Tag Archive for: pediatric cancer

Making Goals Together

“I never knew the benefit of running with a group until I joined the Isabella Santos Foundation Dream Team.  I started running 5 years ago when a friend challenged me to run a 5k.  When I realized I could do it, I had the desire to improve.  However, it takes a lot of self-motivation to stay on track.  And it kind of gets boring when you are running by yourself and achieving a goal when no one else is aware of it.  

I “ran” across the Isabella Santos Foundation Dream Team 3 years ago.  I decided to attend a group run one day, and the rest is history.  I was pushed to be healthy.  I was motivated to run and cross train.  I learned how to properly train for a race.  I could not let anyone down so I tried to attend every Saturday morning group run.  I looked forward to the reward at the end of our Saturday runs –  Clean Juice with a new group of friends. But most importantly, it was incredible to see everyone cheer each other on when you are accomplishing your goals.  You celebrated together.  You laughed together.  You smiled together.  There’s no better feeling than to accomplish a personal goal and share it with others. 

I achieved a personal record on a half marathon in Fall 2017, and I never ever thought I could do it.  I owe it all to the ISF Dream Team.  There is no way I could have achieved this goal without everyone’s support, pushing me to improve my performance, and cheering me on.  I am forever grateful that I am a part of the ISF Dream Team.  

It’s not too late to join the Isabella Santos Foundation Dream Team.  I promise, you won’t regret it.” 

– Tammy Lowry

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.

ISF MIBG Ambassador: Creative Fundraising

MIBG Ambassador Charity Salon Night

Our fundraisers are getting creative… and we love it! Courtney, a first-time ISF fundraiser committed to become an MIBG Ambassador this year. Last night she hosted a charity salon night at Petals Nails & Brow Boutique who generously offered to extend the hours of their salon and donate 20% of their sales for the evening. Girls night out, pedis, manis, wine, sweets and a few prizes… Courtney raised $550! Thank you Courtney for the creative fundraising idea, thoughtful touches on the evening, and thank you Petals Nail & Brow Boutique for supporting our community.

With the ISF MIBG Therapy Suite currently under construction at Levine Children’s, our MIBG Ambassadors are busy fundraising to ensure that we are preparing for the kids and families who will be entering this program. Learn more about what it means to become an MIBG Ambassador and how you can directly impact a child being treated with cancer.

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}

 

 

 

 

 

She Left Us Before 10

Cancer Stole My Sister

Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

– Grant Santos, Isabella’s Brother

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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.
 
– Make a donation: donateisf.org
– Participate in our Sept 5K/10K: 5kforkidscancer.com
– Sign up as a MIBG Ambassador: https://bit.ly/2MsUQdm
– Sign up for Isabella’s Dream team: https://bit.ly/2smlhqh
– Participate in our CBCC platelet drive June 21-28: https://bit.ly/2sVjafX