Magical Moments/in ISF News & Updates/by Rachel Wood
A very special group of people sent the Santos family on their last Disney trip with Isabella right before she passed away. They knew that her most favorite memories were in Disney… and were determined to give Isabella and her family one last magical moment together. Isabella could barely get out of bed a good bit of the trip, but there were times the magic brought her out of her pain for just a few moments. Here she is watching fireworks right outside her balcony.
“We even decided to take her there just a couple of weeks before she passed away. Make-A-Wish has made this place the one place in the world that brought her the most happiness. We saw the impact that a wish trip had on her mental and physical state, as well as the rest of us. It made miracles happen for us – so many times.”
13-year old Sidney is fighting cancer… and we want to help bring her happiness too! From one magical moment to another, our hearts swell to think that we all could play a part in her WISH to visit the Harry Potter museum in London. We still have $3,000 left to raise to reach the $6,000 fundraising goal by March 31. DETAILS and DONATE.
We Did It: MIBG Treatment Room Coming to Charlotte/in ISF News & Updates/by Rachel Wood
Friday marked a huge milestone for our Foundation. And we aren’t just talking about a monetary milestone and funding a million dollar project, but also an emotional one. On what would have been Isabella’s 13th birthday, it was extremely special to be able to celebrate her life, her legacy and especially the IMPACT she is making on this world with the coming of an MIBG Treatment Suite at Levine Children’s Hospital.
Levine Children’s Hospital will now be 1 of 20 hospitals to have a MIBG Treatment room in the U.S. The two-room MIBG suite, which will include a lead-lined patient room and an anteroom for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and other rare pediatric cancers with minimal side effects. In addition, availability of this room will allow for research studies aimed at testing the effectiveness of early MIBG treatment regimens. Isabella and her parents were forced to travel to Childrens Hospital of Philadelphia due to this treatment not being available in Charlotte. We are excited that we are changing this challenge for other families.
The MIBG project team did not forget one single detail. Most MIBG treatment rooms are just a one-room area for the patient receiving treatment, while their parent or caregiver sits on the other side of a lead-lined shield. The two-room suite will give the child receiving treatment the ability to see the parent or caregiver through the connecting room window. We love all the details the project team has included into the treatment suite design like utilizing Isabella’s artwork and a multi-colored fiber optic light design on the ceiling. And that’s just a start.
We were joined on Friday by our 3 Wish Circle Members and sponsors who helped us make this room a reality. What was also special, doctors and nurses who treated Isabella during her time at Levine Children’s Hospital were in attendence. To watch them listen to Isabella’s mom as she spoke was incredibility touching. It was definitely a full circle moment. Everyone in attendance signed a piece of Levine history as the lead beam will become part of the suite during construction.
We can’t thank everyone enough for the support and believing in our foundation. You are helping us make a mark on the future and we will continue to strive to elevate cancer care for kids. We look forward to sharing updates as construction begins in a few short weeks. The hospital will have construction cameras, it will be fun to watch the room unfold.
News Coverage on the morning:
The Best of Times, The Worst of Times: Two Sides to Every Story/in Behind The Foundation/by Rachel Wood
Contributed by Wheela Sunstrom
They say time heals all wounds
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
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.
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.
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?
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.
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.
*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.
Who Says Karma Isn’t a Real Thing?/in ISF News & Updates/by Rachel Wood
When we ran our ‘Car For A Cure’ end of year raffle in December… we never imagined it would end up like this!
Steve Amedeo was our winner. And the funny thing is, he had no idea what he was buying raffle tickets for. Steve simply wanted to support our year-end campaign and became the winner of a 2-year lease of a 2018 Platinum Edition Nissan Murano donated by Modern Nissan of Lake Norman. If you don’t know Steve, you should. He is the Co-Founder of an amazing organization, All-In to Fight Cancer. This organization was created in honor of his friend Rob Eubanks who passed away from cancer.
Who says karma isn’t a real thing?
After he won, Steve started making some phone calls. He didn’t need the car for himself, but wanted to figure out how the Charlotte cancer community could benefit from Modern Nissan of Lake Norman’s generosity. We are thrilled that the donated 2-year lease has been gifted to ChemoCars who will use the The Isabella Santos Foundation ‘Car For A Cure’ to provide local cancer patients with free on-demand rides to and from chemotherapy. TOGETHER, we are driven to support our local cancer community. For more info about the work ChemoCars is doing here in Charlotte, visit https://chemocars.org/
This is action. Good people making things happen in our Queen City.
Founded in 2010, All-In to Fight Cancer is a grassroots, nonprofit group dedicated to increasing public awareness and raising money to find a cure for cancer, by hosting Texas Hold’em tournaments. To date, they have raised over $1,000,000 to support the fight against cancer. Each year, they choose benefitting organizations that are doing incredible things in the local cancer community. They are a grassroots organization that is committed to keeping their funding local and as high-impact as possible – every penny of our proceeds goes straight to our partners.
Each year, they choose benefitting organizations that are doing incredible things in the local cancer community. They are a grassroots organization that is committed to keeping their funding local and as high-impact as possible – every penny of their proceeds goes straight to their partners. Last year, their tournament raised almost $300,000!
Learn more about Chemocars story, you will fall in love with them just like we did!