I was feeling sick all week. I was not just a little sick, I knew I was really sick. I could feel it. It became unbearable after about three days of not being able to eat. So, I told my parents and we decided that I should go to the doctor to see what type of virus I had.
We went and had a pretty normal appointment. The doctor said that I probably had mono and he decided to perform a blood test to see if that was the case. He told me he would call me and tell me what the results were a little later, so we went home and then a few hours later my dad got a call.
It was not a normal call and I could tell that something was wrong. It was the doctor and he told my dad that I would need to pack a suitcase for a few days. Being as young as I was, just 13, I didn’t really understand what that meant. All I knew was that I was going to the hospital to stay for a few days.
I remember seeing a bunch of sick kids when we got there. I looked around and saw pale, coughing, ill kids all around the hospital. There were parents with the saddest, most unbearable looks on their faces. The combination of love and fear was just too much for them to hide. And, there was me, with my own look of confusion walking about and wondering why I was there. Did I have cancer? Why are any of us there? Why did I have cancer?
That day I was then told by the nurse that I probably had leukemia. I was shocked. Like any 13-year-old, I was in pure denial. I didn’t believe her. I didn’t want to to believe her. Naturally, I was a little bit scared. I finally came to terms with it and then my only question was if I was going to survive.
Once I was assured that I would survive, that I would make it, then I wondered how long it would take. When she told me, I had an uncontrollable outburst of tears roll down my face. It was like a waterfall had broken loose and every emotion came out at once. I wondered why my parents did not tell me that is what they thought it was. I was genuinely angry towards them for not telling me earlier. I fell into a state of denial and kept telling myself, “cancer is for old people, not for kids like me.”
Those feelings and emotions consumed me that first night. It was a fast-moving roller coaster with plenty of twists and turns that made my head and stomach spin. I didn’t get a lot of sleep that night.
However, by the next day I was ready to fight. I was ready to go to war against this thing that had invaded my body. I wasn’t going to go quietly into that good night as a certain Welsh poet once suggested in my English lit class. Not this kid. Overnight I went from being a kid with normal kid problems to being a kid with one very real adult problem that I was going to beat.
It wasn’t long before I began to tell the people in my life what was happening. I started with my two closest friends, Jacob Allard and Zach Bulleit. They were amazing and wanted to give me the support that would really make a difference. I related it to my friends as, “Colts strong,” and when they asked what that meant, I told them I had Leukemia. They instantly understood what I meant by Colts strong; I had the same thing as Colts head coach Chuck Pagano.
And, boy, did they support me! They started a Facebook page that quickly grew to a quarter of a million fans. The support and encouragement that flowed in was outstanding and completely surprised me. It started with everyone from my school, then to the people in the community, and then eventually, the Facebook page went viral around the world.
It wasn’t long before people from all four corners of the globe were giving me their well-wishes and prayers. They also donated money to help with all the costs and expenses my family and I were going through. News stations wanted interviews. The New England Patriots sent me gifts. Eventually, the folks from Make-A-Wish let me meet the whole team and spend some personal time with my favorite players, Tom Brady and pro tight end Rob Gronkowski. I was even able to meet the owner of the Patriots, Robert Kraft, along with many other fantastic players and members of the team. The feeling of this page as it grew and these experiences started to happen was just unbelievable. Even though I was sick, I was happy and the feeling of support was just absolutely incredible.
Once the doctors had their tests and data to look at, they began the chemo. They knew what to treat and how. We developed a plan, and started moving forward. My first chemo absolutely wrecked me. It made my body have a reaction I’ll never forget. My body shook uncontrollably. It was awful. Fortunately, they were able to stop it by giving me Benadryl.
I remember the doctors hooking up a syringe to the port which had been placed in my chest just days earlier. I remember feeling strange as they slowly injected the chemo into my bloodstream. It was an awful feeling and my body began to shake violently and I became very cold. I voiced my concerns and the doctors began throwing blankets all over me. The room was comfortably warm, but I felt like an Eskimo who’d left the house without his jacket. Standing beside me and holding my hands were my parents who were freaking out because they didn’t know what to do. I could see the anguish in their faces as they wanted to help but weren’t sure how.
Months like this passed and went by as the treatment progressed. Gradually, it started to feel normal even though there were still a lot of very boring hospital visits and times when I wasn’t eating and not getting out of bed. My strength was very low as I went from treatment to treatment. I got very sick at times. I was only able to go home for about 5 days a month during these long 6 months of treatment that I had to endure. But, eventually, we could see the light at the end of the tunnel getting closer and closer.
I started to feel my strength return. I could feel the treatments working. I started to feel like a normal kid again. Many nights I would just think of all the stuff I was going to do when I got out. Indeed, I felt like a prisoner, but when I got out, I knew I was going to get a swimming pool, convince my parents to get me a dog. But, mostly I just wanted to hang out with my friends on a regular basis doing normal things that didn’t involve hospital visits. That was what I thought about each and every time we did a treatment.
About 6 months after my diagnosis, I was told the treatment was done and that I could finally go home. I would have to have weekly check ups and the ever popular blood tests, but I could go home. It was such a strange and empowering feeling knowing that I’d made it.
The hospital threw a party for me on my discharge day. It was one of the greatest moments of my life. My best friends were there and so were some of my family. All of my favorite nurses were there. There was Jacob, a lifetime friend and a founder of the Isaac Strong Facebook page that gave me so much strength and support. There was Tommy Peterson, my friend since the very beginning of my life. We’ve known each other since we were old enough to talk. And, there was Austin Moore, my cousin who I have been close to all my life; we are best friends by both blood and bond. And, of course, the doctors and nurses who had been with me through the entire thing stood there beside my great aunt and uncle, Jon and Lana Barclay.
But, not every story ends with a wonderful discharge day like I had. Not every kid gets to be discharged. Some kids don’t make it that is the harsh and tragic reality of a cancer diagnosis.
I had a friend in the hospital named Justin. We became best friends while we were there and we would stay up late eating food we weren’t supposed to. We loved to get together and have someone bring Hooters hot wings to us. We may have had cancer, but a good hot wing is something that no one should ever be denied.
The hospital also had a McDonald’s that my dad stopped by frequently to get us ice cream at 12 in the morning. I remember one time we had an Assistant Nurse who was checking our temperatures often, something like every 4 hours. Justin and I had some ice cream stashed and we would eat some just before she came in. Needless to say, her temperature readings weren’t very accurate that night.
Justin came to the hospital not long after I did. He had high-risk leukemia, where I had low-risk leukemia. His diagnosis meant that he had to have a bone marrow transplant. It didn’t take and eventually his cancer came back. In the hospital, all of us kids knew how serious his cancer was and we rallied around him as best we could.
As hard as they tried, there was nothing the doctors and nurses could do for Justin. His body just wasn’t responding to the treatments. However, that didn’t slow him down a bit and he was always in good spirits. Nothing could get him down, not even a bone marrow transplant. He was always confident and a beacon of hope to the rest of us kids in the hospital. He’d always say, “I’m going to get out of here. I’m going to make it.”
I continued to visit Justin, but it felt awkward getting healthier and coming to visit him as he got sicker. As hard as he fought, it became clear that this was one battle he wasn’t going to win. It was hard coming to the realization that the late night talks we had about getting out of the hospital, about the stuff we would do when we got out, about all the dinners and dates we wanted to experience were slipping away.
Justin died on January 10, 2014. I found out in a bitter way that I’ll never forget. I noticed that he had deleted all of his facebook friends. I thought it was odd, so trying to find some more information about what was going on, I looked at some of our friend’s Facebook pages who had family connections to him. They had said Justin fought to the very last breath. That was the last I heard before I did a Google search on his name and discovered his obituary in the paper. In my heart I know that I’ll always miss my friend, and I just hope he knew how much his friendship meant to me as we fought our battles side by side.
Today, the Isaac Strong page helps raise money for childhood cancer with the Be Brave Foundation which is run by Jeremy Chambers to help his son Joshua and the many other children facing cancer. We are currently running a childhood cancer fundraiser using college football as a way to get people to back their favorite university’s between the two schools. I support Michigan, and Jeremy and Joshua support Ohio State University.
Unfortunately, I am down a little bit to their Ohio State following at the moment. Even so, I know we can win; we always do. And, even if I don’t this time, Joshua will, and that’s just as good, too. Because, the money we raise in our little rivalry goes to help all the other kids win their battles with the “Big C,” and if we can help them the way so many people helped us, well, then we’re all winners.
October 6, 2015 at 10:23 am
So happy your treatment is going so well. My daughter fought aa brave battle but loss. She was misdiagnosed for 10 years so was stage 4 when we first found out. God bless you and your family
October 6, 2015 at 10:45 pm
Jeanne, we’re so sorry for your loss. That’s one heck of an experience for anyone, let alone a child to go through. Sounds like she put up one brave fight. Thanks for your kind words. Isaac’s away right now, but he asked me to respond to you. He’s hoping his story and others we publish here can help inspire others going through similar experiences. God bless.