A Teen’s Experience with Pediatric Palliative Care

By Soraya, on behalf of Courageous Parents Network.

Hi, I’m Soraya, and I’m 13 years old. I’m a kind and trendy girlie who loves a lot of things! Some of my favorite interests are playing games on my computer and iPad, playing with dolls (especially with my babysitters), my nails, reading graphic novels, and shopping for make-up. I also really love spending time with my friends and family—we like watching shows together and listening to music. That’s when I feel happiest and most like myself.

What makes me “me” is the way I connect with people. I feel people’s emotions deeply, and I always try to be kind and thoughtful. Even though I have a lot of interests and fun things I like to do, lately my body has been getting too tired to do everything I used to. But I still try to enjoy every moment and focus on what really matters—being with the people I love.

I have a medical condition that I’ve had since I was born. The doctors don’t know the exact name of my disease, which can be frustrating. It started with trouble eating when I was a baby, so I got a G-tube to help me eat. When I was younger, I could walk and run, but a couple of years ago my body started getting weaker and more tired. I began needing a BiPAP machine to help me breathe, and a wheelchair to get around. Now, my muscles are getting tighter and weaker, and I’ve been feeling a lot more pain throughout my body. I have a lot of medical symptoms, and while I know I’m dying sooner, I don’t know exactly when.

I’ve been working with a pediatric palliative care doctor for about three years now. Their job is to help me feel as comfortable as possible and support me and my family through everything. One of the biggest ways they’ve helped me is with pain management. Because of them, I’m still able to do some of the things I love without being overwhelmed by pain. They also help my parents come up with ideas to help me conserve energy.

One really helpful thing they did was talk to my teachers when I wasn’t being understood at school. My doctor explained that I’m dying sooner, and it helped my teachers understand my situation better. That made a big difference.

The palliative care team has also brought so many people into my life who support me and my family in different ways. There’s a massage therapist who helps me feel better physically and mentally. One of the very first things they did was help us apply for Make-A-Wish. I got to surf in Hawaii, which was incredible, and we made the most special memories together as a family. They even let my sisters come to appointments and ask

questions—they know my sisters worry about me too. The music therapist plays calming music that I love, and the child life specialist does fun activities with me and my sisters. There’s also a chaplain and social worker who really support my parents. And I have a few favorite nurses who check on me regularly.

One time that palliative care was especially helpful was when my doctor came to visit me at home. I have so many doctor’s appointments that they really wear me out. Having my palliative care doctor come to my house was so comforting. They got to see my family and meet my pets, and it made things feel more personal and less stressful. Even though we had to talk about hard stuff, it was so nice to have that visit at home. I really wish more of my doctors could do visits like that.

Palliative care also helps me feel like myself and helps me do the things that are most important to me. They let me make decisions about my own care, which makes me feel in control. For example, recently I was getting too tired to take showers every day, but I felt bad about it. My parents weren’t sure what to do, but the team helped us decide that sponge baths are totally fine. That made a big difference in how I felt—more relaxed and understood.

Also, chewing and swallowing has been getting harder for me. Normally, I would have to do a swallow study, but I really hate the contrast taste and those tests are hard for me. The palliative care team supported my decision not to take the test. Now, I just eat what I want, when I want, and enjoy food without worrying.

Palliative care helps me be myself, stay comfortable, and spend my energy on the things I love most. They make it possible for me to keep living my life in the most meaningful way I can.