In part 2 of our 4-part series in honor of National Childhood Cancer month, one young man tells his story of survival.

When I was diagnosed with cancer, I was literally taken out of the world I knew and suddenly surrounded by sights and sounds and smells that I had never experienced. Like so many other childhood cancer patients, my diagnosis was a total shock.

I was a freshman in high school and playing on the tennis team. So, during spring break in Florida, my Mom and I practiced every day. After a few days, my Mom sensed that something was wrong. I knew I had been tired and not very hungry and that I had a slight cough, but that didn't seem reason enough to go to my pediatrician on the last day of spring break. But Mom insisted, and we went on Friday afternoon. Among other things, my doctor noticed that I had developed a heart murmur, so an appointment was made for an echocardiogram the following week. I went to school that Monday, carrying my tennis racket, expecting to go to practice after the doctor's visit. However, the results of the echo changed everything.

During the echo, the first nurse couldn't find what she was looking for, so she called a second nurse who also moved the wand around the left side of my chest. When they asked the doctor to come in, he checked my back and the right side of my chest before saying, "Ah… there it is."

I thought he had found the murmur and I relaxed, but what I found out later was that they were having trouble finding my heart because there was a mass that was so large it had moved my heart to the right side of my chest. From there I endured countless tests and procedures over the next two days, the longest of my life, until the final diagnosis came on Wednesday night: an advanced stage of non-Hodgkin’s b-cell lymphoma.

Monday morning I was a regular kid on my way to school and by Thursday morning I was having my first round of chemo. A few days before, I was a healthy kid with a cough. Now I had cancer. I went from playing football with my friends at lunch to statistically facing death, in three days. I've heard it happens like this for lots of kids. They may have a pain in their leg or just feel really tired and suddenly tests show that they have cancer.

That first Wednesday night, when I learned I had cancer and what my treatment would be, the only way I knew how to react to this overwhelming news was to decide that there was absolutely no way I was going to lose this battle. So, I did everything my doctors and nurses told me to do: I cleaned my catheter every day, I tried to relax when my newly trained Mom gave me shots every day, and I tried to eat, although not every day and not until a feeding tube was described as the next option. I wasn't brave (after all, up until then I hated having my finger pricked during my annual exams) but I also wasn't scared. I wasn't scared because everywhere I went I had people at the hospital watching over me.

My treatment roadmap consisted of six rounds of high dose chemo, so for each round, I was in the hospital for six to ten days and then at home in between for about three weeks, to let my counts recover. At that time my family was focused on getting through each day. We knew that the drugs were toxic, but we also knew that it was my only option. There were many areas of my life where I no longer had options.

For example, I couldn't go to school and I couldn't see my friends. But, and this is a very important "but," my doctors and nurses always tried to give me choices, even if it was only the choice to take my medicine in liquid or pill form, or which arm to get a shot, or whether to be asleep or awake during a spinal. By letting me know I still had choices, I realized that I could also choose my attitude. So, when I was wheeled into surgery, I chose to have a smile on my face. I wanted to be the kid in the hospital that doctors looked forward to seeing in the morning. I wanted to be the kid that the nurses enjoyed spending time with when they changed my IV. I just wanted to make the best of the experience that had been dealt to me.

And I knew that in certain ways I was very lucky. I felt reassured because I knew I was at a place near home, where people cared about me even though they just met me, a place where I was included in decisions being made even though I was only 14, a place where I had complete belief in my doctors and nurses because I knew that they had my best interests at heart. This makes me eternally grateful to each person who helped me.

But even surrounded by everyone at the hospital, I somehow felt alone in my battle. There was never a point in my five months in the hospital that I wasn't in contact with another person, yet I was fighting in solitude. This is because the enemy was myself; I had to fight something that was intrinsically a part of me, and no one else could help me fight me. This added to the challenge but also weighed me down.

At times the pain became too much, and if I was only going through this ordeal just for myself, I thought quitting might be a better option than experiencing the pain. It was then that I realized that I might be fighting alone, but I was definitely not fighting for only myself. I was fighting for the kids in the hospital rooms next to me, I was fighting for the doctors and nurses and everyone who was part of the cancer center, I was fighting for my friends, for my grandparents, for my brother, and for my parents. That's when I knew that along with survivorship comes responsibility. I was suddenly strongly connected to other people in the cancer community.

After treatment, my first year back to school for tenth grade was a real physical struggle. I was still bald and had to use the elevator. My teachers and friends could see that I needed tremendous support while I tried my best to be a regular kid. Then I would go home and go directly to bed until the next morning. I was still working hard to get through each day. By eleventh grade, I was looking and acting like my old self, but on the inside I was completely new. My thinking had changed, my dreams had changed, and I just couldn't make sense of why the details of school were important – even though throughout my treatment my main goal was to get well so that I could start school in the fall with my class. Because I was confused and had trouble sleeping, I also had trouble getting up and I began to miss classes, which added to my stress and further reduced my ability to sleep. Schoolwork seemed much harder. I had trouble focusing on what I was reading, made lots of careless errors in math, wasn't able to plan or organize my work and often brought home the wrong books for my assignments.

I didn't want to talk to anyone about it, but my parents asked me to write down my thoughts as a way to move forward. Actually, I don’t remember too much about this time period, as I also have short term memory loss as a result of chemo (which I guess in this case is a good thing). I soon learned there was a name for what I was going through, and it was called post traumatic stress disorder. It can be one of the major challenges for childhood cancer survivors. I do remember that I resisted talking to a therapist because this type of treatment was not part of my original roadmap and I didn't want anything extra. I've heard that many kids feel this way.

My story is representative of most, although I have been fortunate thus far to suffer fewer late effects than many other children. I now know that as I age, the drugs I took may affect my heart, my liver, and many other organs. Even though my treatment ended four years ago, I still get tired easily, rarely feel hungry, and seem to get a cold every time someone sneezes. I think it would be helpful to offer both a "roadmap during treatment" as well as a "roadmap after treatment" so that late effects during survivorship can be minimized. I also think that survivorship programs give everyone a more positive outlook. Doctors and nurses see that the kids they helped save are continuing to get the best care and current patients see survivors who have their hair and energy back, thus acting as visual signs of hope.

I know that I benefited from the experiences of children who were treated before me, because my protocol was the result of clinical trials that other children enrolled in. As a way to honor those children and help others in the future, I am trying to raise awareness and funds for childhood cancer research, for cures and less toxic treatments, and for survivorship programs. That is why I go to Washington to speak with representatives, that is why I share strategies that worked for me with other teens, and that is why I am sharing my story here.

After having cancer, I now realize what is important to me and what is not and when I am being true to myself and when I am not. Although it may seem that sometimes we are given too many choices and sometimes we are given too few, for me it is the understanding that it is not only the choices I am given, but the ones I create on my own that will mold who I am and who I become.

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