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Fighting Pediatric Cancer: Madison’s Story

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 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!  

Madison & her Levine Care Team

Madison & Meredith

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 208 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

Cancer Journey Leads to Brotherly Bond

KJ & Dyson

When 10-year-old Dyson was diagnosed with AML Leukemia last June, he never imagined that his cancer journey would bring him a new best friend. On September 10, 2018, the lives of Dyson and KJ Brent, a wide receiver for the Tampa Bay Buccaneers, changed forever. That is the day the two first met and that led to an incredible bond and friendship.

A big supporter of the Isabella Santos Foundation, KJ wanted to be a big brother/mentor to a younger boy. KJ was paired up with Dyson through Erin Santos and Dr. Amii Steele with Levine Children’s Hospital. 

“I think it was a mix of wanting to help guide someone else and also the fact that I never had a brother either,” said KJ who is also passionate about guiding his younger sister. “This just gives me a chance to do it all over again, but with a mature, optimistic mind. And I think that mindset is perfect to mesh with a young kid going through what he [Dyson] and his family have gone through.”

We checked in with Dyson and KJ about their mentorship experience and friendship. Here are some fun highlights of their special bond and times together.

KJ & Dyson, Levine Children’s Hospital

What are some activities you enjoy doing together? 

KJ/Dyson: Hanging out at Sports Connection and Chuck E Cheese, and getting froyo!

What is a funny moment you shared together? 

Dyson: When KJ texts me animated emojis of himself!

KJ: When Dyson gave me the nickname “Cheesy.” The way it came to life was so unexpected, but he laughed so hard at it we just ran with it. Haha!

What’s one of your favorite memories together?

KJ: Every time we play arcade games. It’s always fun just walking around to each game watching the little competitiveness come out when he wants more tickets for more prizes. Haha!

Dyson: When we first meet at the hospital.

How has meeting and becoming friends benefited you both? 

Dyson: KJ makes me feel better when I’m sad and he checks in on me.

KJ: The world. The fact that I can become friends with someone in Dyson’s situation and be a big brother figure for him, talk about sports, anything he wants to is great. It’s been awesome to get closer with him and hoping we can eventually gain trust with each other to talk about life, experience life together and continue being close “brothers”!

What’s something fun that KJ and you have planned for a future visit?

Dyson:  That he goes to the SuperBowl and I get to go with him!!!

Update about Dyson: Dyson completed his last round of chemotherapy on October 4, 2018, and returned to school in January. He is now cancer-free and continues to spend time with KJ when he’s in town. 

Charlotte now has a new way to treat rare cancers

 

Levine Children’s has a new way to treat rare cancers.  In December, they opened the Isabella Santos Foundation MIBG Therapy Suite at Levine Children’s Hospital – one of only a handful in the United States.

Alexandra (center) is the first patient to receive MIBG treatment in the new The Isabella Santos Foundation MIBG therapy suite at Levine Children’s Hospital. She has neuroblastoma and has relapsed 10 times. Alexandra’s first treatment went well, and she thought it was “so cool” to be the first patient, making history and paving the way for others.

DWTS Blog #2: Why did I sign up for this again?

Written by Erin Santos, ISF Executive Director & President

Let’s back up a minute.  I realized as a talked to different people about Charlotte Ballet’s Dancing With the Stars that people had lots of questions for me about it.  Maybe I wasn’t doing a good job about communicating what I’m doing and why I’m doing it.  In it’s 7th year, the Charlotte Ballet asks 6 leaders from the Charlotte community to participate in their annual event that raises money for both the Charlotte Ballet and the charity of the dancers choice.  You are paired with a member of the company and have 8 weeks to practice a routine.  Then on March 2nd you perform in front a sold-out crowd at the Knight Theater, the one caveat is in these 8 weeks, you are asked to raise funds or “votes” with a suggested goal of $150,000.  The night of the performance, a fundraising champion is crowned as well as a judge’s choice for the best dance.  Seems easy enough, right?  Your selected charity receives 50% of your total funds raised – and for some dancers – it’s a shit ton of money.  As an Executive Director, receiving funds for ISF with no expense on the balance sheet for raising the money is your dream.  So here I am.

Right out of the gate, the dancing piece didn’t scare me.  Don’t get me wrong, that night I will shake like a leaf but honestly, I know I will get through it.  For me, the fundraising piece scares me.  The problem with selecting me as a contestant is that my JOB is asking people for money every day.  The rest of my competition probably isn’t out fundraising for a living so the ask from them may seem more rare – and therefore a little easier.  I have a very giving community of supporters from ISF who I’m hoping will see how important this is and vote for Juwan and I.  But what I’m also hoping will happen is the new visibility ISF receives in the community by being a part of the event.  People who may have never known of Isabella or what we are trying to accomplish for kids with cancer in Charlotte may come across our story and donate/vote to help us build this rare and solid tumor program at Levine.  I’m hoping new supporters and business will come out who want to support the Ballet but see the importance of what we are doing.   Crossing my fingers… also, everyone likes the underdog, right?

Right now I’m a big underdog and the competitive person inside me is struggling as I see my competition inching in on $150,000 raised.  (I’m just over $20,000) But people are telling me it’s early – so I’m counting on that.  So I continue to practice and check in occasionally on my funds raised – that isn’t moving.  But if you read about my journey and want to help – tell a neighbor, post it on your social media – email that buddy that owns a company that might make a big donation.  Anything you can do to help would be appreciated.  I’m honest with myself that I may not be the one with the fundraising trophy at the end, but I need to at least give it my all and would love any help you all can provide.  I just don’t want to embarrass myself. ☺  

Also, my competition has done a great job of filling the audience with their supporters.  I’m so grateful to those of you who are coming that night to watch.  Just seeing some familiar faces in the audience does wonders for me.  I have asked the Ballet to hold 20 tickets for me so I can get more familiar faces to the event.  These tickets are on hold until January 31st.  The event is sold out so if you want them – you have a couple of days to get them.   

Instructions on how to purchase from the held back tickets

1.    Please visit the website here and make a donation of at least $350 to equal one Gold ticket, $700 for 2 Gold tickets, etc. Once the transaction is received it will be recoded from donation to tickets.

2.    Within the guest names field please indicate “Gold Ticket Purchase” and the names of the guests using the tickets.

Now on to the dancing… or at least what kind of looks like dancing.

DAY 6

It’s freezing out.  It’s Sunday and it took everything I could do to get myself out of a warm house and head uptown.  Juwan seems stressed.  This guy dances in the ballet, goes to school, teaches classes, deals with my uncoordinated ass, has a new boyfriend and gave up drinking and social media recently.  I’ve been all over him lately about sending me the music so I can practice at home but I haven’t received it.  I can tell I’m annoying him.   Looking back, I should have been more patient because Juwan’s life makes mine look like I do nothing all week.  We are kind of snippy with each other and there is a little tension.  He takes a seat on the ground and tells me to practice my steps while he works on getting me the music.  I take a walk and realize that I’m probably pushing him because I’m getting nervous.  I also have personal stuff going on that weekend that I’m dealing with and I can feel myself swallowing the lump in my throat before I walk back in the studio.  I am not going to cry because if I do – it really has nothing to do with the music – it’s everything else that weekend.  I’m able to hold it in.  “I’m being a bitch aren’t I?” Juwan says as he comes over to me.  “Yes.  Yes, you are.”  I tell him.  I realize that we are both just dealing with shit that really has nothing to do with dancing.  A mental breakdown is brewing for us both.  We decide to lie down on the floor next to each other and talk nothing about dancing, music or the crap that is really just below the surface for both of us, and I’m okay with this.  Sometimes you just have these days.  I receive the music in my inbox the next morning at 7 am.  I love him.

DAY 7

Let’s start dancing again.  We are working on one of my favorite parts.  Juwan’s whole demeanor has changed and I can tell that both of us had a breakthrough of some kind since we saw each other last.  I’m hitting the steps.  I’m moving easier.  I’m not nervous anymore.  He asks how comfortable I am doing a stunt.  Hmmm… He shows me online and I think – okay I can do that.  He brings in a spotter.  Wait – why do I need a spotter?  Just trust me, he assures me – so I do.  And just like that, he flips me backward and I land it perfectly.  Confidence level – 10.  Okay, try it again but no spotter.  5, 6, 7, 8 and FLIP!  I land hard on the balls of my feet, in heels on the hardwood floor.  Both of my feet go numb.  I sit down instantly and he has me put my feet up against the wall.  They are tingling and I feel like I might pass out.  I look at the bottom of my feet and they are already blue.  I thought I had fractured both of my feet.  I take off my heels and slip my Uggs on – I’m done for the day.  I go home that night and watch my feet bruise from the entire sole of both feet, up the sides.  By the morning, the bruises are black.   Welcome to dancing.

DAY 8

Screw wearing heels.  This lady is back in sneakers.  The feet are tingly and a little numb but they are healing.  I’m not going to practice the flip again for a while but I assure Juwan that I’m going to master it.  I also let him know that the other trick I asked him to take out that took the skin off my ankles and gave me the massive knee bruise is back on.  If I’m going to do this thing – I’m going all the way.  My body will heal.  Juwan is in great spirits and it warms my heart to see him laughing and smiling.  He seems less stressed and I feel what little maternal instincts I have bubbling to the surface, wanting to take care of him but also knowing that maybe just by being a little better today in practice could help a little.  I’m hitting steps, I’m sliding on the ground (doing the move that once rattled me), and I’m hitting the mark.  “Look at you girl!  Knowing these moves!”  I shrug him off but I feel good knowing I’m making a little bit of progress.  We are a little ahead of schedule and I know I have 5 weeks to clean it all up.  I think I’m going to pull this thing out… if my body and my mind can hold it together.  Oh, and I’m starting to have fun.  Look at me.  Who knew?

Erin’s DWTS Blog #1

Event site: gala.charlotteballet.org

Isabella Santos Foundation Sees Significant Results in 2018

CHARLOTTE, N.C. – Jan. 22, 2019 – This past year, the Isabella Santos Foundation (ISF) continued to make great strides in the local and national pediatric cancer community.

The most significant development was the creation of a leading-edge rare pediatric cancer treatment room at Atrium Health’s Levine Children’s Hospital. This is one of the leading MIBG Therapy Suites in the nation and is slated to change the landscape of local cancer care. ISF completed its $1 million commitment to build the treatment room which will be used to treat children with neuroblastoma and in advanced clinical trials to test new products on different types of cancers. Construction began mid-2018 and was completed in eight months. The first patient was successfully treated there in December. More information is available at http://bit.ly/MIBGTherapy.

Among the $672,000 that the Isabella Santos Foundation donated to their mission of fighting pediatric cancer, $600,000 was given to Atrium Health’s Levine Children’s Hospital and $30,000 went to The Genomics Department at Nationwide Children’s Hospital to help fund the Neuroblastoma Killer Cell Trial. Additional funds were supplied to local Charlotte organizations that support kids and families fighting pediatric cancer.

Another significant mark ISF made, was partnering with Community Blood Center of the Carolinas to open CBCC’s first blood center in South Charlotte. Named in Isabella’s honor, the Isabella Santos Center is a state-of-the art blood center located in Ballantyne.

In addition, Erin Santos, executive director of and president of ISF, was named the Housing Opportunity Foundation’s “2018 Humanitarian of the Year” and was recognized among The Charlotte Observer’s editorial board among those who “made Charlotte better in 2018.”

This year, ISF is committed to raising $5 million to fund the ISF Rare and Solid Tumor Program at Levine Children’s Hospital. This breakthrough program is designed to research and treat a wide range of deadly pediatric cancers, and will allow the hospital to expand their clinical trials and recruit a national expert in rare and solid tumors.

“We are extremely proud of our results and the impact we made on the pediatric cancer community in 2018,” said Santos. “We are very grateful for our tremendous base of volunteers, supporters, partners and staff for helping us achieve these incredible accomplishments and improve the lives of countless childhood cancer patients.”

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for rare pediatric cancers, and charities that directly impact the lives of children with cancer. ISF was founded in honor of Isabella Santos from Charlotte, N.C. who lost her battle against neuroblastoma. ISF is committed to improving rare pediatric cancer treatment options in an effort to increase the survival rate of kids with cancer so they can live their dreams. ISF has donated over $3 million to date to expand the scope of pediatric cancer research and treatment, and to fill various needs surrounding childhood cancers.

For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation), Twitter (www.twitter.com/TheISFoundation) and LinkedIn (https://www.linkedin.com/company/isabella-santos-foundation/)

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CONTACT:

Jenni Walker – Walker PR Group – 980-339-8041-office/704-649-6571-cell

jenni@walkerprgroup.com