Tag Archive for: pediatric cancer foundation

Magical Moments

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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.

LETS BECOME A WISHMAKER TOGETHER IN HONOR OF ISABELLA!

It Made Miracles Happen For Us

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Written by Erin Santos, Isabella’s Mom

I remember that I hated when someone mentioned it to me.  We were about a week into our initial diagnosis and I was sitting in a playroom with my 2 year old attached to an IV pole.  “Have you asked for her wish yet?” a woman said to me.  If I had a weapon I would of hit her with it.  How dare she mention this to me one week in?  I didn’t know if my daughter was going to live or die and you are trying to tell me to call Make-A-Wish.  That organization is for dying kids, and she is not dying.

I could write a book on things you should not say to a parent in these situations.  This woman was obnoxious and out of line, but in the end she was right. Make-A-Wish was something we should look into, when we were ready.  When we were, we discovered that Make-A-Wish was not for dying children.  It was for children who had life-threatening diseases but not a death wish.  So we called, we asked Isabella what her wish would be, and they granted it.

For those of you who knew Isabella, you knew what this wish would be.  Of course it was to go to Disney World because she was all princess.  We had never been and we knew it would be hard to take her and Grant given her medical condition.  We had some stipulations of course because in all things, we knew what was best.  We asked to stay close to the park.  We had kids who napped and driving back and forth wasn’t an option.  She wanted to go Trick or Treating there so we got tickets to the Mickey’s Not So Scary Halloween.  She wanted to meet princesses oh and we forgot to mention, Grandma is joining us on our trip.

Well… little did we know this Disney trip would ruin Disney forever.  J  Limo rides, rooms on the concierge floor at the Grand Floridian, overlooking the castle and every single thing her heart desired.  Grant was not left out of the festivities either – he was just as special.  Each day at the park was filled with meet and greets where she went to the front of every line with her brother.  They dressed up as Minnie and Mickey for Halloween and fell asleep together in a stroller every night.

Isabella was born to give sound bites.  She would hug you so tightly as we watched the fireworks each night say, “this is the best day of my life”, or “dreams really do come true Mommy!”.  I mean really.  It was crazy to watch because days before she could barely move in the hospital due to the toxic chemo.  It was like this trip brought her back to life in a way.

Disney became the thing we knew we could dangle in front of her.  I can’t tell you how many times we would unhook her IV in New York City, fly through Charlotte and pick up Grant (and eventually Sophia) and be on our way to Disney.  I would get calls from her oncologist while we were watching the parade by Cinderella’s castle with instruction on how to take her to the nearest hospital to check her blood counts.  We would walk through the park, occasionally finding a trashcan where she would hack up her latest side effect before getting on the next ride.  The girl was an animal.  She loved Disney – and it brought her back from sickness time and time again.

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.

Make-A-Wish didn’t just give her a Disney trip.  It gave her some of the BEST days of her life and some of the best memories of mine.  For this reason, I can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday.  If she were here today, I know it would be her wish to pass this experience on to another child.   So that is what we will do for her.

Let’s Become a WishMaker Together in Honor of Isabella

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.

New Year, New Look, New Life

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Written by Erin Santos, Isabella’s Mommy

January 1st, 2018 just seems unreal.  What seems more unreal is 10 years of ISF behind us.  We started out that first year when Isabella was diagnosed and raised $7,000.  Our 2017 books are closing and we hit the goal we had in place of 1 million dollars raised.  Unbelievable.  It makes me wonder where this little “project” of ours is going to go.  With an even bigger goal in 2018, as well as a new treatment room in construction, in her name, opening its doors later this year, I know there is so much more ahead of us to accomplish.

With growth, comes change… some good and some bad.  Isabella will always be the true Founder of this organization and her face will forever be tied to all we are doing.  However, as a growing foundation, we have realized that giving in her honor the last couple of years has propelled us to success we never would have imagined.  But now, we want to refocus our organization on the children we are trying to save today.  I have always said there is an Isabella in every city.  And as we expand into new cities and markets, it is becoming painfully obvious that there are children everywhere who are in the fight of their lives.  We want to start introducing you to these children, their families and their stories.  They need your help to fight this disease that still has a survivor rate that would break any parent’s heart.  We also want to start educating our supporters on other rare cancers that can benefit from the treatments we are funding.  Neuroblastoma is scary, but there are other cancers out there with ineffective treatments and without organizations like ours in their corner, kids have very little chance for a cure.  Every child’s life is worth saving and we want to spread our wings a little more with your help.

I’m excited about the upcoming changes in our focus because even I need to put my memories of Isabella in a safe place.  For years I told myself that we were different.  We could handle loss and turn this horrible tragedy into something that could potentially change the lives of others.  While we are doing this, unfortunately, it came at a price.  Death changes people and we are not exempt from this.

I always look back at the person I was before cancer, during cancer, and even during her death.  I’ve referred to it as a movie I watch because that person seems unrecognizable to me now.  Her death has made me independent and strong, focused and determined.  But it has also made me closed off and cold at times.  I can be a hard person to get to know because her death has built a fortress around me.  I find solace in being alone, my anxiety can take me over completely and I find at times that I want to run from everything.  While losing a child makes you realize how important every minute is with your other children, sometimes it comes at a price to others in your life.

I don’t know why we hurt the ones we love the most.  We just do.  And sometimes we can’t stop doing it.  Death changed me a lot, and it changed Stuart too.  The person you once went to battle with becomes the new battle.  You find yourself just trying to get through the day and the other person becomes the casualty of this.   One thing remained consistent through our grief, our love for her, our kids and all that ISF is accomplishing.  But, I think we have just hit a time in our life when we want to find happiness again, and sometimes that happiness isn’t together.

While I feel like this is a very personal subject, I have never shied away from my life being an open book.  I felt like it was important to let the supporters of ISF know that nothing is changing with ISF.  Even though Stuart and I are no longer together, we still stand together and will do everything we can to continue to grow the foundation and make a difference in her name.  I love when we are together at an event and people say to me, “You would never know about the changes behind the scenes in your family.  You guys seem stronger than ever.”   Maybe because the love that kept her alive for so long will always be there for each other because we know the other one has been to hell and back.  There is too much history to be any other way.  So that is all you will see.  We will always be together for her.

We hope these changes will not impact the support for all we are doing together.  My belief is this is just a new start to a big year ahead and we are so proud of what we have accomplished.  This is just the beginning… maybe just a new beginning.

I HOPE…

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There are so many things we HOPE for.  This poem (author unknown) sums up all our HOPES and the reasons we continue to fight pediatric cancer.  We posted this poem earlier in the year and not only did it become our most popular post of 2017, but of all time.  As we wrap up our 10th year of the foundation, we thank you for fighting with us, for supporting us, for crying with us, for believing in us…. and most of all for helping us continue to keep Isabella’s legacy alive as we fight childhood cancer.  It started with a girl… and she is changing the world!

We hope you and your family have a wonderful (and safe) New Years Eve and look forward to conquering our HOPES together in 2018.

Isabella after brain surgery

I HOPE…

I hope you never have to hear the words, ‘Your child has cancer.’

I hope you never have to hear, ‘The prognosis is not good.’

I hope you never have to prepare your child to undergo radiation or chem

otherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, ‘Don’t worry Mommy, everything will be okay.’

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the ‘cure’ you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

‘It’s going to be okay, Mommy.’

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor…crying quietly, after just being told, ‘There is nothing more we can do.’

I hope you never have to watch a family wander aimlessly, minutes after their child’s body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child’s head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, ‘It’s going to be okay Mommy.’

I hope you never have to face the few friends that have stuck beside you and hear them say, ‘Thank God that is over with,’…because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI’s and you try to get your life back to ‘normal’.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words…

‘The cancer has returned’ or ‘The tumor is growing.’

And your friends become even fewer.

I hope you never have to experience any of these things…Because…only then…

Will you understand…

(author unknown)

ISABELLA SANTOS FOUNDATION RAISES $30,000, GIFT SUPPORTS NEUROBLASTOMA RESEARCH AT NATIONWIDE CHILDREN’S HOSPITAL

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Columbus, OH – 12/6/2017

The Isabella Santos Foundation has raised and donated $30,000 to Nationwide Children’s Hospital to honor the memory of their daughter, Isabella, and to advance pediatric cancer research.
“We are very grateful to the Isabella Santos Foundation for their generosity and dedication to supporting the research that is so important to so many of our families,” said Steve Testa, senior vice president and executive director of the Nationwide Children’s Hospital Foundation. “This gift helps us continue to discover new ways to deliver the best possible care to our patients, who come to Nationwide Children’s from across the country and around the globe.”
This generous gift was raised during a silent auction at the Isabella Santos Foundation’s inaugural Ohio chapter event, “Cocktails for a Cure,” in August. Attendees gathered to learn about pediatric cancer research, treatments and programs that impact local children in the central Ohio community. All of the proceeds from the event benefitted neuroblastoma research at Nationwide Children’s.
“We are thrilled to have expanded our organization into Ohio and Nationwide Children’s,” said Erin Santos, president of the Isabella Santos Foundation and Isabella’s mom. “This event was part of our one million dollar goal this year, and next year we look forward to doubling our impact and moving the needle forward on pediatric cancer research, honoring Isabella the entire way.”
The second annual Columbus event will be held in May 2018.
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About the Isabella Santos Foundation
The Isabella Santos Foundation is a tax-deductible 501 (c) 3 that was created in honor of Isabella Santos, who fought Neuroblastoma for over 5 years. The goal of the Foundation is to raise money and awareness for Neuroblastoma research, provide financial assistance to families with children who are suffering from cancer as well as provide financial support for organizations that support children with cancer.
About Nationwide Children’s Hospital
Named to the Top 10 Honor Roll on U.S. News & World Report’s 2017-18 list of “America’s Best Children’s Hospitals,” Nationwide Children’s Hospital is one of America’s largest not-for-profit freestanding pediatric healthcare systems providing wellness, preventive, diagnostic, treatment and rehabilitative care for infants, children and adolescents, as well as adult patients with congenital disease. Nationwide Children’s has a staff of nearly 13,000 providing state-of-the-art pediatric care during more than 1.4 million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s physicians train the next generation of pediatricians and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded freestanding pediatric research facilities. More information is available at NationwideChildrens.org.