Lake Norman Forest Run Benefiting the Isabella Santos Foundation

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LAKE NORMAN FOREST RUN  |  HALF MARATHON & 5K  |  JULY 28, 2018  |  7:00AM- 11:00AM

Excited to add this to our partner event list! Announcing the Lake Norman Forest Run on July 28th benefiting the Isabella Santos Foundation, race 1 of the Lake Norman Half Marathon series by Epic Sports Marketing. Mostly in the shade on the well paved roads of Lake Norman State Park, this run has a half marathon and a 5K option.

Details – http://www.lakenormanforestrun.com
Register – http://tinyurl.com/yb4rpz5p

The Sound of a Train at Night

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Written by Erin Santos, Isabella’s Mom

It’s June.  Let’s just acknowledge it.  

Different months mean different things to us here at ISF.  Some months mean big events – and even bigger anxiety – like our September race or our spring coffees.  Other months are spent answering emails, scheduling meetings, honoring appearances, or trying to navigate the demands of the foundation. June is always different, though,  because we never really know what this month will bring.

For me, June always begins as a crazy whirlwind of  “Oh God, it’s the end of school”, as I frantically try to present myself as Mom of the Year until the day the kids exit the bus for the last time.  This particular June has been abnormally crazy, with the addition of a desperate search for Jake, Isabella’s cat who left one night after a work meeting at my house.  Jake – an inside/outside cat who loves to party at night – would always be waiting at the back door each morning to come in for cuddles. Three weeks ago, he went to party and never came back.  We are all in denial that he is gone. His food bowl is still sitting out in our house, full. The kids are devastated and I’m blocking out all the emotion that comes with how we got this cat, what this cat meant to her, and what this stupid cat means to me.  Sophia says he is finally with Isabella again but I just laugh it off because I can’t wrap my head around that.

Last week, I found myself in Mom of the Year mode again and took my kids to a Knight’s Game uptown mid-week. Grant was so exhausted, he completely fell asleep on me for an hour at the ballpark and I realized instantly that I overbooked us. As I drove us home later in the dark, I decided to take a better exit with more lighting.  Then it happened… we were hit from behind and smashed into a 5-car pile up. Surprisingly, we all walked away from a totaled car without a scratch on us. The truck that hit us from behind practically came through my backseat where Sophia was sitting. But other than a weeklong headache and a car that was being sold for parts – it was as if it never happened.  Grant graduated elementary school the next morning and I sat there, not allowing myself to think how different that morning could have been if we hadn’t been wearing seatbelts or if the teenager hit us at a different angle. In traditional Erin fashion, I pushed all those thoughts aside. It’s just another crazy June, just another thing.   

But there have also been things that have happened that I can’t push aside. A few nights ago was no exception.  I was asleep in a dark room when I heard it – the sound of a train passing closely by. I’ve heard this noise many times before. Generally, it just startles the shit out of me before I fall back asleep.  But this time the sound instantly conjured up a hundred images in my mind as if I’m living in a movie. And it suddenly launched me back to 6 years ago. Into a pitch-dark room. With her.

We were at the Grand Floridian because Mom of the Year thought it was smart to take a severely sick, dying child to Disney World.  She was skin and bones at this point and was losing her vision due to the brain tumor. So each day as our group headed out to take Grant and Sophia to the parks, I would pull the dark shades and crawl in bed next to her.  The hotel was silent because everyone was where they were supposed to be… out enjoying themselves and the sunshine. But she and I would just lie there, silently breathing together. The only sound we would hear was the monorail train coming in and out of Magic Kingdom every 15 minutes.  The room was so dark we couldn’t see each other but I could feel her against me. I would never sleep because I was too busy taking all of her in. Every breath, every twitch, every single train that would come and go. Hours would pass and I would just cry silently – trying hard not to wake her.   And just when I would feel my mind becoming tired enough to sleep, the train would come.

Ever since that June night just a few sleeps ago, the one that brought back Disney, I realized something different is happening. I’m remembering more. I don’t think it’s that I necessarily want to, but somehow these thoughts are elbowing their way in . Maybe it’s because I’m home alone and my mind has time.  Maybe it’s the combination of the cat, or the the car accident, and the silence in the house. All I know is that this stupid train has me thinking again and it’s tough. How can one sound do that to you? One simple, normal sound.

Since I’m finding I can’t push these thoughts aside, the only decision I can make is to take it all in over the next two weeks. To allow this train to throw me into memories I don’t want to have. Unless I somehow muster up the strength to realize it’s just a train. And move on.

Welcome to my June.

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It started with a girl.  And she is changing the world.  June 28th will mark the 6th anniversary of Isabella’s passing.  Please help us near and far keep Isabella’s legacy alive.  

Platelet Drive in Memory of Isabella Santos – June 21-28

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CHARLOTTE, N.C. – June 13, 2018 – One hundred platelet donations in memory of Isabella Santos. That’s the goal for the week-long platelet drive that the Isabella Santos Foundation is hosting with Community Blood Center of the Carolinas from Thursday, June 21-Thursday, June 28.

The platelet drive is being held on the sixth anniversary of Isabella Santos’ passing to celebrate her life and legacy. She passed away June 28, 2012, from a five-year battle with neuroblastoma, a rare type of pediatric cancer. During her treatment, she received several blood and platelet transfusions. According to CBCC, cancer patients are the No. 1 recipients of blood products. One local children’s hospital alone requires nearly 300 units of red blood cells and more than 100 units of platelets each month.

“Community Blood Center of the Carolinas has been near and dear to our hearts since Isabella received numerous blood and platelet transfusions to help her stay strong and fight neuroblastoma,” said Erin Santos, executive director and president of the Isabella Santos Foundation. “Hosting this platelet drive is an impactful way we can honor Isabella’s legacy and support local patients who need lifesaving platelets and blood products.”

Those interested can donate platelets at any of CBCC’s five donation centers in Charlotte (4447 South Blvd.); Concord (363 Church St. North); Gastonia (2524 E. Franklin Blvd.); Hickory (2217 Highway 70 SE); or Greensboro (616 Pasteur Drive). Those not able to donate platelets can give whole blood in honor of Isabella at any of CBCC’s donation centers. Appointments are required for platelet donations. To make a platelet donation appointment, email plateletdonor@cbcc.us or call 1-888-59BLOOD and use group code Isabella.

In addition, Jersey Mike’s will provide cookies to all presenting donors at CBCC’s Charlotte Donation Center on June 28 to thank the donors and celebrate Isabella with something sweet.

“ISF is the manifestation of Isabella’s legacy of community support and caring,” said Martin Grable, president and CEO of CBCC. “We deeply appreciate the relationship that has developed of the years. Partnering with such a determined and tremendously successful group of people dedicated to raising awareness of rare childhood cancer and what can be done about it makes our work at CBCC even more rewarding.”

About Community Blood Center of the Carolinas

Community Blood Center of the Carolinas is the local nonprofit, community-based blood center and the primary blood supplier to the region’s hospitals. CBCC collects blood and blood products from volunteer donors in the community to return to the community at the lowest possible cost consistent with the highest possible standards. CBCC is a member of America’s Blood Centers, North America’s largest network of community-based, independent blood centers that provide more than 50 percent of the nation’s blood supply. For more information, visit http://www.cbcc.us/.

For more information on hosting a blood drive or donating blood in your area, visit www.cbcc.us or call 1-888-59BLOOD.

Follow Community Blood Center of the Carolinas on Facebook http://www.facebook.com/BloodCenter, on Instagram https://instagram.com/cbccarolinas/ and on Twitter www.twitter.com/CBCCarolinas.

About Isabella Santos Foundation

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for neuroblastoma, other 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 works to improve rare pediatric cancer treatment options in an effort to improve the survival rate of kids with cancer. For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation) and Twitter (www.twitter.com/TheISFoundation).

CONTACT:

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

jenni@walkerprgroup.com

MIBG Construction Update #2, Levine Children’s Hospital

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Our day is made when we receive MIBG treatment room construction updates from Nurse Dawn, Levine Children’s Hospital MIBG Therapy Program Director!  This is really happening… look at the ISF MIBG sign that labels the suite!  Steel beams will be going up next and the lead brick walls will be installed in about 4-6 weeks. The suite was designed with lead bricks, a radiation shielding element, and will include lead-lined floors, walls, and ceilings.  This will protect and manage the MIBG Therapy safely for both patients and staff.  Lead bricks are extremely heavy, we can’t wait to see photos/video of them lifting them up to the top floor of LCH! 

The ISF MIBG treatment suite enables parents to stay close to their child throughout the cancer treatment, and consists of a lead-lined patient room, an adjoining room with a lead-lined viewing window where family members can spend the night.

LCH Core Nursing Staff training is coming up on June 19th and 26th. Dawn will be sharing tons of information soon to help educate everyone on MIBG treatment, family education and even what to expect as a patient.  

We love that Dawn got her own personal hard hat to keep because she likes to check on construction progress often.  We couldn’t have asked for a better MIBG Therapy Program Director… and we look forward to sharing her story soon too!  It’s the Dawns’ of the world that are making these visions of better cancer care become a reality.

We are looking for individuals who want to be part of providing comfortable care for the kids/families that go through MIBG Treatment. Our new MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}

Update #1: MIBG Treatment Room Construction Begins at Levine Children’s Hospital

 

 

 

 

 

 

 

 

 

 

R4R: The Greg Olsen Foundation and Isabella Santos Foundation to Host Pumpkin Charity Ball to Benefit Levine Children’s Hospital

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CHARLOTTE, N.C. – June 25, 2018 – Receptions for Research: The Greg Olsen Foundation (R4R) together with the Isabella Santos Foundation (ISF) announced today that they are hosting a charity gala to support Atrium Health’s Levine Children’s Hospital. The charities have teamed up to host the event because they are each helping to revolutionize the treatment options for pediatric patients and their families at the hospital.

The Pumpkin Charity Ball, a black-and-white themed formal event, will take place Friday, Oct. 26 at The Ballantyne Hotel from 7:00 p.m. to 11:00 p.m. Tickets cost $250 and can be purchased at pumpkincharityball.org. For sponsorship opportunities, contact info@pumpkincharityball.org.

R4R and ISF are both establishing innovative healthcare programs at Levine Children’s Hospital to treat pediatric cardiology and oncology patients respectively. The charity gala will raise funds to support these two large undertakings that will help solidify Levine Children’s Hospital as a leading healthcare provider in the U.S.

“It’s exciting to join forces with the Isabella Santos Foundation to better the lives of the children being treated at our local hospital. What’s truly outstanding is these collective efforts are catapulting our community hospital into a world-class medical institution that’s leading the way in pediatric heart disease and cancer,” Greg Olsen, the founder of R4R, said.

R4R, under The HEARTest Yard program, is establishing a Cardiac Neurodevelopmental Program that will house a wide range of care, including physical therapy, occupational therapy and other treatment resources typically required of those with cardiac conditions, for pediatric heart patients from birth into adulthood. The clinic at Levine Children’s Hospital will be the first of its kind in the Southeast U.S. Other leading pediatric cardiology hospitals show a tremendous benefit in patient care and vitality under this all-encompassing clinical model.

Similarly, ISF has partnered with Levine Children’s Hospital to establish the Isabella Santos Foundation Rare and Solid Tumor Program. The program will oversee care for all solid tumors, rare tumors, MIBG therapy and all related clinical and scientific research at the hospital.

“We are thrilled about this gala with The HEARTest Yard,” said Erin Santos, executive director and president of the Isabella Santos Foundation. “Both of our organizations are dedicated to elevating Levine Children’s Hospital to the next level while furthering the programs and treatment options for patients and their families. This event and collaboration will allow us to carry on Isabella’s legacy while helping other kids who are fighting cancer and congenital heart disease to Beat (the odds), Grow (awareness) and Live (without fear). ”

ABOUT RECEPTIONS FOR RESEARCH: THE GREG OLSEN FOUNDATION

Receptions for Research: The Greg Olsen Foundation, under The HEARTest Yard program, provides financial support for children with congenital heart disease being treated at Levine Children’s Hospital. The funds cover in-home nursing care and tablet-based medical consultation at no expense to the families. The HEARTest Yard’s future venture establishes a Cardiac Neurodevelopment Center that will house a wide range of treatment resources typically required of those with cardiac conditions for pediatric heart patients from birth into adulthood. The clinic at Levine Children’s Hospital will be the first of its kind in the Southeast U.S., and other prominent pediatric cardiology hospitals show a tremendous benefit in patient care and vitality under this all-encompassing clinical model. For more information, visit https://receptionsforresearch.org/the-heartest-yard/.

ABOUT THE ISABELLA SANTOS FOUNDATION

The Isabella Santos Foundation (ISF) is a 501(c)3 childhood cancer foundation dedicated to raising funds for research for neuroblastoma, other 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 in 2012. ISF works to improve rare pediatric cancer treatment options in an effort to improve the survival rate of kids with cancer. For more information, visit www.isabellasantosfoundation.org  or follow ISF on Facebook (www.facebook.com/IsabellaSantosFoundation), Instagram (www.instagram.com/theisfoundation) and Twitter (www.twitter.com/TheISFoundation).

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CONTACT:

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

jenni@walkerprgroup.com

 

Kristen McCullough, director of communication, R4R: The Greg Olsen Foundation, kmccullough@r4r.org