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What's Up Wednesday -- Anna-Maria

KAP_CHA_Advocacy_Dinner_2016-042.jpg#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Anna-Maria, a recent Speak Now for Kids Family Advocacy Day Hero. Anna-Maria was diagnosed eight years ago with a low-grade brain tumor of the hypothalamus and optic pathways that caused hydrocephalus. Currently in treatment, and followed closely by multiple highly specialized physicians at Kosair Children's Hospital, Anna-Maria attends high school and is actively involved with her swim team and youth group.

So Anna-Maria…what’s up?

1. Why do I advocate?

Every moment I have spent in a clinic or a hospital, I would imagine: What could be different? What could make this experience better? I have all kinds of ideas including: making it less scary for little kids, creating hand sanitizer and antiseptic that doesn't smell like alcohol, healthier/better food that doesn't taste like McDonald's; blech!, and better use of technology in the hospital (like maybe Netflix), making MRIs less noisy, etc. Because I started as a patient at age seven and I'm still undergoing treatment now as a teenager I think I am well qualified to represent both perspectives. I advocate for myself and kids like me because I've witnessed so many improvements in my years as a patient and I want to participate in making things even better.

2. Person I find most inspirational

The person I find most inspirational is hands down my mom. We have been through absolutely everything together. Whether it's her watching me go outside and scream my head off when I finish a round of chemo or get a good MRI, or her sleeping in an uncomfortable hospital chair all night (well really more like 20% sleeping and 80% worrying about me) instead of leaving me alone for the night. She is a doctor, so she has taught me everything there is to know about advocating for myself. We have been through the ups and downs, but I know she is always there for me.

3. What makes me unique

I think that I have multiple characteristics that make me unique. Most people can't say that they've had 12 brain surgeries, but that's not it. I love taking photos with my camera. I love doing intricate designs on my nails. I even got to paint one of my doctor's nails once! I love Photoshopping kooky, crazy photos on my computer. My medical history is a big part of who I am, but it's not all that I am.

4. What jam gets me up when I’m down

I'm very rarely ever "down", but if I ever need a little pick me up Pharell Williams does the trick. I like upbeat, fun music that makes me want to party!

5. What have I overcome?

Instead of laying around and feeling sorry for myself, I have decided to take a different route by staying positive and seeing the best in everything that happens to me.

6. What do I want the world to know about my condition?

I am still undergoing treatments, even though I was diagnosed 9 long years ago. I've been through 7 rounds of chemo and I am currently on my 8th. I have had 12 brain surgeries in both Boston and here in Louisville. I also went to Boston five years ago for 6 weeks of proton beam radiation therapy In 2011. Having cancer is really hard, but I just try to stay positive and support kids like me!

7. If I could change the world, I would….

Well for starters, I would DEFINITELY get rid of cancer. Also, I would end all wars and fights. How hard is it to just get along?! Finally, I would want for everyone to love and accept one another.

Who, or what, is my biggest supporter?

My mom

What does my children’s hospital mean to me?

Kosair Children's Hospital means the world to me. They are the reason why I'm not just alive, but thriving! I wouldn't be where I am today without them.

How do I plan to give back to the world?

I give back to the world by serving others. Service is a huge component of my life. I plan on giving back to the world by inspiring and encouraging kids like me.

What do I want to be when I grow up?

Tough one. Originally I wanted to be a doctor like my mom, but as I've grown older I'd like to tap my experiences and my personality by working with other patients. Maybe some role in the hospital helping encourage people get through it. I also love fundraising. Photography is a passion of mine and it too is a possible career choice. I love taking fun photos and it's a great way to interact with people as well.


Missed Anna-Marie's original post? Check it out here

 


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