When I was in seventh grade, I started getting headaches and lost my appetite. That wasn’t like me – I love food. Not eating was actually stranger than the constant headaches. A couple months later, I noticed the right side of my neck was swollen and hard to the touch. My sister, Brisa, and I started googling. I remember seeing links about lymphoma, but there was no way I had cancer. I never got sick as a little kid, so I didn’t think it could be serious. When my mom took me to see my doctor, I was just excited to take the day off school.
A chest x-ray came back fuzzy, so she sent us to the hospital. The doctors there ran more tests, but couldn’t figure me out. They thought I might have tuberculosis or some other contagious disease, so they put us both in isolation. We didn’t expect that at all! We thought we would go home after the tests, so we hadn’t packed anything.
We stayed in isolation together for a month.
My dad took care of my brothers and sisters on his own while we were in the hospital. When they visited, everyone had to stand behind the window looking into our room. The staff brought me my homework to stay busy, but other than that, we went stir-crazy. I’m so glad my mom was with me so I wasn’t alone.
My doctors stopped thinking I was contagious and moved to a regular room. I had a lymph node biopsy to try to exclude cancer and we went home to wait a week for results. My mom says it felt like someone threw a bucket of ice water at her face. Cancer is something you think about happening to adults, not your kids.
The first biopsy was negative but my doctors wanted to keep testing. We hoped they’d call to say it was something else, but I was diagnosed with Hogkins Lymphoma instead. I was confused and scared.
How did this happen? What do we do now? I had so many questions.
The drive to chemotherapy was two hours each way, but I loved spending those car rides with my mom. Usually we talked all the way to the hospital, but sometimes we’d just look at the road and enjoy not talking together.
It’s hard being a kid with cancer. I wanted to do normal things and not feel achy or nauseous all the time. It might sound crazy, but I think that’s why I obsessed about having good food during chemo and radiation. It made me feel better. I loved making these incredible baked potatoes with cheese, butter and bacon bits – so good!
I was excited when my first post-chemo tests came back with no signs of cancer. I still needed PET scans every month, but I really thought I was done being sick. Then, in January 2017, I had a follow up scan and little spots lit up on my neck, hip and chest. My cancer had come back. I was so disappointed and mom was devastated. She worried that my cancer would get worse this time. We started our long car rides again. We sold our old car to buy something more reliable for our trips.
In May, my doctors told us I needed more advanced care than our hospital could offer and referred us to Lucile Packard Children’s Hospital Stanford for a stem cell transplant. We left for Palo Alto not knowing what to expect. We stayed at a hotel for a couple nights before getting a room at the Ronald McDonald House at Stanford.
The House is amazing. This has been like home to us. We can relax and spend a lot of time together. If it’s possible to have a favorite part of a hard situation, the time with my mom is my favorite part. My dad and siblings are still back home so they can continue school, but they visit. We FaceTime and text each other a lot, and even though we’re not all together, they’re happy knowing I’m getting better and I’m happy that I can still know what’s happening back home.
I know my mom feels better being here too. She appreciates all the little things like cooking for us and having the volunteer meals after we’ve been at the hospital all day. She likes being close to the hospital and the shuttle that gets us there quickly, the laundry rooms, the trips to the grocery store and talking with other moms. She knows I’m safe, close to my doctors and doesn’t have to worry about how to make things normal for us.
We love the activities too. Especially Bingo nights and baking. I love making alphabet soup, banana bread and cookies. That’s what I’d want to tell other kids about the House – you can have fun.
On August 7, 2017, I had my stem cell transplant and am feeling great. My cancer’s gone again and my hair is growing back. I choose not to wear a wig, though. I don’t mind my bald head and am confident about not covering it at the House. We’re heading home soon and I’m most excited to see my dad, siblings and cat, Lila. She’s just had six kittens and I want to be there to help her take of them and watch them grow.
Sometimes I wonder what life would be like if I didn’t get sick. Would I change my cancer? Of course, but having my mom here makes it so much easier. She’s the person I’m closest to in the world and staying at the House gave us the one thing we both needed most during this crazy time: more time together. Now we get to share the future together, too!
–Jiselle Pantoja (age 14)