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Run Dream Team Run

Look at these ISF Dream Team members who ran the annual Isabella Santos Foundation 10K and received an AWARD! Congratulations not only to these individuals but the whole team. All of you are such an inspiration! You train. You show up. You run. You inspire. You fundraise. You win. Cheers to you! We are grateful for your hard work and dedication to ISF, Isabella and kids fighting cancer.

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  • Overall 10K Male:  1st PLACE Brian Levy 38:54
  • Overall 10K Female:  3rd PLACE Danielle Volman 49:19
  • Male 10K Age 1-14:  1st PLACE Jackson Lowry 54:30
  • Female 10K Age 1-14:  1st PLACE Addison Ficker 1:10:34
  • Male 10K Age 60-69:  3rd PLACE Tim McBride 1:01:43

SF 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.

A Pedicure & A Race to Find the Cure

Contributed by Wheela Sunstrom

Jenn Andrews

Most events in our daily lives go by largely unnoticed, without incident: Trips to the grocery store.  Practices for kids’ sports teams. Extracurricular school activities. Even a trip to the nail salon. But for Jenn Andrews, the latter occurrence would send an active woman on an unexpected trajectory, dictating some life-changing decisions and adjustments.

The size of a pea.

The process of getting a pedicure is generally effortless. You pick a color, settle into a comfy seat, and slip your toes into a luxurious pool of warm water.  The overall experience is mindless, relaxing, and a welcome reprieve from an otherwise chaotic schedule.

This may explain why then-pregnant Jenn didn’t think much else when her nail technician noticed a small lump on her foot. After all, the inconspicuous bump had never been noticed prior to the pampering appointment. It was classified as untroubling in her mind, and subsequently ignored.

Myxoid sarcoma.

During Jenn’s pregnancy with Baby #2, the lump on her foot grew. And so did the news. Suddenly, the salon visit from several years before went from “treat yo’self” to “you need to be treated”…specifically for a life-threatening, cancerous tumor.

An all-too-familiar story emerged after the diagnosis and initial removal of the sarcoma; remission was followed by an unfortunate return of the tumor. Jenn, unable to run from her diagnosis, had to make a difficult call.  Surgeons would perform amputation seven weeks later.

Racing, and beyond…

Now 33-years-old, a mother of 2, and a dog-mom of 3 – there are very few things missing from Jenn’s life. Her foot is certainly not one of those things!  The prosthetic she wears is barely an inconvenience compared to living without worry of recurrence. Jenn continues to fulfill her various roles with gusto, while also  launching her foundation, Move For Jenn, raising funds for sarcoma research and for amputees needing prostheses.  

Jenn Andrews

The next big  personal challenge?  Jenn set her sights on the Isabella Santos Foundation 5K on September 29th, 2018.  It will be her first race since her surgery 5 months ago. And it will be her first run with a new prosthetic.

But Jenn isn’t just running to prove to herself and others that she can do it. While it is admirable (seriously, she’s an inspiration!), Jenn chose the ISF 5K/10K race because rare, soft-tissue cancers like myxoid sarcoma and neuroblastoma are now at the forefront of her mind, having experienced it firsthand. The word “rare” carries new meaning for her, and she realized that rare sarcomas need more attention, more research, and more funding than ever before.  It’s why she uses her situation as an opportunity to help others, and why she started her foundation.

Jenn is running for the cancers you don’t hear about often. The ones that “just don’t happen” to people like her. The ones randomly discovered by nail technicians or during routine doctor appointments. The ones that don’t have a cure. Jenn runs for people who don’t have the options she had. She runs for kids like Isabella Santos, who didn’t have options until it was too late.  And she runs for people who are out of options, and shouldn’t be.

Join the movement. Join badass inspirations like Jenn. Register for the race at: www.5kforKidsCancer.com.

The Best of Times, The Worst of Times: Two Sides to Every Story

Contributed by Wheela Sunstrom

They say time heals all wounds

Isabella Santos lost her battle to neuroblastoma at the age of 7.

For some, this is a myth…something that people say because, well, they don’t know what else to say. It’s something we hear throughout our lives, but never really weigh the meaning of until you have to. Because for some, no matter how much time passes, grief never goes away.

We have learned in our ISF journey that grief and happiness are all about perspective. When people perceive our organization, they generally see all of the good things we do!  From funding research and programs to supporting families in need to running events to a myriad of other accomplishments, they see hard work for the greater good. They see Isabella’s smiling face printed on glossy paper or cast high on a projection screen, their hearts overflowing for the brave little fighter.  They see volunteers, board members, sponsors, doctors, nurses, and families – a sea of purple – working tirelessly, but positively, to effect change.  They see congratulatory hugs, high-fives, happy dances and the like when something great happens.

What they don’t always see is the other side.  Though Isabella’s mom would normally be included in the list above, it’s a hard realization that every time ISF does something amazing, she is reminded that her child wasn’t afforded the opportunity. This is where happiness and sadness become muddled.  When Isabella’s name is attached to new programs, buildings, research, and anything else, Erin experiences the proudest moments of her life. And also the worst.  Her perspective has always been real and raw, shedding a different light for those who may only perceive our progress.

Isabella’s birthday is no different.  On the one hand, ISF is celebrating her life and the legacy she left behind.  A legacy that led to a momentous milestone in the addition of an MIBG treatment room to deliver targeted therapy to high-risk neuroblastoma patients.  This. Is. Huge.  ISF celebrates the incredible, rare opportunities this treatment room will provide for patients and their families. We shout, we high-five, we do a happy dance. It is a culmination of tireless work in Isabella’s memory, aptly unveiled on her 13th birthday. On the other hand, her mom is reminded that this was the treatment Isabella received a little too late. It stings. It gnaws. It burns.

We have learned everyday that grief and happiness can coexist. We will still smile and share the joy of our latest accomplishment, the gift of the MIBG treatment room. It’s okay for us to be happy about the things we are doing. And it’s okay to celebrate the birth and life of the brave little fighter on what would have been her 13th birthday.  Because, without her, none of this would be possible.

And it’s also okay that there is another side. The side where heartache sits. Because sometimes they go hand-in-hand.

13 – What Should have been, what could have been, and what it is

Written by Erin Santos, Isabella’s Mom

Erin Santos & daughter Isabella. Isabella lost her battle to neuroblastoma at the age of 7.

Tomorrow Friday, March 9th is a big one. 13.  Sure, each birthday number has a different meaning, but when I hear the number “13”,  it’s a big one for me. Luckily there are only a couple more that might really be daggers in the heart. 16, 18, 21 – I see you all waiting for me off in the distance. I will get to you eventually, but tonight – I’m staring the dreaded 13 right in the eye.

I guess because it means she no longer would have been a kid. Teenager is a scary word. First of all, I feel too young to have a teenager. Maybe because I’m single, I listen to dirty rap music, stay out too late,  and want to sleep until noon on the weekends – all traits of a teenager I guess. But then it had me thinking – is that what teenagers do? In true Erin form I constantly find myself avoiding girls her age. I don’t want to stand next to them because it would tell me how tall she would have been. I don’t want to listen to what they are talking about or think about the fact that they all have periods now and wear bras. In my head it seems crazy to me that she could have ever been one of those girls. My mind just won’t let me go there. But as I sit here and think about her, I realize that I prevent myself from knowing what 13 year olds girls are like. How do you know about them if you don’t have one? It’s definitely not something you can look up on the internet without getting flagged. TV doesn’t really depict true 13 year old girls either. So I decided to research it a bit.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

I find an unsuspecting person who has a teenage girl and just say, “Tell me everything she is into”, which I’m sure is a creepy question. But as they start talking I find myself  ridiculously-filled with questions that I almost have to sit on my hands. Questions start out basic enough, like: what kind of music does she like and does she have a boyfriend yet? Then, 40 questions later, I feel like I’m just getting started and have to prevent myself from having the full 2 hour interview I really want.   They listen to all kinds of music from electronic to rap to everything in between. They like SnapChat and Instagram Stories. They have boyfriends who they hold hands with at the mall. They only see this boy in group settings but ignore him at school. They are all at this tipping point of looking like kids one minute, then transforming into a woman the next, with the help of a dress and some makeup. They are into fashion. They binge Netflix. They want to go to the Melting Pot on their 13th  birthday with their friends and catch a movie after. Their girlfriends occasionally turn on them and the drama that ensues can be pretty hurtful. They are sweet and moody all at the same time, probably due to the period they just got for the first time this year. They can curl up to you like a baby one minute, but then have the most adult conversation the next. I could go on and on…

The coolest thing about finding these things out isn’t always the answers. Sometimes it’s hearing the excitement in the voices of parents as they talk  about them. While all the attributes they are telling me feel like tiny knives going into my heart, I find myself knowing that I, too, would be that boastful parent.  She would drive me crazy I’m sure – but all the little things that would have made her up would have been a little piece of me – the good and the bad. It would have been exciting to be a part of her ride to 13. As I digest all the attributes of a “normal” 13 year old, I find myself with this gut- wrenching feeling. Sure, some of it is jealousy… but some of it is the thought that this is what she should have been like.  Instead, I look at the life that was more realistic for me. She could have beaten the cancer, but then we would have had a 13 year old that probably wasn’t anything like the girl I described above. When you sign off on treatment plans, the list of side effects is an afterthought. To be honest, you really stop even reading them. The list is so horrible but at the time it doesn’t matter. You are just trying to keep her alive.

I think about the 13 year old that would have survived after years and years of grueling treatment and over 5 relapses.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

She has hearing aids due to the cisplatin that you gave her over and over. She is missing teeth from the chemotherapy cycle they properly named, “Kitchen sink” because that’s what it was. She’s a full 18 inches shorter than everyone because her body was never able to grow. She doesn’t play sports because her bones are so weak from the radiation you hit her with over and over. She struggles in school because she now has learning disabilities thanks to 5 years of treatment. Oh and she is probably held back because she missed so much school from being in the hospital so much. She is missing patches of hair due to brain radiation that prevented some places from ever growing back. She has trouble making friends because she is different and the friends she has feel like pity.

Let’s not even talk about a boyfriend or the road she has ahead of not being able to have children. She hates you because she is different and she blames you for it. And just when she figures out how to adapt to the cards she is dealt, she is diagnosed with ovarian cancer at 15 thanks to the high probability of a second cancer. This. This is what could have been.

You want to keep your child alive, every parent does. But sometimes they don’t survive. And you look at what could have been your life if they did and that scares the shit out of you too. I oftentimes wonder if she was taken because what could have been might  have just been worse. I know you aren’t supposed to say that because having them alive with a million problems is better than not having them at all, right? Right?

Erin Santos & daughter Isabella.  Isabella lost her battle to neuroblastoma at the age of 7.

Instead I get to look at what it is. For me, her 13th birthday will consist of opening my eyes tomorrow morning and being crippled with pain inside. I will get Grant and Sophia off to school and sit in my kitchen alone with a cup of coffee and cry my eyes out. It will eventually stop and I will get in the shower and distract myself. I will pick out a purple dress and dry my hair. I will pray that my eyes are not puffy and put on makeup to hide my face. I will drive up to Levine Children’s Hospital and cry again as I make my way along the path we drove for years to get her treatment. I will tilt my head to the side so the tears do not remove my eyeliner. I will put on my best ISF face as I enter the lobby of the hospital, knowing to keep the conversation light because if the wrong person says the wrong thing to me, I will find myself imprisoned in the bathroom.  I will make an inappropriate joke and thank large donors and supporters for coming to celebrate the new MIBG room we are building in Isabella’s name. I will carefully not watch the clock strike 11:12 am, the time she was born.

My ISF team and I will go to lunch where I will drink wine and pray they keep the conversation light. My drive home will be spent calling my Mom who will cry with me and tell me how much good has come from her short little life. My sister will call and will know to talk about everything except Isabella.  Someone will leave an anonymous gift on my porch to let me know they are thinking of me. The kids and I will take flowers and balloons to her site and they won’t really grasp the level of this visit but will kiss her stone and say “Happy Birthday”. I will sleep off the wine, troll social media then try to plan a night out of the house. My girlfriends will take me out and get me stupidly drunk, trying hard to have no real conversations with me about what my day has been like. They will try hard not to touch me because if they know me, a hug might break me in two. I will anxiously wait for the clock to strike 12:00, knowing this awful day is behind me. I will fall asleep in my clothes.

That is what Isabella’s 13th birthday is because my daughter got cancer and she died. Not at all the day I had planned for her when she was born, but now it is what it is. But on March 10th and in true Erin fashion, I will get out of bed and start another day, keeping the mission moving.  24 hours goes by slowly and painfully but in the end, it’s still just 24 hours.

I can do this.

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Sydney, 13 year old, wishes to visit the Harry Potter museum in London.

Let’s Become a WishMaker Together in Honor of Isabella’s Birthday

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  

There is a girl fighting cancer, Sydney, who is 13 years old and wishes to visit the Harry Potter museum in London. We can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday.

Please donate to help make Sydney’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal by March 31.

DONATE HERE

*Donations made to this campaign are a gift to the mission of Make-A-Wish. Each contribution will be pooled with other gifts to grant the wish of the child shown above or of other eligible children. Costs shown are estimates. All wishes listed will be granted.

Volunteer Position Opening: Silent Auction Project Manager

Get involved in your community… a resolution on many 2018 Intention lists.  The impact of our raffle and silent auction at our flagship 5K/10K September event has grown leaps and bounds since introduced in 2013.  The dollars raised through our silent auction helps impact our direct mission of helping kids fighting cancer.  We are looking for a Silent Auction Project Manager (volunteer position) located in Charlotte to head up our 2018 Silent Auction Committee.  Our raffle and silent auction has become such an important part of our fundraising goal and we have some new things in store this year.  This is not a ‘start from scratch’ volunteer position as there is a committee in place and the structure is built.
Position Details:
  • Run monthly silent auction committee meetings
    • Set ongoing monthly committee meeting
    • Primary contact with committee volunteers
    • Go to on all committee questions & follow up
  • Incoming auction item data entry
    • Enter auction items as they come in from committee volunteers
  • Manage business contact list
    • Manage business contacts excel spreadsheet
  • Auction package display
    • Manage the packaging of all raffle & auction items needed for event location
Timeline:
  • February:  Committee meetings and auction collection starts
  • June-August:  Heaviest auction collection months
  • August & September:  heaviest volunteer work due to event date
Thank you to all the volunteers who help make our raffle and silent auction a success each year!  We couldn’t do any of this without you!  More than anything, we have a wonderful group of volunteers and it is a great way to meet new people and develop new friendships!  Please contact Andrea if interested: dre@isabellasantosfoundation.com