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 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)

Grief Shocks…

It will hit you like a rock – how so very MUCH you miss someone, your breath catches, your tears flow, and the sadness can be so great that it’s physically painful. Like the wind knocked the air out of you. The aftershocks of losing someone, even if it’s been five years… the grief shocks.

The loss of a child is a grief that lasts forever. Grief comes on in waves, especially during holidays, anniversaries, and birthdays. There will always be another year older that she should have been, her handmade ornaments will always be placed on the Christmas tree by someone other than herself, and the empty chair at the holiday dinner table will never be filled.

Isabella in Chistmas Jammies

Last week we ran into Mrs. Chrissy at lunch. As many of you know, Chrissy was Isabella’s best friend. Yes, Chrissy is an an adult… but if Isabella wasn’t with her parents or grandmother, she was with Mrs. Chrissy. They did it all together. We exchanged small talk before deciding to all sit down over lunch to catch up. Immediately her lip started quivering and her eyes teared up. She started to explain that she has been doing so well until this past week… she is tripping all over Isabella. Memories hurt, especially during this holiday time. Memories that are causing grief shocks.

“I laid in bed and decided to pull out my Sudoku book, it’s been years since I have brought myself to play. I open up the book and who was the last person to work on a Sudoku puzzle? Isabella. Its like she is making sure I don’t forget her.”

Isabella, Grant and Sophia in Christmas Jammies

Isabella was Chrissy’s shopping partner. Especially during the holidays. Chrissy even bought Isabella a Hanukkah outfit, just an excuse to buy her a pretty dress. Pictured here is Isabella with Grant and Sophia… in Christmas pjs that Chrissy bought them. Chrissy went on to mention that she still hasn’t been able to put up a Christmas Tree in her house since Isabella died. She continues to tend to her memorial site at Calvary Church and took Isabella a Christmas Tree instead.

Grief looks so different on everyone. No grief is right and no grief is wrong. And no amount of time, even if it has been five years, will change the way one feels. Our hearts go out to all those grieving and tripping over their lossed loved ones this holiday season. We hope your grief shocks become a little less intense and you can breathe in the moment of the season.

Give a tax deductible contribution in honor of someone special who is currently fighting cancer or in remembrance of a loved one who lost their battle. It’s a form of action and beautiful memory.

DONATE: isabellasantosfoundation.org/donate-to-isf/

(Remember that many companies will match your contribution. A great way to increase your impact.)


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.
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.

Healing Comes In Many Forms

Isabella’s mom and Dr. Kaplan

It’s understandable that a mom would fall in love with the doctor who is trying to save their child’s life right? For years, Isabella’s mommy put their pediatric oncologist, Dr. Kaplan, on a pedestal. She remembers exactly what he was wearing the day she met him and could barely be in the room without sweating through her shirt due to nerves. They had a budding cancer romance.

“Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.”
Pictured here is Isabella’s mom with Dr. Kaplan at the Levine Children’s Hospital holiday party last night. Through this picture alone you can see that healing comes in so many different forms. For this cancer mom, she can endure conversations with her ‘oncologist boyfriend’ without anxiety attacks and can laugh over the romance she thought once was… and she can reminisce about Isabella.
Read more in the below blog article that Isabella’s mom wrote over 2 years ago detailing her cancer romance with Dr. Kaplan…

WHY I LOVED HIM (written by Erin Santos, Sept 4, 2015)

I have loved people in my life for a number of reasons. But this love was different than anything I have ever experienced. This love was built out of trust, admiration and hope for saving my child. You would hope that love should flow both ways and for the first time in my life, it didn’t – and I didn’t care.

October 4, 2007, he came into the room and introduced himself. He was 5’9, brown hair and glasses. He wore khaki pants with a rope belt that secured his pants that didn’t fit properly. A green shirt and tie that looked like the type you bought together in a box. His hand extends, “Hi, I will be your daughter’s oncologist. I’m so sorry about the news you received today.” This is the standard greeting they learned to give us during this time of sorrow.

As her treatment started, we saw him regularly. Every time we would come in, he would be waiting on us. “Hi honey,” he would say to her as he placed her hand on her back. I always got a firm handshake and a smile, very serious business. Isabella slowly let down her guard with him and started to feel comforted by his presence.

The days tuned into weeks that turned into months. But through this journey, I was starting to think he had been in our lives forever. He always knew just what to do and when to do it. I trusted him and more importantly, she trusted him. This was the man that was going to save her.

Isabella began to see him as family. She would spend time drawing pictures for him or do craft projects that she would set aside to bring up to the clinic to leave on his desk. My favorite is the picture she drew of the three of us holding hands, some weird new family we had developed into. She began to feel a level of peace with him and she knew he wouldn’t hurt her, if anything… he would make her feel better. We were a team the three of us and I could tell she adored him.

I began to trust no one or no treatment plan unless he was behind it. New York would pass down instructions of what we were to do. None of it would start until I talked to him and had his blessing. “Do you think this is the right thing to do? What would you do if you were me? How do you think the cancer will react?” I was grasping for his approval and sign-off at every turn. I engulfed myself in learning every piece of her treatment plan and could rattle off blood count numbers or medicine doses without even thinking about it. I yearned for him to know that I was knowledgeable about what was happening because in my mind I told myself that it would somehow give us an edge.

I even changed my appearance in a way that showed that I was “put together”. I’m not one of those moms who sulked around in sweatpants with no make up on. I was in better than those moms. I had my shit together. When he would come on rounds, I found myself being nervous or posing when he was in the room to seem unnerved by him or what he was telling me. I wanted him to trust the decisions that I was making just as much as I trusted his. I wanted him to think that I was more than capable to act when it came to her care than these other moms.

After years of working side by side in her journey, I started to know his footsteps coming down the hall. She and I could feel his presence before he even arrived. And I began to know the look on his face or the tone in his voice that would tell me that we were safe or we were in trouble before the news even hit.

Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.

When we reached the point of making the hard decisions, I felt that he and I would come up with a plan on what was best for her. He and I were determining her fate. My husband who left the primary care up to me would often get second hand knowledge of the plan that he and I already determined. It would be positioned in a way that always made him feel that he was a part of the decision. But I know that our decision had been made earlier in the day between the two of us.
I always knew in the back of my head at some point that she was going to die. People would tell me that she is going to be the one to beat it. But, I knew that she wasn’t. It was just a matter of time and options, and our options were running out. I couldn’t imagine what the dying process was going to be like for her. I just knew that we would somehow all figure it out together. He would walk along side our family, holding her hand across this invisible line, making sure that it ended with him just as it began. But, as always in cancer – things never happen the way you want them to.

The call we got from him in June 2012 that revealed the cancer had spread to her bones was the last time I spoke with him before she died. Due to unforeseen family circumstances, he was not available to us the last month of her life. We received no call, no card in the mail. I couldn’t understand him not being a part of this process in the end. This was his child too and she had fallen through the cracks and was dying without him.

The next time I saw him was at her funeral. I saw him out of the corner of my eye shaking my husband’s hand. I wondered what typical doctor response he was giving him that he learned after all these years of losing children.
I waited for him to come over to me. I felt sweat start to form out of every pore on my body. What would he say to me? I wanted to hug him and sob over our failure and have him reassure that we tried everything we could possibly do together to save her.

Instead, he shook my hand. “I’m so sorry for your loss.”

And in that moment I realized. The love I had for this man was one-sided. She wasn’t his child that he was trying to save alongside me. She was his patient. I was her Mother. He is a doctor and this is the business he is in. His handshake was firm, but it told me everything I needed to know. I tell myself that it would be completely unprofessional for him to hug me and cry. All the years of mentoring in his position must of told him to compartmentalize these situations or you will go down in the flames of depression each time you lose a child. But, I swore that she wasn’t just a child to him, she was different.

I couldn’t see him for a couple of years without going into a full-blown anxiety attack. I could feel tears forming and my stomach would be sick when I saw him coming over. It was unfair of me to put him on that pedestal if he were the God that was going to save her. I always craved that conversation that I wanted in the end. But that conversation never came… and I finally began to see him for who he really was…just her doctor.

-Isabella’s mommy

Give Back to Families Away From Home During the Holidays

Holidays can be difficult for families with a child fighting cancer. While many of us continue with our family traditions, many families will have to spend their holidays away from home. Ronald McDonald Houses across the nation are a place for families to stay, feel comfortable and feel safe. A home away from home.

Here in Charlotte we are grateful to have the Ronald McDonald House of Charlotte and their incredible staff. Locate your local house to inquire about what you can do to give back this holiday season. A couple ideas:

1. Cook dinner for families staying in the house. This is one of our favorite things to do as a group. Cook as a team from work or as a family. You will have so much fun!

2. Ronald McDonald houses have an ongoing Wish List of items they need to help the house run day to day. Toilet paper, deodorant, trash bags, ect. Pick some items from the list, take your child to help you shop, and drop off at your local Ronald McDonald house.

3. Do you have a business with event or sports tickets? While in town, families need to get out of the house. Donate your basketball or play tickets to help keep families keep their mind off the reason they are in town.

Isabella and her family stayed often at the Ronald McDonald House New York while being treated at Memorial Sloan Kettering Cancer Center. Ronald McDonald Houses play a significant and important role for families and we appreciate everything they do for communities.