Kevin was a very typical boy, who could be heard long before he was seen. He was constantly imitating noises, from cars and truck sounds, to characters in Star Wars, Cars, or other favorite TV shows and movies. He also rarely sat still, and if he was moving, he was running. He loved playing with cars, trucks, riding his bike, and playing baseball and soccer. Kevin was also the rule follower in the family, and would point out when others weren’t following the rules “They aren’t holding hands in the parking lot,” “You’re not allowed to do that,” etc.
Things changed just before Christmas in 2009. Kevin was almost 3 years old, and we were installing wood floors in my mother-in-law’s house. Kevin spent one afternoon sitting on the couch, and not really moving around. This was highly unusual, but since there was snow on the ground, we thought he might have slipped on some ice, or had some growing pains. This went on for a couple of days, and eventually Kelly took him to the doctor. After an exam, the doctor thought it could be juvenile rheumatoid arthritis. We were concerned, but planned to do everything the doctor recommended. After a couple of weeks, Kevin still wasn’t feeling great, and the doctor decided to run some more tests. Eventually asking us to see an oncologist, as they were thinking it looked more like Leukemia.
This diagnosis shook us, to say the least, but we tried to make sense of it and realized the chances of survival were decent. A short time later, however, they ran further tests, which clearly showed a large tumor the size of a softball near his right kidney, as well as tumor material spread throughout his bone marrow. The doctors now had a new diagnosis, Stage IV neuroblastoma cancer. This confused and scared us, as the numbers (approximately 33% survival rate) were not in his favor. We were confident, however, that Kevin would beat the odds.
Almost immediately, he began chemotherapy at Bronson’s Children’s Hospital in Kalamazoo, MI (approximately 30 minutes East of our house). It was a strange sensation to watch them pump our little guy full of toxic chemicals, and we often wondered if we were doing the right thing. With just about every round of chemo, Kevin needed blood and platelets, so Kelly and I began donating blood, and I began donating platelets. Even though I knew my blood wasn’t directly going to him, it helped me think I was “doing something” to help him. We began hosting blood drives as a family, and were amazed at the turnout (at the beginning) of family/friends willing to roll up their sleeve.
After the first four rounds of chemo, they performed surgery, and removed the main tumor. I asked to see it, and they brought it out in a 5 gallon bucket. I cursed at the tumor, the doctor laughed, and Kevin seemed to be responding very well to the treatment. He then also began radiation, and at some point we went to the University of Michigan Children’s Hospital in Ann Arbor, MI for further treatments. Eventually, Kevin finished 6 rounds of chemo, radiation, MIBG therapy, and a stem cell transplant. After a grueling series of treatments, we were told Kevin was NED (no evidence of disease). This was fantastic news, but we also knew neuroblastoma was a truly difficult cancer to ever “beat.”
This period of time lasted 10 months, during which he was still required to go in for testing, scans, blood work, and we were always on edge. After one of these check-ups we were told the cancer was back. This time there was a small tumor on his ribs, approximately the size of “half of a pea.” This was terrifying, as we were told early on the survival rate if the cancer came back were approximately 1/9. Still, Kevin was a warrior, and always said he would fight, no matter how bad some of the medicine made him feel. Kevin began treatments again, and it seemed his body was responding well to the different chemo. One of the traits of neuroblastoma is its ability to adapt to fight through chemotherapy, and to build resistance to it. This is why treatments have to consist of different versions of chemo, as hitting the cancer with the same chemo over and over is shown to not be effective. A side effect of this is, eventually the doctors will run out of treatment options.
Kevin was able to beat the cancer a second time, and went back into the routine of scans, blood work, and further tests. During one of those tests, the doctors saw more growth, and this time it came back extremely aggressively. We were devastated as a family, but thought Kevin would be able to beat the cancer again. Very early on in the treatments for the third battle, it became clear the cancer was simply too strong. We tried a couple of different experimental drugs, but they were not effective. After a few rounds of treatments, we made the decision to make Kevin as comfortable as possible, as it was clear the cancer would not be defeated.
Kevin passed away in our arms on October 1st, 2013, and our world changed forever.
In the aftermath, we became even more involved in the pediatric cancer world. CureSearch became one of the organizations we continued to support, because it focuses entirely on kids fighting cancer. We remained hopeful that Kevin’s cancer, and his particular strand of neuroblastoma, could help researchers and doctors in the creation of new and effective treatments. This was important to us, as we simply couldn’t bear the thought of his death being in vain. One of the problems with pediatric cancer is the lack of funding for developing new treatments. Kevin had some chemo that is more than 30 years old, as there simply aren’t enough treatment options available. We realize this is a complicated issue, as the pharmaceutical companies aren’t going to throw resources behind treatment they can’t make money on, but there has to be a better way. We are hopeful with private funding, organizations like CureSearch can come up with less toxic treatments that can pinpoint the cancer, treat it effectively, and minimize some of the incredibly harsh side effects of so many of these medicines. Too often, if kids are able to beat their cancer, they are left with a multitude of other serious health conditions including heart problems, kidney problems, hearing loss, sterility, and many others.
Kevin taught us so much, from his never-ending will to fight, to his uncanny ability to see the small moments in life. We would often find ourselves walking ahead of him, to turn around thinking he was right behind us, but would find him bent over looking at a bug on the ground, or smelling and examining a flower. He could appreciate things on a level different than ours, and showed incredible resiliency in his attitude. He loved playing baseball, and ended up playing a couple of innings on his T-ball team during a game, before realizing his port was still accessed (the needle from the procedure was still sticking out of his chest). Kevin just wanted to be a “normal” kid, and tried everything he could to make us laugh, often telling jokes that had no punchline, or making silly faces/noises. He was an incredible kid, and we will forever be grateful for the 6 years we had with him.
We also had a bit of an adventure in his name, where I tried to ride my bicycle on Route 66 from Chicago to Santa Monica, CA, as a fundraiser for CureSearch and DC Strong. For further information on the ride, please visit: www.ride2endpc.com (ride to end pediatric cancer).
Mark and Kelly Linder