Embracing Every Emotion: My Path as a Pediatric Survivor

*Content Warning: death, suicide

A few weeks ago, I was talking to a cancer buddy, and he recommended I try to submit this article. I always felt like I couldn’t become friends with people from Elephants and Tea because I was so young with my cancer diagnosis. A few months ago, I tried to write another article. When I was writing it, I told my mom that I had nothing in common with these people. She told me that I did have something in common with these people because we have oncologist appointments, specialty doctors, and sadly suffer from depression and health anxiety. I didn’t believe her.
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I was diagnosed with H.L.H (Hemophagocytic lymphohistiocytosis). H.L.H is a rare disease that affects mostly young infants and children, although some adults can end up getting it. This illness is caused by certain white blood cells, such as histiocytes and lymphocytes, which attack your other blood cells. I was nine 9 months old at the time. To treat the disease, I had to undergo a blood cord transplant. My body was becoming sicker, so the doctors had to induce me into a coma. The doctors told my mom that I probably would not wake up, and she agreed. So, we went home, and she started making funeral arrangements. My great aunt gave my mom her burial plot, then one day, my doctors made a house visit to see how I was doing. They told me that I looked well enough to go to C.H.O.P. (Children’s Hospital of Philadelphia) for the transplant. I got the transplant, then I got a second cancer, non-Hodgkin lymphoma, when I was one. My mom told me that I had two leg braces, which I vaguely remember. My family friend calls me the miracle child. I have mixed feelings about that. 1.) I believe that Jesus is the miracle child. 2.) Why didn’t I die? Does God have some kind of purpose for me? 3.) Why do some peds patients make it and others don’t? I don’t remember any of this; my mom told me that it’s a good thing. I think that is what I have a hard time with; I was diagnosed so young that I feel so alone in the cancer community. My hospital just started a peds cancer group for adults; sadly, we barely meet. But for some reason, I’m so glad I found some organizations that meet virtually.
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I had a wonderful childhood. I spent a lot of time playing with cousins, watching Disney movies, and playing on the internet. Every few months, I’d have doctor appointments at my hospital; to me, they felt like normal doctor appointments, probably because I was so used to them. As a little kid, I gained an intellectual disability from cancer. It didn’t really bother me until I became a teen. I still deal with the emotions I dislike, feeling behind other people, and wishing I could keep up with my family at the same pace. It also takes away my independence, and I wish I could do stuff on my own, like live in my own apartment. But because of my disability and my health, I must live with my family. My earliest memory is when I had to get an IV in my arm. Before they did it to me, they did it to my Build-A-Bear. I sat on my momma’s lap, and they did it. When I was in 5th grade, I ended up in the hospital because my neck was swollen for a week. I remember telling my mom that I threw up. She looked at my neck, and then I was rushed back to the cancer peds unit. I remember feeling nervous about the test coming back. Everything turned out fine. I was in the hospital for a week, but it was the last week of school. So, my thinking behind it was, I wouldn’t miss out on much. As l became a teen, they put me in a follow-up clinic for childhood cancer. I still go once a year. I was a little bit nervous at first. I was afraid that I would end up getting it again. My mom told me that my cancer was so far out that they were mostly looking at the side effects of the cancer. I was a little relieved then.
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My teenage years into adulthood were hard; I faced so many challenges. My adoptive dad and I had a strained relationship until I was in my adulthood. When I was about 17, I found out that my eggs were most likely not viable. Which was disappointing because the older I got, the more I wanted to have kids. In 2022, I ended up getting epilepsy, and then I had to rely on my mom because my dad was going downhill. In 2022, I stumbled upon Cactus Cancer Society, then Elephants and Tea as a way to cope through it all. In April of 2023, I lost my dad to suicide. It was a relief, but I had many emotions, from anger to depression. After he passed away, I had survivor’s guilt because I tried to end my life when I was a teenager, but he stopped me. A few months later, I went to my first Elephants and Tea camp, which is held annually for Labor Day weekend. My mom encouraged me to sign up months prior. My mom was excited for me, and I was nervous as hell; needless to say, I had fun. I was always a momma’s girl, attached to my mom’s hip, and she was forcing me to meet friends. Last year, my mom rushed me to the hospital, and I was dealing with abnormal seizures. After about two days of being admitted to the hospital, I was diagnosed with Psychogenic non-epileptic seizures. I still deal with them; they are not as bad as they were, but they are still exhausting. I was afraid I’d miss camp because it was in two weeks. I talked to my therapist and doctors. I was able to go only if I took naps and took it easy.

​I’m going to camp next week, and I am excited to see my friends again. I’m hoping to go canoeing because sadly two times it was raining. Oh, I also can’t wait to play games until 1 am. I love to do yoga with Mamma G because I deal with a lot of trauma; it’s a good way to calm down the body and mind. My first time at camp, I was sitting on a bench and on my phone and heard a noise. To my surprise, it was a deer, literally a few feet away from me. I held still, trying not to move because I wanted to see this deer up close and personal. I did end up taking a picture of it. It is so pretty up there, you should come one day.