Sibling of the Month - August 2018
Monica is 10 years old and going into the 5th grade. She loves playing with her sister, doing art, and playing soccer. Monica is attending sleepaway camp this summer for the first time and is very excited.
Monica’s little sister, Alice, was diagnosed at age 2 with hepatoblastoma. She has gone through chemotherapy, and also had a liver transplant. Monica is going to share some of the feelings she experienced and a few tips on what helped her during the long hospitalizations her sister had.
Pictured here is a Body Outline. It’s an exercise Jennifer, a Friends of Karen Child Life Specialist, did with Monica. This is an activity that helps children identify feelings they have and where in their body they feel them. As an example, Monica put “scared” in her stomach, because she gets a stomach ache when she feels scared/anxious. She put sad and lonely in her head, because she doesn’t tell many people when she feels that way so she keeps it to herself.
Can you tell me a little background about when your sister was diagnosed?
My sister wasn’t feeling well so my Mom took her to a couple doctors. They thought she just had an ear infection, but then one day, I came home after school and no one was here. I waited for a few minutes and then walked downstairs to my babysitter’s apartment and she told me my Mom was at the hospital. I asked why and she said “because of your sister.”
Was that when she was diagnosed with cancer?
Yes. And she was in the hospital for a very long time. I was scared because I didn’t know what was going on.
What was the hardest part about your sister’s first hospitalization?
I had to wake up earlier to get myself ready for school because I had to get ready myself. I also stayed with my Aunt, because both my parents stayed at the hospital, so I had to pack my clothes in a bag.
What was the scariest part of her first hospitalization?
When my Mom and Dad were crying and told me my sister had cancer. I just started to cry because I thought my sister was going to die. All I wanted to do was play with her because I always wanted a little sister.
What were some of the feelings you experienced during this time?
I felt sad and lonely. And I was worried because I didn’t know what would happen to her.
Since Alice has been sick, what have been the biggest changes in your life?
My routine, because when my sister was healthy we would do things together, like visit family, go to the store, and go to the park. But once she was sick, I just had to stay with my Aunt and when Alice is home we can’t do anything so we just stay inside.
What advice would you give to other siblings?
I would say that sometimes it’s hard to have a sister or brother that is sick. Doing things to help distract you can help so you aren’t always worrying about your brother or sister. Other family members can be great to help take care of you.
What have you learned through this process?
I learned all about what having cancer means and how hard it is. There is a lot of medicine and side effects. It makes me feel better to know that I’m not alone. I have family members and I appreciate that they take care of me. I also want to stay healthy because I don’t want to cause any more stress for my parents.
Is it hard for you to talk to your parents about your feelings?
I will talk to them, but I don’t want to cause any more worry or stress for them. It’s helpful to have others to talk to.
Now that Alice is home what is your favorite part?
I love having her home. No more machines, doctors or beeping noises. Here it’s just us, and we can play and relax.
Some kids say they feel worried or scared to ask questions. What do you think of this?
I think it is really helpful to ask questions because you learn what is happening. When you don’t ask, you worry because you don’t know what is going on. When you ask, they can explain what is happening and then you understand.
You are about to go to sleepaway camp for the first time, what are you most excited about?
I’m excited to meet new people and friends, and to do all the things I haven’t been able to do like play outside.