The Ninth Tuesday: We Talk About My Hero

Each Tuesday that I’m at chemo, I think of someone else that is also sitting in a chemo chair 135 miles away in Delaware. Long before Tuesdays were mine, they were hers. And she has proven that even though she is small, she sure is mighty. My hero is a 10 year old girl named Lilly.

Lilly has neurofibromatosis type 1. NF1 is a genetic disorder that predisposes a person to cancer. So at just six years old, Lilly and her family got some life-changing news, she had a tumor. She has been through more in 10 years than most people will encounter in their whole lives. And how does she do it? With nothing but grace, bravery, and a whole lotta dancing.

Lilly’s motto is “I am not afraid, I will be brave.” Which she has stood by despite everything that has been thrown at her. In 2015, Lilly went into remission. Amazing news that her whole family and support system celebrated. But only a few months later, tumor changes were spotted on her MRI. So in February of 2016, Lilly and her parents chose to start another year of chemo, a decision that I am sure was not an easy one. And she is still going strong, Tuesday after Tuesday. Her most recent bump in the road? Her port was blocked, so she had surgery yesterday to unblock it. Surgery was successful, and Lilly was nothing but smiles post-op.

I met Lilly through the University of Delaware’s UDance marathon that raises money for the Andrew McDonough B+ Foundation. Every organization that participates in UDance gets assigned a “hero,” a child that the foundation has supported. Lilly is my sorority’s hero. She is not only our hero, but also our sister. Her and her family support us and we support them.

I have seen how brave Lilly can be and have always admired her resilience. Even at such a young age, she has changed my life and the live’s of others for the better. So when I got my diagnosis, I thought of Lilly and her family. I thought about how I have never once heard her complain, even when I went to visit her in the hospital the day before her first day of chemo in February. Like seriously, she hadn’t eaten in 24 hours and I didn’t hear her once say that she was hungry. I go more than 2 hours (and that’s pushing it) without a snack and I have a major melt down. I thought about how much strength she had when she decided to shave her head over the summer. A nine year old girl, making that decision on her own. I’m 22 and I’m struggling with that decision. I thought about how her parents must have felt when the doctor told them the news, and how amazing and strong and relentless they are.

I think of Lilly on the bad days. What does she do on her bad days? Does she have bad days? Is she scared? Because you would never be able to tell if she was from that smile on her face. I also think of her on the good days. How is she feeling today? What did she have to eat? What’s her favorite song to dance to?

Lilly is the reason I choose to be positive and not to complain. Because trust me, I could complain if I wanted to. Last week was such doody, the worst week I’ve had so far, but I’d rather not even talk about it because it’s just not worth it to me. I feel better now and that’s all that matters. Lilly has shown me to keep living my life. She continues to bowl, excel in school, dance, and laugh through all of this. Through something she shouldn’t have to go through. When I am scared, I think about what she would say. We are brave. And for this, Lilly is my pint-sized hero. She is stronger than anyone I know, braver than I could ever hope to be, and beautiful, inside and out. I wish you could all meet Lilly because you will instantly be a changed person.

So, if you ask me what I want for Christmas, the answer is a cure. A cure for all types of cancer. Or maybe not even a cure, maybe just medicines that don’t suck the life from your soul. Idk. So, I’m looking at you, the science nerds* of MD Anderson, Johns Hopkins, Sloan Kettering, and New York Presbyterian, to make my Christmas wish come true. And if you can’t do that, the least you can do is buy me a plane ticket to Thailand.

In all seriousness. I want to live in a world where no person, child, or even animal has to hear the words “you have cancer.” I want to live in a world where hospitals need to get rid of chemo chairs, not expand their oncology wings. I want to live in a world where Lilly can spend her Tuesdays with her classmates, not nurses and doctors.

And while nothing would make me happier than to hear that there is a cure for cancer in the next 12 days, I know that it’s probably not going to happen. But here’s what we can do in the meantime. We can donate to charities that support cancer research or to charities that support the families that cancer affects. I’ll make it easy for you. Since I know you all want to buy me Christmas gifts this year because I have blessed you with my beautiful writing, you can donate to UDance! UDance is the University of Delaware’s 12 hour dance marathon that takes place every year in March. And before you donate, see if the company you work for matches donations (bonus). I’ve always been passionate about UDance, but this year, things have changed. And while I will never compare myself to what some of these heroes have gone through, I can relate in some ways.

So pleaseeeee consider donating so that by the time Lilly turns 11 there will be a cure. Ok, still probably not, but a girl can dream.

Here’s the link to donate!!!!! Honestly don’t feel obligated to do it, but just think about how much money you’re willing spend at Starbucks for espresso, which by the way people, doesn’t have more caffeine than regular coffee. I digress, but just think about it. Maybe use the money you would spend on your next grande skinny vanilla latte and donate it. Or not. Whatever.

Donate here!!!!!

Also, check out this page about Lilly on Facebook to see what she’s up to –> Love for Lilly

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HOW CUTE IS SHE!!!! I NEED a tutu for my next chemo except I definitely wouldn’t look as cute

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*Disclosure: I love nerds. In some ways, I consider myself to be one. And let’s be real, nerds RULE this world. They are the smartest people on this planet. Bill Gates? Steve Jobs? Sidney Farber? Mark Cuban? Bill Nye the Science Guy? All nerds who we love. So no disrespect, you make the world go round.

7 thoughts on “The Ninth Tuesday: We Talk About My Hero

  1. You continue to inspire me and so many others. I used to donate to Udance out of obligation to Meghan’s sorority but, now I will do it with a passion because of your story. Thank you.

    Like

  2. Hi, am a cancer survivor (Non-Hodgkins) & today marks the 25 year anniversary of the end of my chemo treatments. Am sure I had much different drugs than you take.
    Many of your comments brought a smile to me as I remembered having the same feelings. Glad you are turning things into positives, even things you didnt think of before. I’m sure you will help many people in the future, most of them will be unknown & you will be surprised by the others.
    Good luck.
    Blessings & Peace,
    bob.

    Like

  3. Pingback: The Twenty-First Tuesday: We Talk About Life After Chemo | Tuesdays with Katie

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