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Amanda: A sibling's story

My story begins in December of 2001. I was just eight years old and in third grade. I had had a normal school day, when the principal called our classroom and told me that my sister and I were to go home to our friend’s house, which we didn’t think was weird at all; we’d done this before. We spent the afternoon there, had dinner, and even got into our pajamas and got ready for bed. My Dad came and picked us up, and we went home still thinking that nothing was wrong. When we got to the house, my Dad took us up to Julianna’s room and told us the unimaginable. My 2½ year old baby brother had been diagnosed with cancer. I panicked. My sister and I started crying hysterically. We were just seven and eight years old, and cancer was such a scary word for us. Even worse, I had just read the book, A Thousand Paper Cranes, in which that main character died of a type of leukemia, the type of cancer that Carlos apparently had. My Dad, sister and I packed up a bag to bring to my Mom at the hospital, remembering to pack a few toy cars for Carlos and some herbal teas for Mom. My Dad left to deliver the bag to Yale, while my Mom’s best friend Alison (the woman whose house we spent the day at) watched us. The first thing I did after my Dad left was write in my diary. The last thing I wrote on the page was a huge, broken heart that said “I’m so sad!” written on the inside, with blue tears surrounding it.

School was so hard the next day. I told my whole class about what happened, and everyone was so supportive and caring, which did make making it through the day a lot easier. However, when it came time to tell my friends, I just broke down on the playground and started crying. When they told me that they understood because their grandparents had cancer, I felt even more isolated. They couldn’t possibly understand; their grandfathers were old, but Carlos was still a baby, and he was so close to me. Although my friends thought that they were helping, and a lot of the time they did, their comfort at times felt false. Also, because my friends were so young themselves, they wanted to tell me about their problems, which I just wasn’t ready to handle. I wanted the focus to be off of them and Carlos, and to be on me. Understandably, I felt a little needy, especially in the beginning. That first week that Carlos was in the hospital was probably the hardest on me. I almost never saw both parents together, and when I did, they both were too run down to talk about anything but Carlos. My Dad “quit” his job for the rest of the year to help out, but he still wasn’t around very much. Yet, my family was my biggest comfort to me. We held nearly nightly family meetings, where our “American Girl Dolls” vented about how annoying it was that Carlos was getting all the attention. My sister and I slept in the same bed for months. I practically moved in with her, even taking up a drawer in her room for some of my clothes. When Carlos had to have treatment and was in the hospital for a few days, my parents switched places every day or so. Whenever this happened, my Dad took us rock-climbing at a local gym to distract us. When my Mom came home, we always had a “Girl’s Night,” with dinner at a favorite restaurant, a movie in bed, and a sleep over in Mommy and Daddy’s room, a rare and special treat before Carlos got sick. It was a comfort to know that we always had each other to help each other through this difficult time.

When Carlos was home, nothing was the same. Before he was diagnosed, I remember being in the middle of a piano lesson downstairs, while upstairs, both Carlos and my Mom were crying; Carlos in pain, and my Mom out of helplessness. She could do nothing to bring down his soaring temperature and ease the pain. After diagnosis everything changed again. Carlos was sluggish, often not even getting out of bed for days at a time. He watched Shrek so many times that my sister and I can still quote entire scenes from the movie. Carlos used to love pushing around his toy trucks, and it used to annoy the entire family. The only time I remember my Dad ever crying was when he was picking up those toys, thinking about how Carlos may never have the strength to play with them again. On the flip side, Carlos was an amazing patient. Whenever he did feel well enough to play, he would. In the hospital, he used to stand on his IV pole and have my Mom and Dad race him up and down the hallways. He was still my annoying little brother. His courage was unfailing, and he almost always had a smile on his face, even when his counts were so low he couldn’t even leave the house. His spirit amazed his doctors, his teachers, and his family.

Today, after 2½ years of treatment and almost five years of being in remission, Carlos is your average seven year old. Besides having to go to the doctor’s every other month for a special check-up, he is exactly like all of his classmates. He adores the movie Cars, loves to play outside, is good at math, and has a “girlfriend” named Lily. He’ll be going into second grade next fall, and next January, we will be celebrating his five years in remission mark, the “safe zone” for cancer survivors. Our family has been made all the stronger by going through this ordeal. We still have family meetings when we need to, and we all know that we will always be there for each other. Throughout this whole situation, Carlos is the only one who has gone unchanged. He is still a happy-go-lucky little boy. Whenever I think of what my family has been through, I can’t help but smile, because despite everything, we are really lucky to have a person like Carlos in our lives.

— Amanda, Age 13

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