Life As A Cancer Sibling
Hello! Welcome to the Campaign One At A Time blog page!
My name is Zoie and I am the big sister to pediatric cancer fighter and campaign kid, Ellix. I am sharing my perspective on cancer in the life of a child and as a sibling of that child. My four (soon to be five) year old brother Ellix was diagnosed with acute lymphoblastic leukemia when he was 2 and a half. The majority of information and points of views are from adults, making many people only aware of how adults view things like cancer diagnoses. I wanted to introduce a new point of view on my brother's diagnoses and how all of it has affected me as a sibling and a child in the cancer world. As well as my point of view on how it affects my brother and the rest of my family.
The day I found out Ellix was diagnosed I had lots of questions. I wondered what type of cancer he had, I wondered if it was somehow my fault, I wondered how long the treatment would last, I wondered what hospital we would go to, would we have to move houses? Would we move states? What medicines will he take? Why will he need to take those medicines? What do we know about cancer, and what causes it? How would we afford his treatment? Some of these questions took a long time to be answered, partially because after Ellix’s diagnosis I didn’t get to see my parents much for the first few months. Over time most of my questions got answered, but one. Would he live? Which is strange to wonder because we don’t really get to know the answer to this. I really do believe that he will beat cancer forever. I never thought about it much, but looking back, I didnt even think that it was possible for kids to get cancer. I remember going to school and having to be even more careful than before. My brother was diagnosed during covid restrictions, so we had that to be worried about and all the other germs too. Even after other kids didn’t have to wear a mask, I still did. My perspective at first was mainly being confused about this and so many other things. There was a huge shift in the way my family, and my brother and I lived after cancer. The way I did school changed, where I lived changed, who I saw on a regular basis changed.
My brother has to take plenty of medicines which was a very big change for him, so is going to the hospital.
The day my brother was diagnosed started out as a normal day at school. I had finished school and was eating lunch at my Nonna’s house. That day, I was at her house because my parents were at the hospital with my brother, because he was sick but we didn’t know why. My Nonna came out and told me that my brother had cancer. That is something I never thought I’d hear. As his older sibling, I felt it was somehow my fault for not taking good enough care of him, or not saying what I noticed from before he was diagnosed.
Right after his diagnosis life changed and it changed fast. We had to get rid of our two cats and one of our dogs, which was a very big adjustment and had a pretty big impact on me. After the diagnosis we had to move houses, to live with my pop pop. Which meant changing cities and schools and not being by any friends. But that wasn’t too bad, it was definitely an adjustment for me though. Unfortunately thousands of kids have to go through what me and my brother went through every day. If your sibling got diagnosed, or if you got diagnosed and you are reading this I want you to know that you’re not alone and all your feelings are okay to feel.
Coping can be difficult but what helped me cope was just not being sad, whenever I started to feel sad at the beginning, I reminded myself that I still have my brother, and that he is still here to hang out with me. Adults call this being in the moment and not in the future. Another way I cope is distraction, I don't often feel sad, but when I do I find writing a book or playing video games or drawing or even doing schoolwork distracts me from it and makes any sadness go away. I don’t know if anyone else feels or felt this way, but it often feels selfish when I feel happy through this. For instance, when we went on a special trip, to give kids the world. I felt selfish for having fun, I thought “This is your brother’s trip, it's not for you, don’t be happy, if you’re happy you’re making it about you.” If anyone else felt this way, just remember, you matter too. You can be happy too. You’re fighting too, it’s ok to feel whatever emotions you feel, whether it be anger, sadness or joy, you are entitled to your emotions. It is also important to talk to someone you feel you can trust about it.
Despite all the negativity that came with this life with cancer and life as a sibling of someone with cancer. For me, it doesn’t mean me, and my brother don’t get to have fun. My brother can’t just go out and play in a park and he can't just go out and play wherever he wants to like most kids can, because it risks him getting sick or when his blood is low getting dangerous injuries. But Campaign One at a Time made it so that we could still have fun and make special memories. Things like send us to Give Kids the World Village, where Ellix (my brother) could play in a park, and play in a pool, and do all these fun things he normally wouldn’t be able to do, and we missed doing for a long time. This was also special for me because I got to do all these things and meet people who understood this life. We also got to go to Disney World, Sea World, and Universal! We got to go on so many rides, meet fun characters and see so many animals. We even got to feed seals and dolphins. Campaign One at a Time has helped Ellix and I make a whole bunch of friends through this organization too. We have attended a Gala, fun events, like a hockey game. Campaign One at a Time really helped my brother and I have fun.
Thank you for reading and letting me share my voice. Stay strong everyone. Oftentimes, kids' opinions are overlooked and their voices aren’t heard because they aren’t adults. Campaign One At A Time wants to hear our voice! I would love to write a blog on your behalf through Campaign One At A Time, as a sibling or childhood cancer fighter directly. If you would like to share your feelings in a blog like I did and your parents are okay with it, you can contact me via email at Zoie@campaignoaat.org or you can message me (Zoie) on Instagram via @fighting_for_ellix.
-Zoie