
Please consider joining me to do something great by signing up to save a life through bethematch.org, and/or donate funds to support patients & ongoing research.