We Will Train Together. Run Together.

Keith & Jackson, Dream Team Week #2

The Isabella Santos Foundation Dream Team, a Charlotte running group, has officially started training for 2018.  Members of our team run with purpose and heart… we always enjoy hearing about why they run, what inspires them and their goals to get them to the finish line.  When it kicked off a few weeks ago, we learned that two of our Dream Team members set a goal together for this year.  Jackson Lowry, at age 13, accomplished his second half marathon last year with a personal record time.  Keith Brent accomplished his third half marathon since training with the ISF Dream Team.  As they both were looking back on their accomplishments, they were trying to decide what was their next dream.  Jackson admires Keith, and he said “one day I want to be able to run a full marathon.”  Keith without hesitation said “I will do it with you.  You pick the race, we will train together.  Run it together.” 

And the bond was created. They have set their 2018 goal – the Rock ‘N Roll Savannah Full Marathon in November.  Training is officially underway.  This past Saturday, they ran 8 miles in step together as they planned out their training schedule for the upcoming week.  Daily texts, running together, and high fives – – they keep each other motivated.  They are already talking about how excited they are going to be when they cross that finish line together on November 3rd.  They have 108 days to finish their training, and they do it all for Isabella and other kids fighting cancer.

These goals and uncommon bonds are what inspires us at the foundation!

A little about Jackson…

Jackson Lowry, at age 12, started running with the ISF Dream Team in Summer of 2016.  When he became diagnosed with Type 1 Diabetes in November 2015, he understood how it felt to be diagnosed with a disease that had no cure. He was determined to not let his diabetes stop him from following his dreams.  He has trained with the ISF Dream Team, accomplishing several races including 2 half marathons.  This year, he is training for his very first full marathon while raising money for the Isabella Santos Foundation.  Jackson’s mission in life is to inspire more kids to give back.  You can support Jackson and cheer him on by making a donation to his fundraising efforts.

And Keith who has been supporting ISF since the beginning…

Keith Brent, and his wife Christine, both personally knew Isabella Santos.  When ISF was formed in 2007, they immediately became involved with the foundation.  Three years ago, Keith joined the ISF Dream Team.  Keith loves the challenge and fitness benefits of running, all while raising money in memory of Isabella.  Keith and Christine Brent have raised over $14,000 through the ISF Dream Team, directly crushing cancer in the Charlotte community.  Keith has accomplished three half marathons while being a part of the ISF Dream Team, and his goal for 2018 is to complete a full marathon.  You can support Keith and high five him on by making a donation on his fundraising efforts.  

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.

Meet ISF: Director of Corporate Philanthropy

We have a lot going on at the foundation and we are so excited when more hands join in the mix.  Meet Kerry Winslow, our new Director of Corporate Philanthropy.  Kerry has been volunteering with ISF for years and wanted to take her involvement to the next level.  And boy has she jumped right in… during her first week with ISF in June, she donated platelets for the first time ever and donated blood the next week in honor of Isabella.  Not only is she helping ISF move to the next level, she is managing the event planning for our upcoming Pumpkin Charity Ball.  Her energy and zest fit right in and we love the new perspective she is bringing.  Earlier this year ISF committed to funding $5 million to establish the Isabella Santos Foundation Rare & Solid Tumor Program at Levine Children’s Hospital. Kerry is dedicated to help us figure out how to get there and says she wanted to make a difference by being part of the impact to kids with cancer and the change to our city.

“I am inspired by hard work and grit.  One of the main reasons I decided to get involved with ISF is because I am inspired by the hard work and grit of this foundation.  The idea of a community coming together and building something that will ultimately change the landscape of pediatric oncology in our city, and our country, is truly amazing.”

A little bit about Kerry…

Do you have kids?  I have been married to my husband, David, for 20 years this August! We have 3 children David (15), Audrey (13), and Nolan (11).

What’s one thing on your bucket list?  One thing on my bucket list is to totally disconnect and spend a couple weeks exploring Greece and Italy!

What’s your favorite thing to do?  I love to travel and am always up for a quick trip to the beach or NYC.

What’s your favorite movie?  It’s a toss up between Father of the Bride and My Best Friend’s Wedding! 

What inspire you?  I am inspired by hard work and grit.  One of the main reasons I decided to get involved with ISF is because I am inspired by the hard work and grit of this foundation.  The idea of a community coming together and building something that will ultimately change the landscape of pediatric oncology in our city, and our country, is truly amazing.

MIBG Construction Update #3, Levine Children’s Hospital

Holy cow what a cool morning. Earlier today our team visited the ISF MIBG construction site at Levine Children’s. To set foot into the pediatric cancer therapy site that your dollars support is surreal!

In the pictures you will see a couple of things. The space on the right will be the patient room, the space on the left will be the parent/guardian room… in between you will notice a large steel door frame where the lead lined door will be placed. The huge structural steel beams have been set underneath the floors and on the ceiling… these are required to hold the weight of the lead bricks that are encompassing the room to protect and manage the MIBG Therapy safely for both patients, family and staff. Lead bricks have been installed partially on one wall. (Insider scoop: the construction team may or may not have broken two elevators getting them up to the 11th floor. That’s how heavy the lead bricks are.)

It was impressive to learn that the lead lined doors and windows will be thicker than any other MIBG Therapy room doors/windows in the country which will provide the best radiation protection during this cancer therapy. Looking forward to sharing these pictures.

The LCH team is getting ready prepping. Nurse Dawn, MIBG Therapy Program Director, has been super busy creating program materials, administering the core nursing education, and have learned from support staff such as radiation safety, child life specialists and bone marrow transplant coordinators. The MIBG nursing team has had a conference call with Nationwide Children’s Hospital where they were given the opportunity to ask experienced MIBG nurses what they have learned, what they would change, their fears, ect. That’s pretty cool.

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}

 

 

 

 

 

Wanted: Auction Committee Volunteers

Our Silent Auction is a huge part of our fundraising efforts each year!  Our Auction Committee is moving full steam ahead creating must-have auction packages. We are excited to not only have our auction available at our annual 5K/10K For Kids Cancer event, but also an auction at the NEW Pumpkin Charity Ball in October with Receptions for Research: The Greg Olsen Foundation.  We are in need of more volunteer hands.

We don’t just need help securing items… but packaging them as well.  We receive such fun items from our generous community businesses and beyond:  Date night packages with hotel/dinner/limo, jewelry, kids activities, sports tickets and memorabilia, spa packages, vacations and more.  We would love for you to join our Auction Committee and help us make this year’s silent auction a success.  Our two auction needs are:

  1. Auction Procurement:  our community (and far beyond) have been so generous in donating items for our silent auction.  We need your help in requesting donations from local businesses and securing the items.
  2. Auction Packaging:  Don’t feel comfortable asking for donations?  We still need your help… just as much work goes into the packaging .

We hope you will join us and volunteer this summer to help make our silent auctions the best in town.  Interested in learning more, please email Melanie, our Auction Committee Lead: melanie@isabellasantosfoundation.org

She Left Us Before 10

It was 9:50 am on June 28th when Isabella took her last breath.  The day had barely begun.

But her journey had been a long one for a 7-year-old.  Five years of diagnoses and treatments and relapses and surgeries…and all of the other things you can’t prepare for.  She fought hard. Her parents fought hard. We all did. And we still do today, because she – and kids like her – deserve that much.

Isabella will never toast to a 10-year wedding anniversary.
She won’t attend a 10-year high school reunion.
She’ll never celebrate being 10 years cancer-free.
She didn’t get to celebrate her 10th birthday.
Isabella never even got to see 10 am on June 28th, 2012.

On this day, we honor the child who left us before 10…whose legacy helps us continue the fight. Below is the blog entry Isabella’s mom wrote the day of her passing.  We share it every year as it is real. It is raw. And it is a reminder of WHY we continue to fight.  Make a donation in Isabella’s honor

She Left Us Before 10

[June 28th, 2012] Moments go by and I forget that it has happened. I think that she is just out with someone. It all happened so quickly but the hours felt like an eternity. Tuesday night I got her up out of bed and put her in a warm bath with me. I knew the water would feel good to her and cleaning her would help her sleep. As she laid on top of me we tried to talk about things but when she would speak, the words didn’t make much sense and she was having trouble getting words out. I think that for the first time it made her nervous. She could hear herself and she knew it wasn’t right. Stuart helped her out of the bath and she was too weak to use the restroom or have her teeth brushed. We were supporting her completely. She curled up in bed and tried to watch “cats and dogs” with daddy but she was so exhausted.

I was still giving her oral meds and pills every couple of hours so we were controlling pain, vomiting and anxiety pretty well. I remember giving her meds at 4 am that she took but when I woke at 6am, she could no longer take the meds. Stuart and I knew that morning that we had turned another corner and I started pushing all meds through her port from then on. When hospice arrived that morning, they confirmed that we had hours. Just the day before we were given a couple of days up to a week, and like that – we lost time.

We began to allow people to stop in for a few minutes each and give her kisses and goodbyes. Each one was harder and harder. I just sat there and held her hand as the hours progressed. Her heartbeat was still going strong but her breathing had changed. The time between breaths was getting longer and longer as the day continued. I was able to curl up with her at moments through the day and we would nap together. It felt normal as I curled around her body and allowed myself to relax. We just laid together all day. Each time I had to get out of bed to get her iv meds together, I was scared. I knew that every moment was crucial. I remember falling asleep from midnight to 1:30 in the morning. As soon as I woke, I started to cry because I was so pissed with myself for missing that 90 minutes. She looked so different in just 90 minutes. Family took shifts with me as I tried to stay awake as best I could. Stuart caught a cat nap while my mom and I laid on each side of her. My brother sat in the chair next to us as we talked about anything to keep us awake. I would talk but watch her stomach rise. My conversation would come to a halt at times because I was waiting for a breath. I kept putting my hand over her heart to feel the pounding of it to keep me sane. By this time, her eyes were no longer closing. It made it hard to sit in front of her because they were no longer her eyes. I knew that she was gone but her body was trying to live. It was ripping my heart out that my daughter’s once beautiful face had become so painful to look at.

I was able to sleep from 6-7:30 in the morning while stuart and my sister kept watch. I knew when I woke and looked at her that it was it was time to close off our bedroom to family and have Stuart and I lay next to her. Her body temperature was dropping and her color was changing. I kept rubbing her hands, thinking that if my hands rubbed them enough, they would turn pink again… But they never did. I wish I could of sat behind her and just held her but I couldn’t. I had to sit facing her. I wanted her to know that I wasn’t afraid. I was going to experience every minute of this moment with her no matter how hard it was.

I think Stuart thought she would go in a couple of hours. But I knew by looking at her that it was time. Her breaths became scary.. Each one made me think it was her last. I could see the end of her line resting on the skin above her heart so I just watched it move so slightly up and down to assure me a part of her was still here. Stuart told me that I’m putting too much pressure on myself by not looking away. But I couldn’t. Her face changed. I don’t know how to describe it but it did. I knew that the next breath would be her last.. And it was. I sat there in silence.. Just holding her hand. I pushed away the end of her port and placed my hand on her chest. There was nothing. 9:50am. So many times in her life my hand was feeling her heartbeat and it wasn’t there. I just said, “Stuart.”. And we both knew it was over. I kissed her sweet face, her sweet hands and tears of pain were falling from our eyes.. Feeling like knives cutting our faces. We locked our door and knew that we owed Isabella the privacy she deserved as we got her together. I took off her port, her patches and her bandaids, freeing her from it all. Stuart carried her to the bathroom and laid her against him in the bathtub as I washed her body. We laid her down and dressed her in her favorite silk pony pjs and carried her back to our bed. We spread out her favorite blanket and put her head on her silky pillow as we wrapped her up nice and warm. I kept trying to close her eyes because I felt like it would scare Grant but they still wouldn’t close. Her color was changing quickly so I had to put some pink on her lips and cheeks just so grant wouldn’t notice her coloring. We brushed her hair and folded her hands on her chest. We let our family come in one by one and see her as we sat back, knowing we had truly done all at we could do.

My mom picked up grant from camp and brought him home. We took him in to see her and he sat on my lap next to her and cried. He had lots of questions like how we knew she was dead, if she was just going to stay in our bed with us now that she wasn’t alive. So many innocent questions. Questions you never want to give the answers to. Sophia came in and crawled right up in bed with her. “Bye Belle” she said as she gave her a kiss and a hug and then off she went. The funeral home came quickly which was best. Of course the A/C unit on the second floor of our house went out over the last 24 hours of Isabella’s life so by this time in the process, our bedroom was 78 degrees and climbing. Someone told me that they were here to get her and I just kept thinking, please don’t be creepy looking. Please don’t have bad teeth or some cheap suit on with a stain on it. Why was I thinking this? Stuart carried her downstairs and I swore I wouldn’t watch as they took her. But there I was, following behind in my pajamas watching every move. They placed her on a gurney and I kissed her head and told her I loved her. I had to turn away as they put her blanket over her face. I saw the bag underneath and I knew they were going to zip it over her. I had to turn away. When I looked back, she was in the back of a minivan driving away and I wanted to scream. I knew the cremation would be in 24 hours and I couldn’t handle knowing that she was going to be somewhere without me next to her in a building with strangers. But what could I do? Or that in 24 hours it will be like her body never existed.

I wish I could tell you what happened the rest of the day but I can’t. And I’m sure you are all wondering why I am sharing such intimate details. It is because I am still blown away that it happened. You know children die from cancer. But to see it is unlike anything you have ever imagined. All the notes of “thinking of you, praying for you..” or my least favorite, “RIP Isabella”.. they all seemed like things I would have said to someone but they feel so weird to hear because the don’t feel equal to the situation If everyone had to witness what Stuart and I witnessed, there would be a cure for cancer. Instead of those comments, it feels better to hear, “I ran around my house screaming and punching walls today..”, or “I thought of Isabella and gave blood today or decided to volunteer”, or “I hit up my wealthy great uncle and he gave a million dollars to neuroblastoma research.”. Those feel more appropriate after what I saw. Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening. People say God needed another angel. If God can make giraffes and waffles and walmarts, then why doesn’t he just MAKE another angel? Don’t take mine. I know I’m in these stages of grief.. Denial, anger, frustration, sadness. I experience a new stage every hour. We had to bolt out of town for a couple of days because I’m literally tripping over her everywhere I go. Her flip flops, her placemats, her toothbrush, her book bag.. It’s punching me in the face at every turn. I need to clear a daily path when I get home so that I can at least function.

-Erin Santos, Isabella’s Mom, June 28, 2012

Another year without Isabella is another opportunity to fight even harder. It started with a girl.  And she is changing the world.  Please help us keep Isabella’s legacy alive.  

 

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