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Mother-Daughter Duo Making a Difference

Charlotte and Jennifer Gaston

Charlotte Gaston was just 11 years old when she got involved in the Isabella Santos Foundation. Her mom, Jennifer, was serving on the ISF 5K/10K for Kids Cancer marketing committee and brought Charlotte to a meeting. It was there that Charlotte shared some great ideas and was asked to join the committee.

Since getting involved in 2012, Charlotte has volunteered on the marketing committee and at the race, run in the event, and used her creative skills to fundraise for ISF. She made earrings and hair ties to sell for donations for ISF, and painted a canvas at Bella’s Birthday Bash at Small Hands Big Art. The painted canvases from the event were used in various ISF events throughout the years.

“I was just along for the ride with Charlotte’s great ideas that she brought to the table,” said Jennifer. “Charlotte and I have volunteered, distributed race materials to retail stores and have done her projects together. Sharing this experience with her has been very rewarding.”

Charlotte also helped coordinate ISF’s T-Shirt contest where she brought together students from area high schools to collect the entries and select the winning design, which was featured on the kids’ race shirts. In addition, she assembled bracelets for ISF’s Coffee For A Cure.

“It is so cool seeing how much the Isabella Santos Foundation has grown and the impact we have all had over the past six years,” said Charlotte who is now a senior at Ardrey Kell High School. “I want to stay involved as much as possible this year before I head off the college.”

Jennifer also continues to stay involved as a volunteer for the race and Coffee For A Cure, and is passionate about introducing her friends to ISF. “Volunteering with the Isabella Santos Foundation has been a great experience for both of us and has helped Charlotte see what an organization like this is capable of with the support of a lot of people,” says Jennifer. “This experience has been very meaningful and will help her in college about how to get involved and make a difference.”

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.

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.  

 

That’s What Moms Do…

Written by Erin Santos, Isabella’s Mom

For me, these are two of the pictures that most accurately describe what being a Mother to Isabella was like. My friend Angelo Merendino was in town and was taking pictures of us when we were unaware of it. Very rarely are Mom moments captured that aren’t posed. These were real moments. I knew in these pictures that we were at the end and every moment with her was heartbreaking. She didn’t know she was dying but I knew. She would crawl up on my lap and I would hold her, feeling her ribs and every bone in her body. But my expression would not change, my lip would not quiver and she would not know that I was slowly dying inside. I would just hold her and be her Mom until I couldn’t anymore. The thoughts that were running through my head were deafening but the words that came out of my mouth to her were differently entirely. I held it all in from her and just loved her and made sure she wasn’t scared.

That’s what moms do. They sacrifice themselves for you and would do anything to make you feel safe and loved – no matter what.

I can do Christmas now, I can do the day she died. But her birthday and Mother’s Day always get me because those are days about the two of us. She was never too busy on Mother’s Day. She would help organize flowers and gifts and be the first thing I saw when I would open my eyes in the morning.

I miss her like crazy and I’m so thankful I have Grant and Sophia to cuddle up with this morning. Being a Mom is the best job in the world.

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.

********************

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.