Posts

Childhood Cancer Survivor Dreams to be a Music Therapist

Levine Children’s Music Therapy brought this osteosarcoma survivor a calming peace and inspired her tremendously during her fight.

Osteosarcoma Survivor Focuses on Living her Dreams

The week after Thanksgiving in 2019 Lily was diagnosed with osteosarcoma during her Senior year in high school.

Celebrating the Power of Mothers: Osteosarcoma Survivor Writes Love Letter to Her Mom

Childhood cancer survivor honors her Mom by writing a letter to her for Mother’s Day expressing her gratitude

Asking Others to Give Back For My Birthday

It’s Erin, Isabella’s Mommy… today is my birthday. Each year, I try to act like my birthday isn’t that big of a deal, but for those of you who really know me… it is. In years past it has really been a celebration that lasted well over 10 days. There were private celebrations, lunch celebrations, a girl’s trip, some kind of romantic thing – I loved it all. Maybe it is because there aren’t many times throughout the year where I feel comfortable celebrating myself. Mother’s Day? Forget about it. Christmas? I pride myself on being a great gift giver and love that. So… my birthday is the one day that I can and that is all me.

Some people have birthdays that are during the best times of the year. One of my friends has a Cinco de Mayo birthday… um, I want this. My birthday , on the flipside, is the WORST time of year. February 2nd. Groundhog Day. Also, often times falls on SuperBowl, which is hands down the worst birthday for a woman – ever. So maybe this is why I take the day on and try to make it my own.
But now that I’m a grown adult, I don’t anticipate the birthday for the gifts that I’m going to get. I don’t have that pair of shoes on the wish list for months, waiting for this day so I can unwrap them in a fancy restaurant. These days, I buy absolutely ridiculous shoes like most women – when I can’t afford them, on a bad day of work. But… it is never a regret.

So, at the ripe (and I mean ripe) old age of 43, I chose to do the responsible thing ask others to give back. The death of Madison Fedak over the holidays shook me. Like, rattled me to the core. I kept my distance from her for a long time because she reminded me so much of Isabella. Her look, her demeanor, the way that she interacted with Rachel, even the way that Sophia became so drawn to her. Then she went into remission. I let my guard down because I felt like it became safer. This little girl was going to make it and she could be one of those stories I was so happy to be a small part of.

Then, she relapsed. As a parent of a child with rare cancer, relapses aren’t good. All this work we do, all this money we try to raise… and I’m watching it take one of my favorite people I have met since Isabella died. I remember texting her Mom, while crying and apologizing that we didn’t do something fast enough for her. It was that helpless feeling all over again. This family would speak at our events and drive two hours from their hometown, if we asked, and in the end – it felt like it was all for nothing, because the dreaded story ended the same way. To be honest, I began to question what we were really accomplishing here at ISF.

But, a couple of weeks after her death, I finally had the strength to write a letter to her mom. This is a horrible club that we belong to. But sometimes, someone is sent to us and then taken away. And way too soon. But in their absence, change is made. Isabella was one of those kids, and Madison is another. While I know this doesn’t make the loss any different for her parents, I know that it will over time.

So instead of buying (those overly expensive and way too impractical shoes that seem so “fun”,) I’m asking for donations in honor of Madison. Because she is one of the reasons we are doing what we are doing here at ISF and because she was one of those kids. There was something really special and I want to honor her because she truly was so much like Isabella. That is truly the best birthday gift I can think of. We selected an Osteosarcoma trial in her honor and it’s so much more important than these shoes. Best part, it’s crazy easy to do these birthday fundraisers. Facebook targets you right around your special day and ASKS you if you want to create a charity fundraiser for your birthday. I saw it and thought, “Hell yes.”. A couple of easy clicks later, I set a goal and clicked “share”. The first night I raised over $500. I woke up to donations and smiled because I realized that maybe this is the birthday present we should all give ourselves.

…But. I’ll eventually get the shoes too. 😉

My Facebook Fundraiser

In Honor of You, DJM

Madison, I wish I could be naming all your new stuffed animals with you right now, so instead I just bought a flamingo and unicorn Squishmallow that I can hold every night. 

Madison was the kind of person that people meet once and are immediately connected to. She was a kid that impacted more in her 7 years than some people do in a lifetime. She had the sweetest voice you have ever heard. What I would do to hear, “Ms. Meredith, I love you”  just one more time.

Then I think about Laura (ironically my mom’s name), Riley (ironically my middle name), and Mickey who are the most loving, giving, selfless, and determined family I ever met in Charlotte. The kind of family I would want to have one day. How could this happen to them? 

It doesn’t make sense and we will never stop missing you, but we are taking action for you and your family. I’m on the ISF board and will be part of the team focusing on raising funds for osteosarcoma trials. We are going to make sure that we find a cure for kids like you with rare pediatric cancers — all in honor of you, DJ M. 🎶  

We used to dance to “How Far I’ll Go” from Moana every time she came into Seacrest Studios (we got some pretty incredible moves I must say so). A pretty perfect song for both of us, because there are no limits to how far I’ll go to fight for you and to find a cure for osteosarcoma. #TeamMadison and #TeamISF are behind you forever. 

Together we can help kids Beat Cancer, Grow Hair, and Live Their Dreams.

Love,

Meredith, ISF Board Member