SKYE A.

Almost six years ago, Dad took us to the hospital to see Mom. She’d been sick a lot but I wasn’t sure why. Just before we went to see her, Dad said that Mom had cancer. She was in the hospital because they had to do surgery on her to remove tumors. I was eleven when this happened and I wasn’t really sure what all this meant. All I knew was that having cancer meant you were really sick and a lot of people died who had this disease. When we got to the hospital and finally saw Mom, she looked little and pale, but she smiled big when we walked in. Lots of people were talking but part of what they were saying was that surgery went well and she could come home soon. I remember Mom showing us pictures of the tumors from the surgery and they looked gross.  When Mom got home, everything seemed pretty normal. Life went on. Then two and a half years later, Mom came and told my little brother and me that she had cancer again. This time it seemed real. She’d been feeling worse and worse and wasn’t able to do as much anymore. I still wasn’t exactly sure what this cancer stuff was, but Mom said she had what is called Clear Cell Sarcoma, so she had tumors in her body that she described as little aliens inside her that were making her hurt. When she was describing this cancer she had, she said there weren't many people who had it in the world. It was extremely rare and there was no cure.That part hit me like a rock. I wanted these aliens out of her.After this news, there started to be a lot of fundraisers for her. People shaved their heads or their mustaches, because she started chemo and her hair was going to fall out. My friends were pretty supportive, but I don’t think any of them really understood it. They were nice about it, but never really said anything. I wouldn’t talk about it with them because they didn’t know what to say. Everyone always asked how Mom was doing and that’s always a hard question because I never really knew. She seemed okay, but I didn’t know that she was just putting on a strong face. I couldn’t tell people she was doing badly though, because then they just had these pitiful looks of their faces and they didn’t know what to say. All I would hear is “I’m here if you need anything.” But that’s not going to help make my mom feel better. That’s not going to help me if I end up losing my mom.Mom didn’t tell me much about what was going on with her and the aliens. One day I saw a picture of her in the newspaper. The article talked about the type of cancer, how long she’s had it, her family, etc. The one thing that stuck out was it talking about how the doctors had given her less than a year to live.I broke down. She had never told me this.The newspaper just told me that I had less than a year left with my mom.I had a deadline of time left with my mom, and it wasn't very long.This was when I really realized what was happening. My mom was dying, and there were no cures.The fundraisers kept going. I was 13 by now and it was a year full of changes. I switched schools. Gymnastics kept going, but my coach knew what was going on with Mom and would remind me that I needed to focus more and harder than anyone else because I had different things going on in my life then my teammates outside the gym. As the year went by, Mom’s battle kept going. Fundraisers started slowing down. Mom made us go to church now and started acting different. She was gone a lot for treatment. Her hair fell out and she took us wig shopping with her. She was doing everything she could to find different trials and treatments she could do.About a year after experimental treatments, her tumors shrunk enough to be surgically removed. Twenty tumors were taken out of her belly. She was sore but happy. Mom said she was in remission. From what I knew, she was healthy and back to normal again. She was home more often and working and my brother and I were able to do more things with her.Then my parents dropped the divorce bomb on us. Growing up, they always promised me and my brother, Jesse, that they would never get divorced, that they wouldn’t do that to us. So when I heard the news, I was completely caught off guard. I knew they didn’t seem as happy but I never thought this would happen. Since Mom was diagnosed the first time, Dad seemed more distant, uninvolved. I figured it was just because he was worried and wasn’t sure how to deal with the woman he loved having this awful sickness. Sometimes it’s easier to pretend everything is normal and to distance yourself, but Mom needed someone there for her, someone she could count on. After a lot happened, I realized why they did this.The divorce train was a hard one to be on. We went through a phase where one parent stayed at the house at a time with Jesse and me while the other stayed at a friend’s house. After a while of that, Dad moved into his own house. We had to figure out different things like custody schedules and what to have at each house and arranging the frequent transportation.At the end of my freshman year I quit gymnastics. My back had been giving me problems for a long time and I wanted time to try other things during my highschool years. I did gymnastics competitively for eight years and it was the biggest part of my life, my second home, my stress reliever, my passion. Quitting was the biggest decision I have ever made and the hardest change I’ve gone through. On the last day of school, Mom picked us up and drove us to Canada where Jesse and I stayed with my Grandma and Grandpa for several weeks so Mom and Dad could figure out all the ugly details that came with the divorce.Dad picked us up and brought us home. We were hit with another surprise. We were told that Mom’s cancer was back, for the third time. I didn’t like this kind of surprise, but bad things just seemed to keep happening. This meant Mom would get sicker and be gone a lot more. It meant people offering help, which got old because I would so much rather be offering my help than accepting help from others. With the cancer back, it also meant looking for new treatments. Treatments for Mom have always been far away so that messed with the whole custody thing because she could be gone for weeks at a time or for a few days. Jesse and I would even switch houses in the middle of the week so Mom could have some time with us. That fall, I started at another new school and began to play volleyball. Later in the school year, I broke up with my boyfriend of two and a half years which was hard because he had been the one there with me through all these changes and Mom’s journey. I started working as a coach at the gymnastics where I used to train. I met a lot of new people and got into a little bit of trouble. The summer after my sophomore year, I found a new friend group and I tried to do things differently. I didn’t have the security anymore that I had had from my ex-boyfriend and his family, so I started to fill my time with different friends and different influences that weren’t as safe. I was trying to fill my time with crazy things to keep my mind off of everything that was going on with my mom.After a wild summer, school started again and I only got into more trouble. I got in a car crash and had to go to court for that. I was in trouble for other bad decisions I made and I lost my parents respect and trust. That hurt the most. I realized that I was only making things worse. I was causing my mom more worry instead of helping her.As far as I know, according to doctors, I don’t know how much time I have left with my Mom. It may not be a lot. I know I’ve been given way more time than I was ever supposed to get with her, and I take that for granted sometimes. Seeing her come home from treatment only to be in bed half the time has become almost normal. I’ve gotten used to not having her push me to my limits physically by getting stronger and I hate it. I miss my strong, healthy mom. She’s my bestfriend and my hero and I don’t know how much longer I will have her influence in my life.This unexpected journey has taught me a lot. I’ve made it a goal to really cherish all the time I have left with her, however long that may be. The next day is never promised, so it’s important to make the most of every moment.'Carpe Diem'. Seize the Day. That's what we do.

Clear Cell Sarcoma Foundation is ready to answer any questions you may have.

If you need immediate assistance, please call our general line and leave a detailed voicemail.

Your message has been submitted.
I will get back to you within 24-48 hours.
Oops! Something went wrong.