Tag Archive for: Levine Children’s Hospital

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

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

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

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

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