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Why New York Was Our Home…

September 11, 2015/in 'Why' Series/by Rachel Wood

Day 11

Why New York was our home…

I have to be honest; the thought of treatment in New York was exciting to me initially. Not only were we going to get the best treatment available, but we were also going to have an amazing experience in the process. I had to been to New York a couple of times but the thought of going there with a child, let alone a sick child – had me a little nervous. Do they have car seats in cabs? Will I be able to get around the city with her? Will the germs and crowds of New York make things dangerous for her? And most importantly, what will Isabella think of New York?

It took some time to get settled. The hospital was huge and a little cold to outsiders. The families in the hospital ran in clicks based off backgrounds and religion. Even the Ronald McDonald House dining room was separated by groups of families that had history together. We were definitely outsiders in this city and we could feel it.

This separation within the world of cancer in New York didn’t stop us one bit. Because we were loners, we took it upon ourselves to take in everything we could in the city. Chemo was given in a backpack so she and I would strap in and explore the world around us. We would spend days as I pushed her in the stroller to Central Park, Grand Central Station, Times Square, Bloomingdales, the American Girl store, you name it. We weren’t afraid of anything. We rode the subways and she hailed cabs. We visited the Statue of Liberty, Rockefeller Center, Ground Zero and lit candles in St. Michaels Cathedral. If there was something to see, we saw it.

We met amazing people in New York and developed our own little New York posse. We had people to eat dinner with; people to grab coffee with and even people that would sit with Isabella if one of us needed a minute to ourselves. Isabella loved the people we met and considered them part of her family.

For three months during a brain relapse, we sublet an apartment on 86^th street by Gracie Mansion and called New York our home. We were on one of the highest floors and had an amazing view of the city. I specifically remember being there one September 11^th and seeing the lights of the twin tower shining up in the sky as Isabella and Grant pressed their noses against the glass in awe. We watched all the documentaries on the couch and everything had a different feel to it now that it happened in “our city”. We made sure to make our way down to Ground Zero that week and spoke about it best we could with Isabella. It was so hard for her to understand. But, it wasn’t the first or last time she was exposed to tragedy and adult situations.

New York was such an amazing city for us because it provided her with the memories that clouded the pain. Nothing we did mattered during the day as long as we could go the American Girl Store and buy a new outfit for her doll. We would try on shoes at Bloomingdales, grab bags of candy from Dylan’s Candy bar and eat at our little pizza place around the corner where they knew Isabella. After dinner we would take stroller rides around before bed and take in the city around us until she fell asleep. These walks would allow us, if even for a minute to forget was happened that day, or what was in store for us that next morning. We found so much comfort in our new home, despite what we were going through.

New York was a gift to us during all the horrible years of tragedy. It’s hard for us to go back because everywhere we turn is a memory of her. We want Grant and Sophia to experience it just as Isabella did and plan to bring them there over Christmas to see the Christmas tree in Rockefeller Center and see the Rockettes, just as we did with her. We want them to love the city and know that their sister grew up here, she was a New Yorker and we will always refer to it as one of our homes.

-Isabella’s mommy
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We Should All Want to be Like Her

June 27, 2015/in 'Why' Series/by Rachel Wood

Written by Erin Santos, President of The Isabella Santos Foundation

I saw this picture of Isabella in our new video and it stopped me in my tracks. One of my many awesome abilities is my long and deep memory. In the memories of Isabella, it is a a blessing and a curse. Many of you will look at this picture and think of how happy she was. And you would be right. She was happy here. She was one of the happiest children you ever met. What you don’t see in this picture is the struggle. This was Monday, September 19, 2011. We were in New York City for dreaded quarterly scans. We tried to make our time in NYC exciting for her and this day was no different. We were given a private tour of Magnolia Bakery and private cupcake decorating party. She brought her American Girl doll with her who also liked to decorate cupcakes. She and her doll, Lanie proceeded to decorate cupcakes with hot pink icing and every color of sprinkle in the rainbow.

Behind the scenes she had every symptom imaginable. Headaches, vomiting, stomach pains, dizziness and blurred vision to name a few. I was anxiety ridden because I knew something was wrong. I took a call during this cupcake session from a nurse who told me she was scheduling a neuro consult for Isabella the next day. I felt sick. I found out the next day that the cancer had spread to her brain, her bones, her bone marrow, areas in her chest and abdomen. She was dripping in cancer. The disease in her brain was bleeding and we should be expecting seizures any day. We should go home, be with our family and call our home health care nurse. This was it. Just yesterday she was decorating cupcakes with a smile on her face.

Look at her face. Then look at it again and tell me if you see cancer in that picture.

That’s the thing about Isabella. She chose to dance in the rain instead of waiting for the storm to pass. She lived every day like she was happy to be alive. As a matter of fact, 4 days after this picture was taken – we held the 4th annual 5k for Kids Cancer and she danced and partied until the sun went down. She lived 282 strong days after that death sentence we received.

The longer she has been gone, the more I have gotten to know her. I watch Sophia become obsessed with her in her daily life. It gets scary at times to watch her be so consumed with everything in our house that is Isabella’s. She wears HER clothes, she watches HER High School Musical Movie on HER iTouch, and listens to HER Taylor Swift CDs as she falls asleep in her bed, on HER Pillow Pets, with HER blankies. I have to go to Isabella’s room each morning, open her door, and hear that same creak in the door that I heard for years when waking her for the hospital. I have to go over to her bed and see a little girl in kitty pajamas, covered in pink little blankies and wake her. But instead, this healthy little girl has hair… this time it’s Sophia.

For Sophia, Isabella has become the ultimate role model. She sees pictures of her doing amazing things with this bright red hair and her big smile. She sees her enjoying every minute of her life in pictures. Sophia doesn’t know Isabella with cancer or being defeated. People talk so positively about her with admiration. The story of Isabella has been built up over the years so much that Sophia wants to be just like her. I struggle with that because I want Sophia to be her own person, and then it hit me:

I want to be like her too.

I want to leave a lasting footprint. I want to inspire people. I want to make a difference in the world. I want to leave a lasting legacy and live a life that is fulfilling and rewarding. I want to think that my time in this world was used towards a greater purpose and lives were saved because of actions I made. I want people to see my picture and think I was truly happy and no matter what was going on in my life, I was going to fight through it and do something monumental with my day, my year, my life.

We should all want to be like her.

Her fight and her face inspire me every day and for this reason I choose to continue raising money to make a difference and do what she would be doing if she were alive today. She would want to save her friends and make the world a better place.

They told her she was done and she wasn’t. And I’m not done either.

DO. SOMETHING.

Please give to this amazing cause and ask your friends to do the same: http://www.firstgiving.com/fundraiser/isabellasantos/8th-annual-5k10k-for-kids-cancer

[youtube_video] sH3nELoFQHU [/youtube_video]

Fight Cancer. Run with us.

May 4, 2015/in Isabella's Dream Team, ISF Events/by Rachel Wood

ISABELLE’S DREAM TEAM – 2015

By Tom Patania

On March 9th, we unveiled the details for Isabella’s Dream Team – 2015. This date was picked specifically because it would have been Isabella’s 10th birthday. Not only is she the Founder of ISF, she is the inspiration behind this team. Our focus is about Isabella, and following her dream of creating a world with “no more cancer.” We continue the fight for her and the many children that are also battling cancer.

Last year, in our inaugural year, the team was filled with passionate and selfless individuals that came together to surpass our wildest expectations. The 2014 team raised $34,000. This program continues to be a volunteer based, grassroots effort without the high overhead of a large charity. We ask each participant to fundraise a minimum of $500 (but our hope is that each will shoot for much more than that). What we lack in advertising dollars we make up for with heart and community.

“Though she be but little, she is fierce.” – Shakespeare

In an effort to grow our team and our impact, we are recruiting runners and run/walkers that want to join our mission of helping make a little girl’s dream come true.

This year each athlete has a choice. We will be training for two races: Rock N Roll Savannah (Nov 7th) or Thunder Road (Nov 14) half or full marathons. With this being a volunteer effort, we ask that each participant sign up for their race of choice. Our hope is that the athletes that choose to run RnR Savannah will take part in supporting and cheering for those that are running Thunder Road, and to support our Charlotte community. The ISF10K/5K for Kids Cancer (Sept 26th) will be a part of our training program, so each team member will want to sign up for that race as well.

Official team training will start the week of July 13th and training schedules will be available for both distances. Included in the training schedule will be speed & hill workouts (Blakeney area) and Saturday long runs (various locations – early morning). I highly encourage all of you to attend as many team runs as possible.

TEAMWORK MAKES THE DREAM WORK

How to join the team?

Email Coach Tom at tom@isabellasantosfoundation.com with which race and distance you’re interested in and your t-shirt size.
Create your First Giving fundraising page by selecting: Isabella’s Dream Team 2015
- Be sure to make this page personal. We do not ask you to cover the difference if you cannot hit $500. We only ask for your best effort.
Register for your race and distance: RnR Savannah or Thunder Road
Get Social: tag five friends to let your network know you’ll be running with us this summer.

August Firstgiving Promotion!

August 11, 2013/in ISF Events/by Rachel Wood

Ready. Set. Go!

August can feel like December with the ramp up of Back to School – the calendar books up in the blink of an eye and summer seems like a distant memory before it even ends. Plus, we’ve been busier than ever getting ready for our September 21st 5k (Go to www.5kforkidscancer.com to register!) We can’t wait!!! Those are our excuses for posting our August FirstGiving Promotions almost halfway through August!

We’ve mentioned in previous posts just how important FirstGiving is to ISF. Last year we raised over $100,000 through pages YOU created. We’re officially halfway through 2013, and we’ve already raised $33,000 through FirstGiving – our goal is $100,000 (33% to goal!). We know we WILL get there thanks to the constant support from old AND new friends. August and September are always our highest giving months so we are excited to see where we will end up!

To thank you for all of your efforts this month, we’ve set up some pretty fabulous prizes – we like to call it the ISF 5K Swag Bag (drumroll, please…):

If you raise at least $1000 on your Firstgiving page by August 31^st, 2013, you will be entered to win:

A $100 Dicks gift card (did we mention it’s Back to School AND ISF 5k time?? How many tennis shoes are YOU buying this month!!); Thank you to Dicks Sporting Good for donating this to us!
Two entries to the ISF 5k for Kids Cancer; and,
Five raffle tickets to use at the race. You will NOT BELIEVE the items that are coming in for the raffle and silent auction so these could be your winning tickets!

Even if your name isn’t pulled from the hat, just by raising $1000 you will have access to our Firstgiving VIP tent that will be at the race. This includes a delicious hot breakfast, piping hot coffee, time to socialize with new and old friend, AND bragging rights for the entire day.

For every $1000 you raise, your name goes in the bucket for these prizes again and again. That’s your incentive to go beyond your monthly goals – how many times will your name be entered??

Remember that raising money has never been easier. Use Facebook, Twitter, Instagram, Pinterest – whatever social media site you adore this month to get the word out. Tell all of your friends just how easy it is to set up a Firstgiving page for ISF. Let’s do this together – spread awareness and beat this Big Bad Thing for good.

Thank you from everyone here at ISF and as always, Happy Fundraising!!

July FirstGiving Promotions!

July 5, 2013/in ISF Events/by Rachel Wood

We love FirstGiving!

Can you believe it’s already July? I know for us with kids, the summer is going way too fast. Just this morning I took a look at the calendar and realized that the race is less than three months away! Yikes! All of our planning is coming together and things are going to be amazing yet again on race day.

One of the things that we like to spend our summer on is the ramp up of our FirstGiving fundraising pages. FirstGiving has been an amazing resource for us each year with last year topping out our fundraising just over $100,000. The entire race day brought in just over $200,000 so this is just about half our our total fundraising efforts each year. Traditionally, year after year we find that the same pages are created by the same loyal fundraisers. But this year we are seeing a dramatic change in the pages that are being created. We are so excited to see new faces creating pages and how easy it has been for them to get donations too. I know what you are all thinking, “I HATE asking people to donate!”. It’s not an easy thing for anyone to do. But luckily with social media, email, etc.. the asking part is much easier than the old days of making calls or going door to door. Now you just put your page out on your FB or twitter status and people just give.. pretty easy. This year we already have $20,000 raised and we are still 3 months away! Love it.

How cute are these shirts, right?

With summer upon us, seems like everyone I know is relaxing somewhere on the beach (if the rain stays away that is..). So for our July promotion, we can’t think of a better way to reward you for your help than by enhancing your beach relaxation and showering you will cool ISF gear and gifts that help enhance your summer. We get so many requests for our cool ISF shirts and merchandise so here is your chance to score it. And if your fundraising really takes off – we reward you even more!

Without delay, here are our new July fundraising promotions. Woo-hoo!

1. For anyone that creates a NEW FirstGiving page this month and raises at least $250 by July 31st, we will send you an awesome ISF package complete with our new tank or v-neck for women or polo for you guys out there, along with some additional ISF goodies. Click here to get started on your page!

2. For our current FirstGiving fundraisers, if your page can reach $500 by July 31st, we you be entered in a raffle to win a new Kindle Fire HD Tablet! For each $500 increment you raise, you will be entered again too. So, raise $1500 by July 31st – your name is entered 3 times! Soak up some of summer rays by reading the newest novel or stick this kids in front of a movie while you enjoy a glass of wine on your porch swing. 🙂 Ahhh.. sounds relaxing to me!

Soooooo relaxing

3. For ANYONE that donates to FirstGiving in the month of July, you too will be entered in a raffle to win the same Kindle Fire HD Tablet. We know that some people aren’t comfortable creating their own page but still want to give, and we want to thank them for donating. This is also a great promotion that you can mention when you tell people about your own fundraising page. Just by having them donate, they are entered to win. Pretty cool huh? Want to give now? Visit the page created in Isabella’s honor.

We are so excited to see this promotion take off and will be watching for progress the entire month. As always, know that we are here to make things as easy as possible for you so contact us if you would like us to set up your page for you. Our amazing Development Director, Maitland is just waiting for you to contact her so she can set it up for you. 😉 So email her at info@isabellasantosfoundation.com for assistance and pointers on how to make your page successful.

Stay tuned for our upcoming August promotion as well as details on how you will be rewarded yet again in September by how much your page has raised with amazing prizes, giveaways and VIP experiences. We are crossing our fingers that we can pass the goal set last year of $100,000 and with your help, we think we can do it.

All of us here at the Isabella Santos Foundation hope that you continue to enjoy your summer. Be sure to cherish your families and the memories that you are making together. Don’t forget that the Isabella Santos Foundation 5K for Kids Cancer will be held on Saturday, September 21st in Ballantyne Corporate Park and registration is now open so get your entire family registered today!

Happy Fundraising!