Tag Archive for: pediatric cancer

Charlotte’s unsung heroes: They made Charlotte better in 2018 (Part 2)

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Originally published by The Charlotte Observer Editorial Board

Erin Santos with her daughter, Isabella. Santos has responded to Isabella’s death by helping others in similar situations. ANGELO MERENDINO

Each year, the Observer editorial board searches for heroes among us who make our city and region better. This year, we’ve found people who’ve made the most of a second chance, helped dads connect with children, helped students explore and forever changed treatment of cancer in Charlotte. (We published our first two honorees yesterday.) To them, and to all who make our community better, we say thank you!

Reimagining pediatric cancer care in Charlotte

Charlotte’s Isabella Santos was 2 years old when she was diagnosed in 2007 with neuroblastoma, a rare cancer that mostly afflicts very young children.

Her parents couldn’t get the treatment they needed for her in Charlotte. So they took Isabella to Sloan Kettering in New York and to Children’s Hospital of Philadelphia to try to save her life.

 

Even as they cared for their daughter, they quickly created the Isabella Santos Foundation to raise money to fund research at Sloan Kettering for a cure. At first it wasn’t much – they raised $7,000 at their first 5K race in Ballantyne.

But Isabella’s mother, Erin Santos, quit her job at Lending Tree to work on the foundation full time, and she changed the focus. She had had the resources to take Isabella around the country, but she knew other families didn’t, with deadly results. They needed world-class treatment in Charlotte.

So Erin stopped sending money elsewhere and instead worked with Levine Children’s Hospital to treat neuroblastoma here. The foundation raised $1 million last year and $1.4 million this year. It used part of that money to partner with Levine to build an MIBG treatment room, one of fewer than 20 in the country and arguably the best.

Erin Santos and the Isabella Santos Foundation have forever changed treatment of neuroblastoma in Charlotte. But they’re not content to stop there. They have pledged to raise $5 million over five years to have Levine build a rare and solid tumor program that would treat about 15 different rare cancers. It would be the only one of its kind in the country.

Isabella Santos died in 2012 at the age of 7. But her life, through the work of her mother Erin, will benefit others for generations.

First MIBG Therapy Patient Paves the Way at Levine Children’s Hospital

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On this beautiful Christmas Eve morning, we received texts and emails letting us know the first MIBG patient in the new ISF MIBG suite at Levine Children’s has been discharged after a successful admission! This puts a bow on 2018 for us… our hearts are overflowing. Merry Christmas to everyone who helped make this a reality.

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

Now, Alexandra is glad to be spending Christmas at home with her family, complete with movie nights (Disney and popcorn – her favorite!) and continuing to reach for her dreams: being on Broadway.

More details about the ISF MIBG Therapy Suite at Levine Children’s.

Max – The Mighty Cancer Warrior

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Max the mighty cancer warrior

Max is a neuroblastoma warrior. The energetic and active three-year-old has been fighting high-risk Stage IV Neuroblastoma since August.

His diagnosis came as a complete surprise to his parents, Dianna and Roger, who say that Max was the healthiest and wildest kid you’d ever meet. 

Max sometimes complained about knee pain and then his eye started getting puffy. Then one day, his eye looked black and blue and got worse. Then the other eye turned yellow and started to bruise. Knowing something was off, Max’s parents took him to the doctor for blood work.

The results showed cancer, so his pediatrician called Dr. Oesterheld at Levine Children’s Hospital, where Max was admitted immediately. It was there that Max and his parents became part of the LCH family under the great care of Dr. Oesterheld and an amazing team of nurses and other medical professionals to begin a long and rigorous treatment process.

Max’s Treatment

The primary tumor is on Max’s liver, on two lymph nodes on his abdomen, and his eye. He recently had 30 percent of his liver removed, a resection surgery to remove his tumors, and received his sixth round of chemotherapy. He has also had 11-12 blood transfusions and four platelet transfusions since August. 

Max the mighty cancer warrior

Max still has bone cancer on the entire top of his skull, right upper arm, pelvis, spine, and legs. His treatment is being pushed back three to four months, because his cancer isn’t quite ready to move forward with the original treatment plan, which would include a high dose of chemotherapy and stem cells. He may end up needing MIBG Therapy. 

“I would never want anyone else to have to go through this,” said Max’s mom, Dianna. “It’s very scary, but we are very grateful to the amazing team at Levine Children’s Hospital who are like a second family.”

Max is part of DFMO drug study at LCH to help prevent relapse of neuroblastoma. As part of the study, he takes a chemotherapy pill at home. Fortunately, it doesn’t add any additional side effects or toxicity. 

Max bounces back between treatments and enjoys his time at home in Montgomery County where he and his family have a hobby farm. Max’s best friend is his chicken named Pumpkin who is like a dog in the way he plays with him and follows him around.

Pediatric Cancer Funding

Max receiving treatment at Levine Children’s Hospital

It wasn’t until this summer’s shocking news that Dianna realized how much funding is needed in the pediatric cancer field.  Since Max’s diagnosis, his parents have become passionate about raising awareness and funding for pediatric cancer and supporting local hospitals like Levine Children’s because they don’t turn people away. 

Adds Dianna, “These hospitals are like angels doing everything they can do to give all these kids a fighting chance. My new mission is educating people about rare childhood cancer. No baby, three-year-old or teenager deserves to die because there is not enough money to save their lives. I will do whatever I can to make a difference.”

If you are interested in helping support Max during his treatment to assist with medical expenses and gas cards for their two-hour trip from Montgomery County to Levine Children’s Hospital, please email Dianna at dianna.lariviere@gmail.com to her PayPal. 

Max and his pet chicken Pumpkin

Max, Cancer Messed With the Wrong Kid

Max and Santa

Housing Opportunity Foundation Names Erin Santos as 2018 Humanitarian of the Year

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Erin Santos, 2018 Humanitarian of the Year

Charlotte, N.C. – More than 400 Realtors® gathered Friday, Dec. 14, 2018, at the Crowne Plaza Charlotte Executive Park for the Charlotte Regional Realtor® Association/Carolina Multiple Listing Services, Inc. (CarolinaMLS) 2018 Holiday Awards Luncheon & Annual Meeting.  Members paid tribute to outstanding real estate industry leaders and association volunteers, as well as recognized the 2018 Housing Opportunity Foundation Humanitarian of the Year Erin Santos, founder of the Isabella Santos Foundation.

Erin and Stuart Santos established the Isabella Santos Foundation to raise awareness and funding for research and a cure to neuroblastoma, a rare and aggressive form of childhood cancer that ended the young life of their daughter, Isabella. During Isabella’s five-year fight against neuroblastoma, she received much of her care at Levine Children’s Hospital.  However, a number of the clinical trials and advanced treatments she required necessitated travel to larger children’s hospitals in other parts of the country.

While the Santos family had the option of seeking treatment elsewhere, they understood that there are many families who cannot travel. Children with rare forms of cancer and their families need a tremendous amount of support to stay in the fight.  But sadly, a critical lack of funding to research and treat these cancers is often not available locally, which is why the Isabella Santos Foundation was formed. As stated in her nomination, Erin Santos wanted to do something that would permanently transform pediatric oncology in our local community, and therefore the foundation grew.

Because of Erin’s vision and drive, the Levine Children’s Hospital and the Isabella Santos Foundation have partnered together to launch the Isabella Santos Foundation Rare & Solid Tumor Program with the goal of offering the most effective and comprehensive treatment available for rare cancers.

  • This life-saving program is the first of its kind in the nation.
  • The program will treat approximately one-third of the 135 new cancer patients at Levine Children’s Hospital who are treated each year.
  • A vital component of the program is MIBG Therapy, a targeted radiation treatment with minimal side effects.
  • Under the unwavering dedication and inspirational leadership of Erin, the foundation has concluded its $1 million MIBG building campaign.  The MIBG suite construction has been completed and is slated to begin serving its first patient by the end of the year.
  • Levine Children’s Hospital will now be one of only 20 hospitals in the country to have an MIBG treatment room.

For nearly 10 years, the Isabella Santos Foundation has been a driving force in increasing awareness and has donated over $2.5 million in funding.  Under Erin’s guidance and direction, the foundation hosts several special events throughout the year. Most notable among these is Jersey Mike’s Day of Giving, which involved 31 Charlotte-area stores giving 100 percent of proceeds from the day to the foundation.

“Erin has taken the unimaginable pain from the loss of a child and created something remarkable!  She truly embodies the spirit of this award,” said Association/CarolinaMLS President Jason Gentry. “The Isabella Santos Foundation’s contributions to our local community have made a tremendous impact in an effort to ensure that other families now and in the future don’t have to endure the same type of loss. Her unwavering commitment should serve as an inspiration for us all to do more to effect change.”

As the Housing Opportunity Foundation’s Humanitarian Award winner, Erin Santos received a commemorative crystal award and the ability to designate a charity of her choice to receive $5,000 from the foundation. The Isabella Santos Foundation will be the recipient.

About the Housing Opportunity Foundation
The Housing Opportunity Foundation is the charitable arm of the Charlotte Regional Realtor® Association.  The foundation works to create a community where all housing needs are met, and its mission is for Realtors® to create housing opportunities through advocacy, education, funding and leadership.

For more information, about the Association or the Foundation visit www.CarolinaHome.com. For interviews, please contact Kim Walker.

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The Value of Time

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Written by Erin Santos, Isabella’s Mother

Isabella Santos Foundation MIBG Therapy Suite

In less than 3 weeks, a new year starts for us all.  Personally, I love the upcoming New Year because I’m all about restarting.  I look back on this last year and it seems like a blur to me.  It happened so fast but at times seemed to drag along.  We set big goals for ourselves as a foundation and boy did we learn a lot.  Construction started the Isabella Santos Foundation MIBG Suite and we watched in amazement as Levine Children’s Hospital quickly held up their end of the deal and knocked out a world-class cancer therapy suite in less than 9 months.  The monthly updates and tours energized us as we plugged along different events, reminding donors of what was happening in their hometown thanks to their donations.  Levine Children’s was holding up their end of the deal, so we had to do the same.  Each Tuesday, our team would meet and walk through the numbers, wondering if we were going to be able to present them with another $100,000 – and many months we did.

In late November, the ISF MIBG suite was nearing completion and I found myself getting extremely emotional in meetings.  Not to say we haven’t done big things before, but this was different.  This wasn’t a tree planted in her honor or a check sent to a hospital to fund a portion of a childhood cancer trial.  This was an immediate impact and I knew there were families fighting for their child and waiting for this ribbon to be cut so their child could receive this treatment.  It became so real all of a sudden.

Isabella receiving MIBG therapy in Philadelphia

This was also the first time that we did something that wasn’t promising a cure and as a team, we had to be okay with that.  I sent my entire team the journals I wrote during Isabella’s relapse that lead us to MIBG treatment in Philadelphia.  I wanted them to read what it was like from the perspective of a mother, who knew in the end – this may not cure their child.  I was realistic and knew this cancer treatment was doing… it was giving her time.  I didn’t really grasp what that meant back in 2011 because we were always hoping for more time.  We kept telling ourselves that a cure was right around the corner and if we could just keep her alive a couple of more months, some trial would open up that would be the magic we were looking for.  But for us that never happened.  Instead of bringing us to a cure – it gave us a Halloween we shouldn’t have had, a Christmas with a healthy child and a 7th birthday she never should have seen.  10 months.  It gave us 10 more months – and that time was priceless.

She was 6, going on 7 and in these years she was developing into who she was going to be.  She forged friendships and character traits that I will always remember.  Time with all those new friends and valued time with family members that they will always cherish.  In the end, it didn’t save her – but sometimes time is just as valuable as a cure.   It was for us.

I would sit in these meetings at the hospital and hear about the possibility of patients coming by the end of the year to receive this therapy here in Charlotte thanks to our donation.  I knew the first couple of stories may not be the ones you want to hear, and I was afraid this room would not seem like a success to you.  I wasn’t sure if our donors were going to understand the importance of time.  Sure, there will be stories talking about moving the needle for pediatric cancer survival rates and I can’t wait for those.  But they will take time.  Both stories are valuable and I found myself being overcome with emotion about the possibility of providing this to the kids and families fighting cancer in Charlotte and beyond.  It’s absolutely incredible.  Think of what you are giving to these families.

Erin Santos giving the first tour of the Isabella Santos Foundation MIBG Therapy Suite

The night of the ribbon cutting, I wanted to give the first tour.  I took my family up to the room and found myself giddy about it.  You would think I was about to show them some masterpiece I had painted.  Kind of silly really.  These two rooms connected by a lead door and a yellow tinted piece of glass.  A room wrapped in plastic that looks kind of scary but a look up to the ceiling provided a view of stars and planets with even a shooting star they could wish upon.  A killer AV system that keeps kids entertained while the medicine blasts away their cancer and the large painting of Isabella hangs in the corner reminding us all how we got here.  All I kept saying was I hope people really “get it”.  This room will change lives for people… and I’m not really sure how many things you get the opportunity to support that does something at this magnitude, but this is big.

Erin Santos giving the first tour of the Isabella Santos Foundation MIBG Therapy Suite

So now we close up the year with the hopes of watching the first patient start receiving treatment in 2018.  I’ll say a little prayer and cross my fingers – hoping what we all did is something that changes fate for a kid fighting.  I know it will.  I just hope all our supporters understand how unreal this is and how it’s just the beginning of what we are building here in Charlotte and 2019 is in our sights.  I know for myself, this year is going to be one of the best years of my life.  I’ve surrounded myself with an amazing team, friends who support me and family who I have never been closer to.  I’m the happiest I have been in years and I’m excited to think of what you can accomplish when you have happiness, love, and support in your life.  The possibilities are endless.

Connie, Erin’s Mom, poses in front of Isabella Santos Foundation MIBG Suite

This room that we have worked so hard to build is open, and when one door closes – another one opens.  We have a 5-year, 5 million-dollar commitment to Levine Children’s and kids fighting cancer staring us in the face on January 1st.  The first Rare and Solid Tumor Program of its kind in the country will start forming as we fund a new team of top doctors, researchers, nurses and more.  Our goal is to take this last month of the year and push ourselves to make the first $100,000 installment towards this commitment.  Here at ISF, we like to exceed expectations and we hope that after watching what we did with your help in 2018, you will want to be along for the ride for years to come as we make history here in Charlotte.

Every single donation makes a difference… and we hope this last year showed you how very true this is.

Click here to make your year-end donation and help us kick off our first $100,000 installment towards the Isabella Santos Foundation Rare and Solid Tumor Program at Levine Children’s Hospital. Be part of changing childhood cancer care in Charlotte and beyond.

Thank you for being part of the Isabella Santos Foundation family. We look forward to achieving even bigger things for kids fighting cancer in 2019!

Isabella Santos Foundation: (L-R Top) Rachel Wood, Karen Murphy, Kerry Winslow (L-R Bottom) Erin Santos, Tia Wackenhagen, Maitland Danner