Tag Archive for: pediatric cancer

Things we hate to do, but still need to be done

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Written by Erin Santos, Isabella’s Mom

I get it.  It’s not a fun thing to do.  You may drive all the way to the center and get turned away.  It’s cold in there.  It may take them a couple of tries to find a good vein.  You are worried you might pass out.  It might be uncomfortable for a while.  It’s boring.  It may take a little longer than you want it to.  I know all these things that go through your head, because they go through mine too.

You would think after our family’s experience, I would be giving blood every chance I could.  But, like you all – I get busy or some of these excuses start ringing in my head.  I have to be honest though, I do try as much as I can to give blood if I have the chance at a blood drive.  Giving blood doesn’t take long at all and other than having to control my alcohol or exercise that day – it doesn’t impact my life too much.  It’s like voting for me.  I feel good doing it and feel proud walking around with my elbow wrapped up in horrible blue tape for a couple of hours.  It’s like a battle scar that somehow says, “I care”.

Platelets.   For some reason this process is a whole new ball game.  I don’t give them as much as I should.  I’m just lazy about it really.  I’m very particular about my platelet giving.  It is a must to have someone with me to entertain me for 90 minutes.  I can’t focus on Isabella too much in those chairs or the experience may become to painful.

I have had some very memorable platelet donations.  The first anniversary of her death, I decided to schedule a platelet donation during the hours she died of June 28th.  I figured that if I was going to do this in her honor, let’s really do it.  The center was full that day as we were really pushing for 100 platelet donors that week, which is harder than landing on the moon apparently.  I sat in my chair and watched seas of purple come in and out.  Everyone knew that I was struggling because I sat there trying to have conversation, but knowing that tears that were falling slowly from my eyes as I talked.

I could see the hour of her death approaching and I just wanted to die.  My brother came in during that time and sat with me.  I think he gave blood instead of platelets that morning but all I really remember was him being with me.  He was there with me on the day we found out she had cancer, up until the day she died in our house.  He is a quiet brother at times but his presence is heavy.  We don’t often talk during these times about what is really going on in our head – it’s like an unspoken thing.  He knew how hard it was for me as I sat there and sobbed.  He just sat there – understanding how the things we hate to do, still need to be done.  This is not where I wanted to be on this morning and he knew it.  He knew I wanted to be in my bed, sobbing and not sitting here in this gray chair.  But once again, I was doing something, not for myself, but for her.  It was the longest donation of my life – but the most meaningful.

We left that morning together and drove to pick out an engagement ring for his girlfriend, Laura.  He let me be a part of a huge day in his life, maybe because I let him be a part of mine.  We went to lunch and had a drink and laughed.  By then my tears were dried up and I had focused on the excitement of his day.  He was starting a new chapter and I got to be there for it.  It was a good day in the end.

Each year as this date approaches, I feel myself wanting to retreat.  I have gotten a little smarter and try to no longer go during that hour of her passing.  It’s just not a smart thing for me to do anymore.  But I still go.  I go because I know how important blood and platelets were to her survival.  I go because I remember her bruising from the slightest touch and how platelets repaired her body so easily.  I go because I remember her not being able to walk into the hospital, only to find out that she was in such desperate need of a blood transfusion that I would have to carry her tired body everywhere.  She would run out of the clinic after her transfusion, as if the events of the earlier day never occurred.

I go because every time I’m there and I check in, the staff knows me and knows her.  Someone there always says a kind word to me about her legacy and I know there is no where else I should be.

I go because it’s the right thing to do.  I go for her.

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations.  Our goal is a 100 donations.

– DATES: Thursday, June 21st – Thursday, June 28th
– GOAL: 100 donations
– PHONE: 1-888-59BLOOD / Can call to schedule at any center
– EMAIL: plateletdonor@cbcc.us

What is your Why?

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In the fundraising and nonprofit world we all have our own WHY for WHAT we do.  We talk about WHAT our charity is about and WHAT we do to fight… but connecting that WHY is the difference when trying to make a connection in fundraising.  The WHY is the goosebumps and tears that move donors to action.

Our ISF team talked several weeks ago that we wanted to ask our Dream Team and our MIBG Ambassadors this one question:  WHY do you fundraise for the Isabella Santos Foundation and pediatric cancer. It’s a question taken from Simon Sinek’s book and TEDx Talk, ‘Start With Why’… aimed at inspirational leadership.  For us at ISF, Sinek’s thoughts our perfect for fundraisers too.

Tim & Granddaughter

The funny thing is we haven’t asked this question to our fundraisers yet… but our faithful and consistent supporter, Tim McBride, shared his WHY this weekend.  We all have them.  Some very specific like Tim’s.  Some maybe not so specific.  But the WHY is what means the most.  

Tim, your WHY stopped us in our tracks.  It gave us goosebumps.  We thank you for using your pain to make a difference in this world…

“People are always asking me why I’m so passionate about raising money for cancer research, treatment, and patient services. I have many but this started it off. I always thought (and still do) that my brother, Mike McBride, was the greatest athlete in the world. When I was young, Mike, my Dad, and I would watch pro football on Sunday afternoon. I remember my Dad saying he would see Mike play on Sunday too. I wanted him to think I was good too. When I was 8 years old, I entered a Punt Pass and Kick contest and was fortunate enough to win my age group. I walked home with my Redskins jacket I won for first place. I went to show my Dad so he would say I could play in the pros like Mike. But cancer was doing its job on him. He had a brain tumor and this wasn’t a good day for him. After I told him I won and showed him my jacket, he just laid there in the bed. As I was leaving, I heard him ask Mom, “who was that?” I have never forgotten that day. I knew I was never good enough to play on Sunday but that pain has driven me to want to raise money so a kid never has to feel the pain I did that day.” 

-Tim McBride [McBeast, ISF MIBG Ambassador, Dream Team Member, Run-Streaker, Cancer Crusher, Santa Clause, & all over Bad Ass]

WHAT IS YOUR WHY?

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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.  

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.  

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