Peter’s Letter

I hate talking about my life, as if I was bragging about what I went through. Everyone has their own struggles and some struggles hurt more than others. I am grateful for those who worry everyday about me, but I worry about those who lose sleep and stress over the fact that I have to go through the things that I do. When I was 5, I was diagnosed with Neuroblastoma. Even though I was young I still remember very clearly to this day. I would spend most of my whole kindergarten and first grade years in the hospital. The days I would go into school, after chemo, everyone would stay away from me thinking I had some sort of disease that could spread. This was only because I was bald. I had two good friends that cheered me up no matter what. I have not talked to them in a while though. Treatment was rough. I grew up knowing that some days might be more painful than others, but still pain, nonetheless. I could not do the things I love, without risk of getting injured. Doctors answer every time I asked to go swimming or to a water park, “No” they would always say because of my central line. Every day I hear the same phrase over and over “It will get better.” When I would always think to myself, the pain just seemed never ending. Then they finally removed the tumor after couple of months fighting. I was all skin and bones and had to gain back my strength. I started to swim for a swim team. I turned out to be very good and fell more in love with the sport. Fast forward 5 years, I get announced cancer-free. My whole family and I especially were very happy to hear that. No more pain I thought to myself. Another 3 years go by, and a snowboarding accident ends my trip early. I could not move my leg for a solid week. Thinking it was just a bruise, I kept going on with my life. I kept feeling a tingling pain in the same spot for a while. Then I went to the hospital for my yearly checkup, something came up on the scans. Another tumor, well what is another run, right? I thought. The only viable option was chemo. The tumor was too big to have surgery because it would remove all my muscle. I was diagnosed with synovial sarcoma and needed chemo and radiation for the tumor. I got multiple surgeries just for a central line. I go on to spend the rest of my school year in the hospital away from friends and doing the things I love. I could not compete in the state championships for swimming, because of all of this. I would go on to spend my birthday receiving chemo and trying my best to stay positive. My friends tried to see me every chance they could, but it was simply not that easy. My Tumor removal was in May 2020, Covid – no one can be with me except for one parent, my friends and family did a drive by to wish me good luck and see me off to the hospital, yet for another long stay (without visitors) I was bed bound for initial part of summer, because of my surgery. I had little vacation and lost my hair on top of it, which made me insecure. Everything was great until some nodules showed up early fall of 2020 in my lungs. I was harvested for T-cells, but they could not find a good vein for 2 straight hours. They found it, I couldn't move a single arm for another 6 hours during this collection. I got to go snowboarding few times in the whole season, before my central line was put in. I still went snowboarding every day before I went to a hospital for a month. I was in the hospital for immunotherapy. It was a another long stay, I couldn't go outside and see the world. I could not play volleyball, swim, or do anything active. I had MANY high doses of chemo that made me feel terrible and sick. I did not sleep for most of the time I was at the hospital. I had the best nurses who helped me through it and my best friend facetiming me and cheering me up by playing games with me. I was admitted to the hospital middle of January 2021 for more chemo until my birthday on February 11th. I got released, but still was not able to go out and have fun, not until my counts are back. My hair was back until this point where I shaved it again because it started falling out. I finally got back to swimming and had a rough start but shocked everyone as soon as I came back, beating all the seniors on my team and winning almost all my races. Then a couple months later and it turns out the immunotherapy did not work as well as we thought. The nodules are still there, and the only other form of treatment is by putting more chemicals in my body (radioactive infusions), like I don't already have enough. More radiation will help, but at what cost? Back to what I have been hearing my whole life: “It will get better.” When will it get better? I'm still waiting.

 — Peter Tyszko

Letter from Leslie Marnett Welch, MS, CCLS About Peter

I met Peter and his family when I was working as a Certified Child Life Specialist at Memorial Sloan Kettering Cancer Center. My job was to help families understand, assimilate and cope with the “new normal” of living with a cancer diagnosis.  All of us working there knew that both the parents and the children wanted to be ANYWHERE but on the pediatric floor of a cancer center. We knew that kids wanted to be playing and experiencing their lives outside of the hospital. We knew that we could not erase the pain, frustration and fear that came with receiving a cancer diagnosis.  So we hoped that we could have some kind of positive impact on the families we served.  As it happened, Peter and his parents are the ones who had a positive impact on me. Their resilience was remarkable. Their humor was appreciated. Their bond was admirable. And, Peter’s smile brightened every single room and every single spirit it graced! 

Peter was five years old when he followed me into our giant playroom so that the doctors could speak with his parents about his diagnosis and suggested treatment plan.  He was appropriately nervous when we sat down to color together. Afterall, I was a stranger. But within minutes, his innately jovial spirit emerged and his genuine, joy-infusing smile came out. They remained dominant and consistent characters throughout our time together.  

One of my favorite memories with Peter involved his coveted stuffed animal, Lucky. I walked into Peter’s room where he was staying post-surgery and noticed his very sad expression.  Initially, I thought he was struggling with his recovery. However, without saying a word, Peter’s father gently handed me Lucky, who had a large rip in his belly. Peter wasn’t worried about his own pain. He was worried about Lucky’s. With needle and thread in hands, Peter and I transformed his bed into an operating room and began stitching Lucky back together. We modeled our procedure after Peter’s surgery and we talked about different ways that could help Lucky cope and get back to playing and seeing his friends. Peter naturally engaged with genuine interest and pure intentions to help Lucky get better.  Over the years to follow, I witnessed Peter always willing to help others in spite of his own circumstances. 

Peter was one of the most intelligent, open-hearted and compassionate kids I knew.   He instinctively understood that joy was a key component to healing. He not only craved it;  he was committed to sharing it. Powered by his amazingly generous and unconditionally loving family, Peter’s legacy is carried on through the Peter Tyszko Foundation, whose mission is to facilitate joyful memories for every child fighting cancer. It is a privilege to be connected to this organization and an honor to have been graced by such an angel.