Hey Marcus and Rut; I was wondering if you’re looking for more guys to talk to. One big part of my life is working with pediatric oncology patients, their never quit mindset is boggling in and of itself, but one sticks out in particular, a father that gave up so much to save his little girl. I figured I’d see if you guys are interested in talking with a friend of mine, Andy Woods. I work with a local charity here in Bozeman, MT; Eagle Mount, which specializes in therapeutic recreation. Specifically, I volunteer as the camp nurse for their pediatric oncology camps, one is for 5-10 year old survivors/patients, we bring a nurse and doctor along out into the woods and let the kids get a taste of the mountain air. A lot of these kids haven’t seen much more than a hospital room, let alone the beauty of the mountains in Montana. The other group that I work with is 16-22 year old survivors that are out of treatment. We take them on extended trips into the woods.
Anyway, Andy is a father of a couple of adorable little girls, one of whom is a fighter and has been beating the shit out of her Wilm’s tumor. He quit his successful construction business in order to care for his little girl and has been redirected into cancer research and treatment as a new career. When we ask what does being a man mean to you, I look to Andy. He gave it all up to take care of his family. He truly is a role model that I look up to. I’ll leave his story in his own words here:
This thing we call life is a strange and wonderful thing. I am continually amazed at how we all seem to have personal paths to follow, and how these paths can be so unique and varied. They can intertwine with others, and they are constantly changing. How do we know which direction to go in, or which choice to make, or how one event will lead to another? Ultimately, we don’t, we can’t. We are all just floating along on the river of life, not ever truly knowing where we will end up or how we will get there. We can make little adjustments to our path and those adjustments will affect our trajectory, but most assuredly unseen obstacles will come out of nowhere, or the river will fork, or our boat will spring a leak, or any number of un-expected things will pop up and change everything. Life is truly amazing, unpredictable, sad, happy, hard, easy, and every other adjective you can think of, all rolled into one lifetime of experience. No matter how it goes or what the outcome, it is a beautiful and wonderful thing.
When my oldest daughter, Stellablue, was 4-years-old, she was diagnosed with Wilms tumor, a childhood kidney cancer. It was a major change for all of us. We were a young family, just starting out. My wife and I were both originally from the East coast, but we had met in Bozeman, Montana, fell in love, and our personal journeys were joined together. I had started a construction company which primarily did tile and stone installations for high-end homes in Big Sky, Montana. The business was successful and seemed to grow everyday. We were able to buy our first home (a cute little log cabin in the mountains above Bozeman), and we gave birth to our second child. Our life had its struggles, but generally speaking, things were good. People would often remark, “You guys are living the dream”!
In a single, 24-hour period, everything changed. A major fork in the river that we never saw coming, which included some very rough rapids and some massive waterfalls. Like a lot of children with Wilms tumor, when Stellablue was initially diagnosed the cancer was already very advanced, and it was an emergency situation. We were given 24 hours to get to a major childhood cancer treatment center, the nearest ones to Bozeman being Denver, Salt Lake City, and Seattle. We did not know anyone in Denver or Salt Lake, but I had heard that an old college friend (whom I hadn’t spoken to in over 10 years) was living in Seattle. We rushed home from the doctor’s office, tore the house apart, threw everything we could think of in our little Honda, sent the dog and cats to stay with neighbors, and headed for Seattle. I called my friend on the way.
“Hello, Calli? This is your old friend, Woody”, I said as we were driving towards her house. “Oh my God, Woody! It has been so long. How are you?” she asked. “Well, to be honest, not so good.” I replied. I explained to her our situation; that we were rushing Stella to Seattle Children’s, that we were in fact, already on our way, and that we needed a place to stay in Seattle. Fortunately, she had a partially finished basement and an air mattress that we could use as a base as we figured out how to navigate this new direction in life.
What followed was almost 2 years of cancer treatments, and a very different life experience for our family. Our river of life had previously been pretty calm and pleasant. We had gone through some minor eddies, but nothing we couldn’t survive. This fork was anything but. We had to shutter our business overnight, and we went from “living the dream” in a little log cabin in the woods to struggling to survive in the middle of downtown Seattle. Our youngest daughter was just 10 days old when Stella was diagnosed. Our family had always been very healthy, and we had spent very little, if any, time in the hospital. No one in our family had been touched by cancer; Stellablue was the first. We had no experience with what was about to come. It was terrifying.
We arrived in Seattle at midnight, and Stella was in surgery the next morning at 7:00am. It was a 13 hour surgery where they removed a cantaloupe sized tumor, her left kidney, and her adrenal gland. We had been told that it was most likely Wilms tumor, and we clung to the hope that this was a very “treatable” form of cancer. Unfortunately, when the pathology report came back, the news was worse than expected. She was officially diagnosed with stage IV, diffuse anaplastic Wilms tumor which had metastasized to her lungs. In the Wilms-world, it was as bad as it gets, and most children in this situation do not survive. We had plunged over the waterfall, and apparently the landing was not going to be pleasant.
We spent the next 8 months in Seattle, experiencing all the glories of childhood cancer. Surgeries, chemotherapies, radiation treatments, weeks on end in the hospital, periods of hope and periods of despair. It was very rough on our family, yet Stellablue took it like a champ. She is one tough little girl, much stronger than I will ever be. Like Dory says, she just kept swimming. After 8 months of treatment, Stella was declared cancer-free, and we were able to move back home to Montana. It was a nice little calm stretch, but it wouldn’t last long, and the next waterfall made the first one look like child’s play.
We had our first set of post-treatment scans 4 months after achieving NED (no evidence of disease). The CT scan showed that the cancer was growing back in her lungs. We learned that relapse was a very bad sign, and that now her chances of surviving were even worse. I don’t think I have ever been so depressed in my life. We took our Make-A-Wish trip, which Stella loved but was horrible for us as parents. We knew why we were there.
After the trip, we started treatments again. Since the first round had not worked, the plan was to attack it as hard as we could. We would give her a massive dose of chemotherapy followed by a stem cell transplant. The idea of a stem cell transplant is to give so much chemotherapy that it essentially kills the patient (and hopefully the cancer), and then you “rescue” the patient back with a transfusion of stem cells. As a parent, you essentially sign off on a death sentence for your child, and hope that they can be rescued back. We knew this was our only chance, and that we had to move forward. Over the waterfall we went.
You can’t imagine the effects of this treatment, and I will spare you the gory details. To make the situation even worse, we were told that the treatment was highly unlikely to work, and that if it failed, we were out of options. We would be sent home to die. As a parent, this is an awfully hard pill to swallow, and I for one could not accept it. Surely there was a way to make a difference, to provide more hope, and I decided I was going to attempt to figure it out. I had no idea how, but I was certainly going to try, and I was going to get to work immediately. My first thought was that I had to really understand the disease well, that I almost had to become an oncologist, but I did not have the time to go back to school. TGFG (Thank Goodness For Google). My second thought was that clearly these older, standard treatment protocols did not work for kiddos like my daughter, and that I had to somehow find promising new research and treatment strategies and then attempt to push them into the clinic. Hello internet and Google-Scholar.
I should stop here and let you know that Stellablue is fine. Amazingly, she made it. She is 4 years cancer-free now, and a happy little girl who is very mature for her age, suffers from several treatment-related side effects, and has a smile that can light up a room. Her voice will melt your heart. The experience has scarred and changed all of us, but Stella is doing well, and turning into an amazing young woman. Our river of life has calmed significantly, and I can see her slowly starting out on her own, exciting path and journey down her personal river. It won’t always be easy for her, but she has developed good navigation skills.
As for me, I’m still running the rapids. I have not let my guard down. To this day I continue to work tirelessly for children with cancer. I have helped many children and families experiencing childhood cancer. I can be a mentor, an advocate, a researcher, and a friend who has been there. I won’t stop until we find a cure. I will do anything and everything to provide more-promising options to children with cancer. I have discovered preclinical research and pushed it into clinical trial settings. I have advocated for the NCI to increase its budget for children with cancer. I have helped to find ways to incentivize pharmaceutical companies to invest in children. I talk incessantly about childhood cancer to anyone and everyone who will listen in an effort to bring about more awareness. I think that sometimes my wife wants to kill me, or at least slap some duct tape over my mouth, but she knows I would just rip it off and start talking about cancer again. There’s not much she, or I, or anyone can do about it. I am obsessed. Someday, I will be able to quietly, peacefully float down the river again, but that day won’t come until we find a cure for childhood cancer.
Recently, I have taken a different sort of plunge although, for me at least, the water is still pretty rough. I was lucky enough to meet Dr. Charles Keller of The Children’s Cancer Therapy Development Institute in Portland, Oregon. I shared with him our experience with childhood cancer, some of my accomplishments, and expressed my interest in discovering new and more-promising research and treatments for children with cancer. I asked him if he would help me move into cancer research as a full time career. He very generously agreed to help, and he has been my mentor as I have worked through an internship in his lab. While I still have much to do and learn, I now work full time at cc-TDI, leading their study which focuses on anaplastic Wilms tumor. My family is in the process of moving to Portland permanently so that I can continue working in the lab. It is yet another fork in the river of life which I never would have seen coming 12 years ago when I first met my wife at a music festival.
Life certainly works in mysterious ways; you just never really know how it will go or where you will end up. Not a day goes by where I don’t wonder about our path, my personal journey into cancer research, and what the future will hold for our family. To quote the author of Stellablue’s namesake, Mr. Jerry Garcia, “What a long strange trip it’s been”. I’d like to say I wouldn’t change a thing, but truth be told, I would change it in a heartbeat if I could. I would love to remove cancer from our family’s experience, but I can’t. All I can do is carry on down the river, and continue to try to make a significant difference for children with cancer.
Whenever you think you’re tough, go to a pediatric oncology unit. The fight and the love for life that these kids have is mind blowing. And while it’s rough when things don’t go well, the highs are definitely worth the lows. I was a burned out nurse/emt, I was so jaded and full of hate for mankind, working with them every summer has renewed my faith in humanity.