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Through My Eyes:  Cancer Family Finds Light During Daughter’s Neuroblastoma Journey

“Through My Eyes” is a series in which those affected by childhood cancer share a behind-the-scenes look into the ripple effect cancer has in their lives.

Team Happy Feet Rare Pediatric Cancer Campaign: #BlastAwayNeuroblastoma

Isabella Santos Foundation Intern teams were challenged with creating a 7 day social media rare pediatric campaign to help raise awareness.

3rd Annual Isabella’s Birthday Wish Fundraiser

We featured Brinn and her family during our September Through My Eyes Campaign, learn more about Brinn’s cancer journey.

Isabella (L), Brinn (R)

It’s our 3rd annual Isabella’s Birthday Wish Fundraiser and we can’t think of a better gift than to honor another child’s wish on what would have been Isabella’s 15th birthday in the month of March.

We are excited for one of our cancer warriors, as she heads to Disney World to meet Minnie!  Brinn Andrew, 2 ½ years old, is coming to the end of her neuroblastoma treatment plan and continues to thrive. What better way to celebrate than to head to Disney with her family!

Over the last 2 years, you have helped bring so much happiness to kids like Sydney and Madison.

If Isabella were here today, we know it would be her wish to pass this experience on to another cancer fighter. Make-A-Wish granted Isabella her wish to go to Disney and gave her the most joyful days of her life. Help us do the same for a kid like Isabella and Brinn.

Donations of all values will allow us to collectively reach our $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish. 

FEATURED WISH CHILD:

  • Wish Kid: Brinn
  • Age: 2 ½ 
  • Illness: Neuroblastoma
  • Wish: Disney World to meet Minnie
  • Favorite Things: Brinn is a daddy’s girl and loves all things pink, sparkles, and anything girly! She also loves Minnie Mouse and bunnies (she has a TON of stuffed ones😊). Lucky Charms and waffles are her favorite food.

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

Neuroblastoma Patient Successfully Completes MIBG Therapy in Charlotte

Another patient was successfully treated in the Isabella Santos Foundation MIBG therapy room at Levine Children’s. As a child and family enter MIBG treatment they receive a gift basket specifically paid for by last year’s ISF MIBG Ambassador fundraising efforts. Patients stay in the MIBG room 3-7 days after they receive their injection with parents/caregivers in the adjoining room, so our hope is that these baskets help bring a little comfort in their time away from their own home.

If you look closely at the note, this MIBG basket is thanks to Tim McBride… also known as McBeast! Thanks to Tim and his supporters, we were able to provide a few comfort items, snacks, toys and gift cards for food, gas, coffee, and more. 

Levine Children’s Hospital is 1 of 20 hospitals to have a MIBG Treatment room in the U.S. and the only location in the Charlotte region. The two-room MIBG suite provides targeted radiation to pediatric neuroblastoma patients with minimal side effects. This therapy impacts kids fighting cancer beyond the greater Charlotte region and will eventually expand to include adults with rare tumors.