Maya’s Story: Living Outside of Hospital Walls

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  Today’s blogger contributed two posts and I couldn’t choose, so am posting both.  Read and you will see why.

By Maya

This story is not a diagnosis story, it’s a maintenance story. Last year my mom, Rachel, told my diagnosis story.  My name is Maya and I am 13 years old. I was diagnosed with Acute Lymphoblastic Leukemia when I was 11.

September Maya1

Maintenance? Not a lot of people are familiar with what maintenance is. It’s the longest stage of treatment for leukemia that comes after several months of intense chemotherapy. Every month you go in to clinic for a check-up, and some months you have a spinal tap.  There are a lot of pills too. Here’s the catch though, if you have a fever you have to go to the ER to get checked for an infection.

For me, maintenance is bittersweet. You have a month of freedom uninterrupted by doctors’ appointments or hospital visits (if you’re lucky). When that month ends, it feels as if it went by so fast, and then reality comes back to remind you you’re not done with treatment yet.

When I go back to clinic I get very upset because it reminds me that I’m sick. Not that I ever really forget, but it’s hard to know that you’re going back. Chemo is the worst part, in my opinion.

Some kids hate the blood draw, some hate spinal taps, but I don’t really mind those. Chemo to me not only makes me feel horrible inside, it also tastes horrible. Guess what else? Besides the IV chemo I get at clinic, I take chemo orally every day. And once a week I have to take an extra chemo at night that makes me nauseous and makes me feel crummy the next day. On the weekends, I have to take antibiotics. And for five days after my clinic visit every month I have to take steroids, which make you retain water weight and make you feel hungry and moody.

The medicine isn’t the only bad part either.  You have to wash your hands or carry around hand sanitizer consistently, making sure you aren’t exposed to germs.  And you get tired more easily because your blood count isn’t totally back to normal. It’s hard for me to do things like jump, run, climb, and keep up with my siblings because I get chemo that affects my legs.

Losing my hair was one of the worst parts, I felt ugly and alone. Sometimes it’s hard to meet new people too because I’m self-conscious about having cancer. I don’t know how people are going to react to it. These things are hard to face, but even on the worst of days, I try to find something positive.

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I like to think that with everything bad that comes with maintenance, I can find a good thing. My family, friends, and community have been wonderfully supportive. There is a big St. Baldrick’s event in my town every year and my middle school also had a childhood cancer awareness assembly last year in September for me.  I’ve gotten to go to a camp for kids with cancer twice and also to Park City, Utah for a ski trip with a bunch of other kids with cancer. It was so cool to see that I wasn’t alone and how much everyone understood each other. This summer I even was able to go on vacation to Florida with my family for the first time in two years to a retreat for families with a kid with cancer. This was probably one of the most memorable summers of my lifetime.

Throughout maintenance, I’ve been able to go to school normally, usually missing only one day a week. I’ve also made a lot of new friends this year, in and out of school. I feel that my friends have been really important in this stage with keeping me positive and understanding when I can’t do things. My friends always keep in touch with me when I’m on chemo or have to go to clinic. Even at school they check their phones for texts at their lockers and my teachers are okay with them checking on me. It makes me feel so lucky to have such amazing friends and such great teachers.

I love having a month to live outside of hospital walls, like nothing ever happened. Maintenance is a little taste of freedom before I finish treatment, almost like it’s preparing me for when I’m done.

I think the most important thing that this experience has taught me is that with each day, there is always a bright side to look on.

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Being diagnosed as a kid makes you grow up fast. You have to be mature and strong and part of my childhood kind of flew by because of that. My mom made sure that we stretched my childhood out. Cancer sometimes makes me very depressed when I think about it too hard. My mom always talks to me about it and helps me stay positive.

My mom has done everything possible to make me happy throughout this experience, and she is probably the person I’m closest to. This sounds weird, but my mom is my best friend. I can tell her anything. I love everyone in my family just as much as my mom, but my mom and I have spent so much time together since I got sick that we’ve created a special bond.

When I was first diagnosed, my mom slept on my floor for 58 days straight. She stayed home with me almost every day for about 7 months. She still takes me to the hospital every single time I have a clinic appointment. We sing along to the radio and play games during the 2-3 hour drive to the hospital. I will always remember the times, both good and bad, that we’ve spent together.

My mom would do anything for me. During my inpatient stays in the hospital, she slept next to me and would run down to the gift shop or restaurant to get me whatever I needed. When I was on steroids, she would get whatever I craved. Like when I wouldn’t eat anything except for Olive Garden breadsticks and she would drive across town multiple times in a day to get them. My mom even woke up in the middle of the night and got me food when I needed it. She also carried me when I couldn’t walk and cleaned up my vomit.

She is my hero.

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Together my mom and I, along with my family, have raised over $20,000 dollars for cancer research funding and patient care. I love the feeling of knowing that I might have made a difference for someone who is going through what I went through. I want to start a foundation to raise money for pediatric cancer research with my mom someday. I also want to write a book with her someday.

My mom is my role model; I hope to be just like her when I grow up. I’m very lucky to have the mom that I do. I don’t feel like I say it enough, but thank you, mom. If I had a dollar for everything that you’ve done for me I would be the richest person on earth.

This is dedicated to my mom, Rachel.

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So grateful to Maya for lending her unique perspective.  And so impressed with her writing.  Her parents are raising an amazing kid.

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