Isabella Would Have Been 14

Written by Erin Santos, ISF Executive Director & President

6 years ago you couldn’t pay me to sit and have coffee with a little girl who beat cancer and was also Isabella’s age.  No Thank You!  But time has passed and now I find myself being eager to be in the presence of 13 and 14-year-old girls.  I’m constantly wondering what they are into, how they behave and what they say.  So when I got the opportunity to meet Sydney, who beat cancer last year I was excited about our meet and greet.  Side note, we also helped fund her Make-A-Wish trip to go to London for the ultimate Harry Potter experience.  Another side note, Sidney’s sister was in Grant’s preschool class at Calvary when Isabella was diagnosed and fighting.  We had no clue at the time of raising funds for her trip that it was for a girl who we once had this connection with. Full circle.

This girl was precious… like beyond precious.  She was beautiful and mature and wise beyond her years.  I find these are all traits of a child who has stared death in the eye more than once.  I couldn’t stop listening to her talk and was consumed with the fact that she let her mom dote on her and play with her hair while she talked to us.  Any other teen would have swatted her Mom’s hand away.  But I feel like Sydney allowed it because she knew her Mom too went through something and knows she is lucky to be alive.  

I loved listening to her talk about the doctors and procedures and how it really felt to go through all her treatment.  And then I asked the question, “So what do you want to be when you grow up?”  Such an innocent question but as she answered, I felt a lump in my throat and the tears beginning to swell.  So jealous that she can answer this question and how I craved being able to ask it of my own daughter.   No matter how much I try to hide the pain, this family knows that no longer how much time has passed or how good I say I’m doing now – they really are the lucky ones.  They are in fact sitting with a Mom who should have a daughter sitting along with us.  Who knows, they could have even been friends.

Sydney immediately came to my side and put her arms around me and started to cry.  It was so touching to me.  I don’t know if she was crying because she was sad for me or sad for Isabella or wondering how she survived and Isabella didn’t.  It could have been a number of things but I have to say that it has been years since someone touched me in that way.  The hug lasted a long time.  For those of you who know me – that means it was over 5 seconds.  But his hug lasted for minutes.  I tried to release her but she wouldn’t let go.  It was if she knew I needed it.  She was right.

I don’t know what Sydney’s life has ahead for her, but I know it’s going to be amazing.  I’m excited to sit back and watch because this girl deserves every single minute of it and I know she will live it not only for her and her family but for some of those who didn’t get the chance to live it and I love that.  It makes me think that while some weren’t meant to survive, she is one that was meant to live.   Isabella’s birthday is in March. We can’t think of a better gift than to honor another child’s wish in honor of Isabella’s life. 

It is our goal to raise $6,000 in 14 days for what would have been Isabella’s 14th birthday.  14 years old… just like Sydney. Last year, you helped us make Sydney’s wish to visit the Harry Potter museum in London come true.  Sidney has finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018 at Levine Children’s Hospital signifying the beginning of living life cancer free.

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  Sydney and her family experienced the same.

We hope you will help us pass this on yet again. Please donate to help another child’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal and will be gifted to the Make-A-Wish foundation to go towards a child’s wish.  

Isabella’s Birthday Wish Fundraiser

Isabella’s birthday is in March. We can’t think of a better gift than to honor another child’s wish in honor of Isabella’s life.  It is our goal to raise $6,000 in 14 days for what would have been Isabella’s 14th birthday.

Last year, you helped us make Sydney’s wish to visit the Harry Potter museum in London come true.  Sydney is currently 14 years old, finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018 at Levine Children’s Hospital signifying the beginning of living life cancer free. Isabella’s mom, Erin, recently sat down with Sydney to hear all about her trip.

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  Sydney and her family experienced the same. We hope you will help us pass this on yet again.

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

Episode 160: The Audacious Goals of the Isabella Santos Foundation

We sat down with Erin and Rachel of the Isabella Santos Foundation to learn more about the organization,  how it has grown and what the future holds for it. We also learned the history of Elizabeth College and recorded the worst supportive words of all time.

To listen to the full episode go here.

The Charlotte Podcast: The Audacious Goals of the Isabella Santos Foundation

Originally published on The Charlotte Podcast

Episode 160: The Audacious Goals of the Isabella Santos Foundation

We sat down with Erin and Rachel of the Isabella Santos Foundation to learn more about the organization,  how it has grown and what the future holds for it. We also learned the history of Elizabeth College and recorded the worst supportive words of all time.

Fighting Pediatric Cancer: Madison’s Story

Madison & her Care Team

After almost a year ago of being diagnosed with osteosarcoma, a rare pediatric bone cancer, Madison received the news she has been fighting so hard to hear at her 3 months scan yesterday from Dr. Oesterheld. SHE BEAT CANCER. Madison will continue to have maintenance scans and therapy on her leg, but was able to ‘Ring the Bell’ at Levine Children’s Hospital signifying the end of her treatment and beginning of living life cancer-free!

After several rounds of chemotherapy in 2018 to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. If you are familiar with Madison’s story (posted below), you will remember her parents promised her a puppy to help motivate her to learn to walk again.  And just a few weeks ago Oakley, a black Goldendoodle, came home with her!

Madison & Meredith, Program Director at Levine’s Seacrest Studios

Madison was full of giggles and smiles all afternoon. Here she is pictured with some of her Levine Care Team who she adores! And with Meredith, Levine’s Seacrest Studios Coordinator, who naturally showed up in a unicorn onesie to celebrate.  We don’t want to miss giving Dr. Oesterheld credit for wearing pink and unicorn socks for the occasion!  Levine’s Doctors, Nurses, Child Life Specialists, Staff… and yes dancing Seacrest Studios Unicorns are simply the best. The. Very. Best.

Madison has so much to look forward to as her family just learned she gets her Make-A-Wish trip to L.A. to visit Duff Goldman of Kids Baking Championship.  How cool would it be to say… ‘I hung out with Duff’.  ‘I baked a cake with Duff’. ‘Yup, Duff and I are BFFs.’  We are beyond excited for this little baker and can’t wait to see more from their trip.

Congratulations Madison, we are so proud of all your hard work and determination! And thank you to everyone at Levine’s for everything you do for Madison and other kids fighting cancer!  

Congratulations Madison, we are so proud of all your hard work and determination! And thank you to everyone at Levine’s for everything you do for kids fighting cancer!  

MADISON’S STORY (Recorded September 2018)

BIG HEROES COME IN SMALL PACKAGES  (Blog post published October 2018)

Madison and mom Laura

Madison was diagnosed in April of 2018 with osteosarcoma at age five. After several rounds of chemotherapy to shrink the tumor on her femur, she had surgery to remove her right femur and replace it with one from a cadaver. Fortunately, the medical team was able to remove most of the tumor and save both of Madison’s growth plates. She continues to receive chemotherapy and recover from her surgery. Once Madison gets the green light from her doctors to be more mobile, she is determined to learn to walk again so she can earn a super cute bribe from her parents – a Golden Retriever puppy. 

A Community of Support

Madison and her family live two hours from Charlotte in Scotland County. She and her mom make the drive each week to Atrium Health’s Levine Children’s Hospital where Madison receives in-patient treatment Thursday-Saturday. They then return home for four days to be with their family – Madison’s dad, Michael, and big sister, Riley – and where Laura teaches three days a week. 

“Madison’s diagnosis has changed us all,” says Laura. “Michael and I have to raise each of our daughters as single parents during the days when we are in Charlotte for treatment. The hardest part is not being together under the same roof. We are very grateful for the great friends we have made through this journey. You realize you can’t do this alone so you learn to rely on support from others.”

Team Madison

For the remainder of the year, Madison will be homebound where she loves to cook, bake, do crafts and make “how-to” videos on her mom’s phone. When she finishes chemo in December, she’ll resume her favorite activities including dance classes, swimming and learning how to ride her bike.

Chef Madison

In January, she will start kindergarten at the school where Laura teaches and where they already have a tremendous community of support. Faculty and students have created “Team Madison” in honor of Madison for the American Cancer Society’s Relay For Life of Scotland County. Laura and Madison stay busy supporting the team. It all started with their Levine Children’s Hospital life coach bringing them some beads to make necklaces and bracelets. From there, Laura and Madison started making “Madison’s Hope Rope” key chains that they give to patients at Levine Children’s Hospital and sell to raise funds for their Relay For Life team and other cancer organizations. 

“Madison is our hero and is such an inspiration,” says Laura. “She’s such a good kid and is all about wanting to help other people. Even though she’s five, she’s changing people’s lives.”

Madison and sister Riley