How Did This Happen?

Isabella Joanne Santos (March 9, 2005- June 28, 2012)

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It was just six days ago that I lost her but it feels like an eternity. 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 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.

So now here we are as a family of four in a hotel. The kids love the attention and excitement of a trip. But Stuart and I are so quiet. We are with them but not with them. To be honest, the kids are exhausting. We have been crippled by a sick child for so long that we didn’t go all day long with the kids. With healthy kids, who now have your full attention, it is non-stop. Talking, wrestling, cuddling, jumping.. It’s so different for us because one parents was always devoted to keeping things quiet for Isabella. Now that we are playing man on man defense, we are dying. While it’s great, we miss our quiet times because that is what we had for 5 years. Stuart and I crash in bed at night like we have just been with 10 kids instead of 2. It will take some getting used to. Grant tells every stranger that he has a sister that just went to heaven so we have that uncomfortable look at the pool from another parent, or a stranger just making polite conversation and asking how many kids you have or what i do for a living. It all comes back to her . Stuart and I are trying to be sensitive to one other, but at times we are like sandpaper rubbing against each other. When one of us is present in the moment, the other is with her and vise versa. We are feeling so out of place and empty. The blue skies and commotion are allowing me to not see her eyes for a minute so the trip is serving a purpose. But at night I am scared. Scared of that first dream when she visits me or I relive the moment. It only took 2 nights until I had that first dream and have had one ever since. I wake up exhausted because I’m fighting for her all night in my dreams. I don’t know when this feeling will pass or if it ever will. I’m floating along in space doing things, but in my mind I’m still rubbing her little hand, trying to bring the color back.. But the color is not coming back.

Her service is in 2 days. I have been in the front seat for almost five years now and now I want to ride in the back. I can’t make decisions or barely give an opinion. Stuart is amazing, handling every detail of the service as all my friends around me tend to things that need tending to. My closet is a graveyard of pink dresses.. Nothing seems appropriate but I’m figuring it out. Even as I type this I get the chills thinking of Saturday at 2:00 when it all starts. I’m so afraid to see everyone and have everyone see me. I have to hold it together but I’m not sure if I can. I am so broken and I feel like half of me is missing. I still just picture her a couple of months ago at the Make a Wish ball in her gorgeous fancy pink dress with a flower wreath over her head, dancing and singing and carrying her new puppy Lucy and giving hugs and kisses to everyone. How is she gone? How did this happen….



The Isabella Santos Foundation is a 501c3 that has donated over 1 million dollars towards its fight on pediatric cancer. Your donation is tax deductible and helps to fund Neuroblastoma Research and local charities that support families facing childhood cancer.

Running with a Purpose

By Erin Santos

Screen Shot 2016-06-21 at 3.00.16 PM I know the benefits of running. I know that it’s good for your body; it keeps you in shape and is one of the most effective sources of exercise. I have known that forever, but sometimes it’s just not enough to get you outside. I go through periods of time where I run and will stick with it for a while. But, something always gets in the way and I take some fork in the road and I find myself losing motivation.

As the President of a local charity, I was researching what drives people and a reoccurring theme was purpose. Millennials especially are driven by purpose. Not just in their giving strategies but in life. They will take jobs that may not fall in line with their income goals because they feel an attachment to something in the position and feel it somehow gives them purpose. I loved thinking that people were being driven not by financial goals but by helping others, feeling a sense of community, or contributing to a higher purpose.

This research initiated a thought in my head about running. I ran a marathon for a charity in my early 20s. Back when training for a marathon was easier than when you train as a wife and mother. I didn’t know much about the charity. I listened to their stories, met great people and even got a tattoo at the end of the marathon that I regret daily. But looking back on the training, I am not sure if I really pushed myself or blew anyone away with my fundraising efforts. The story didn’t touch me personally and while I felt sympathy for those who were affected by the charity; I still kept the story at arm’s length. I was sympathetic, but I wasn’t sure it ever crossed over to empathy.

Screen Shot 2016-06-21 at 3.00.56 PMI lost my 7-year-old daughter Isabella to cancer 4 years ago on June 28th. It was the most horrifying experience of my life. I imagine it’s like going to the front lines of war and I feel the PTSD from witnessing it first hand every day. I’ve helped grow the Isabella Santos Foundation into a very successful charity that raises money for Neuroblastoma research and it has helped me so much in the healing process. The best part about having a foundation in her name is that she continues to live on through others. This is all you want after losing someone close to you, especially a child. Things were progressing and growing with the foundation and I thought this was how things would be with her charity year after year.

Two years ago I heard rumblings that someone wanted to create a running group for the Thunder Road Half Marathon (now known as the Charlotte Marathon) and the goal would be to train together and raise money for ISF. Since I had done this kind of thing before, I immediately joined the team. It was a small but fierce team with many new names and faces. Some people on the team knew her, but some didn’t. They followed her story and felt inspired to run. She had been gone just two years and it was a great way to take my mind off things and focus again on Isabella’s wish of a world with no more cancer. There were about 20 of us and together we raised close to $34,000.

The following year we grew to 60 runners. It was becoming something else entirely. Each run I attended I would meet new people and learn how they came to know my daughter’s story. The amount of people that never knew her was outweighing those that did. These total strangers were waking up before the sun to run in purple with my daughter’s name on their back. There is nothing more motivating than watching someone whom you have never met, run in front of you as you read, “We run for Isabella, and other children fighting cancer.” It wasn’t their daughter, their niece or their friend. But they were out running for her.

Tim Dream TeamSomething had happened that moved them from being sympathetic to having empathy. The hand they once put up that didn’t allow a story to get too close to their heart was taken down and they embraced our story as their own. They ran their hearts out; they fundraised and cheered for each other. They became a family. She was not only my daughter, she became theirs.

So many times people would tell me about personal goals they accomplished and they only completed it because they were motivated by Isabella. Whenever they thought about giving up or quitting, they new they couldn’t because she never did. It’s an amazing honor to think that even in death you can motivate someone. She was somehow giving them purpose. I’m always blown away by the commitment and dedication you will receive when you have purpose. You begin to accomplish things you never thought you could when you have purpose. This second year team of 60 people raised over $100,000.

I often wonder what is going through their head when they run. Do they talk to her? Do they feel her in the wind at their back? What makes them beat their fastest time? What pushes them to run the extra mile they thought they couldn’t or suppresses the voice that tells them to walk? It’s her. She comes in just when you need her by putting that familiar Taylor Swift song on their running mix. She comes when you think about walking but someone passes you and says, “Keep going for Isabella!” out of nowhere. She comes when you see that dragonfly cross your path or notice someone running towards you in purple. She motivates you because you know you are doing this for her and other children who are fighting cancer. You find purpose in this run.

What these people do for me is something they will never comprehend. I often times feel so screwed up from the grief process or lack of grief process that I have gone through in her death. I put her away in a box and bury it deep inside because I don’t know how to deal. But I know that once training starts in July, I am able to bring her out and allow her to run alongside me. I start to share close personal stories with total strangers because I feel safe with them. We have a common purpose and they are my family. I run to make her feel real again. Erin next to grave DT

There should be more things we do with our life that make something feel real or give us purpose. Purpose can be the most motivating thing when it comes to setting and accomplishing goals and running can be a part of this. I have worked out the majority of my life and oddly, I find myself, at 39 years old, in the best shape of my life. Maybe because in my 20s I was looking for purpose and couldn’t find it. I’m one year away from 40 and I finally found it. It’s Isabella’s Dream Team.

We share a common purpose. She runs alongside us and our goal is to find a cure for cancer in her name. And we will do it, together. This year we are hoping to be 200 strong. Who knows what we will accomplish together, but it’s guaranteed to be one of the most fulfilling things people will do with their life this year.

Find your purpose and run for it.

Learn more about us? Watch our video then email Tom Patania at to join Isabella’s Dream Team, powered by OrthoCarolina.

Want to learn about the Dream Team?

Dream Team

Cruel games and Taylor Swift

Past Caringbridge post from 2012…

We arrived safely from Disney and settled into a beautiful, quiet, clean house with a stocked fridge.  It is really how you should come home from any vacation.  The roller coaster that is Isabella continues to play cruel games with us.  She goes through these moments of a dark hole, to a sit up in the bed with full conversation and food requests.  There has been no pain complaints in the last 48 hours that have required break through pain medication.  She even wanted to sleep in her own bed last night.  We considered the break for a moment but then Stuart ended up sleeping on the floor next to her bed just in case.  This morning she slowly walked downstairs which shocked us all.  She seemed to do well this morning but when hospice came to put her line in, she spiraled out of control.  Shaking, anxiety, nerves.. I just couldn’t settle her.  There was a small discussion that needed to be had without her in the room and she just wouldn’t let go of me.  She was grasping on to me with all of her strength and would not let me go.  I read into everything these days… maybe she knew what i was going to hear and didn’t want me to hear it?  As heartbreaking as it was I had to peel her off of me to discuss her private matter on the porch.  As she watched me through the window I told the nurse.. “She seems really good!  I feel like I’m second guessing things here.. Maybe she might pull through this?”.  I know that the nurse wanted to agree with me, but we were warned of this rally that she would get near the end and that we should not be fooled by this last cruel game that her cancer will play on us.  I was told that most of them rally before they finally commit to the process of dying.  The fact that she now closes one eye to see, indicates that the cancer has spread to her brain.  She has not yet lost some of her abilities to walk, use the bathroom, etc.. but they will soon be taken from her.  I think Stuart and I have just lived for so long being an advocate for her and getting her to pull through when doctors throw in the towel, that it just seems to go against everything we are to accept this.  Afternoon visits from friends and a last minute request to go as a family to a Japanese Steakhouse filled the rest of our day.  But as I laid her in my bed tonight, I knew that hospice was right.  She is trying for the last time to live.. but her body will soon lose the fight.  I feel like I’m coming to peace a bit with the fact that we are going to lose her soon.  The community of people supporting us doubles daily and her reach is growing nationwide.  It seems fitting for her as Isabella always thought that she was a celebrity her whole life, but just wasn’t sure why.  That point was made very clear today when my phone rang with a blocked number.. Taylor Swift was on the other side of my phone and she had heard of Isabella and her fight.  Isabella is a huge fan of hers and a month ago, she would of screamed bloody murder to hear her on the other side of the phone.  But, this disease is taking all the of things about Isabella that made her so wonderful.  It was all should could handle to just lay on the couch and listen to this women she loves speak to her through the phone.  She could barely speak, she just looked at the phone with one eye closed as if she would trying to see Taylor in the phone somehow.  If you could of seen Isabella at her concert a couple of months ago, it would take your breathe away to see her now.  How just a couple of months and a horrible disease can steal more and more things from her every day.  Makes me so sad to see it.  Even the revolving door of loved ones who leave and I know they are thinking it is the last time they will ever see her.  This is my day.. my heartbreak, Isabella’s heartbreak, and heartbreak from everyone we come in contact with.  I can only think that through her life, so many are changed that it will make the difference.. maybe even save another child’s life.  Isn’t that what we all want?  Our life sacrifice. knowing it can save someone else’s?  That is an amazing gift.  One death for the sake of millions?  I know that is what Isabella would want in the end.  To know that because of her, another little girl will not have to miss her last day of kindergarten.  I selfishly wish that my daughter was the one being sparred.  That her last day of kindergarten tomorrow would be filled with laughing and running and playing.  Instead we head to the clinic for a full day of blood and platelets.  Another memory, stolen.  How unfair her life has been, but how beautiful it has been as well.

Who Would She Be…

How am I old enough to have an 11 year old? I’m way too young to have a pre-teen in the house, right? It’s hard to believe that she would be going into middle school next year. That can’t be right.

At a Super Bowl party, we found ourselves at a house that was celebrating an 11th birthday. Their daughter was a friend of Isabella’s and she was as tall as me. I found myself looking at her and thinking, would Isabella have been that tall? Every time I’m around Isabella’s friends I catch myself asking so many questions to the parents.

“What kind of things is she into?”

“What kind of music does she like?”

“Is she into boys yet?”

“Are her hormones kicking in?”


I must sound so interested in their child, but the truth is… I’m just interested in mine. Even this morning I found myself Googling, “What are 11 year old girls into?”. I’m sure this put me on a flagged list with the Government, but really I just want to know.

Grant looks like Stuart. Sophia is a weird mix of us both. But, Isabella would have been me. I crave a vision of what she would look like next to me. Our brown hair would match (if I was currently a brunette), our noses and ears would match – all the way down to our tiny skinny fingers. A mini me if you will, but 24 years younger. Would we fight like cats and dogs, but still enjoy kitchen dance parties when no one was looking? Would we get our nails done together and talk about the drama of her girlfriends or what boy she likes? Would I tell her that she is not going to school looking that way? I’m sure we would have the clothing fights. Would she be smart? Would she be pretty? Would she be wearing braces right now? I will never know.

All I want is answers. I go to bed praying that my 11 year-old daughter will come to me and give me the answers I crave. But instead, I still have nightmares. Just a couple of weeks ago I woke up sobbing. I finally was granted a dream about her, but in my dream she and I were laying in a hospital bed. We were being pushed up and down toy aisles. She laid there on my chest and looked at all the toys that she couldn’t play with. We went up and down each aisle until we came to a room that had a beautiful bed in it. My aunts were making the bed for us. It was the bed we were going to move to where she would die. I was sobbing so loudly that I woke Stuart next to me that night. These are the only times she gets to be in my life – and they are nightmares.

I should be fighting with her in my kitchen, or taking her shopping to buy her the latest cool pair of shoes. I should be driving her and her friends to the movies and listening to them sing at the top of their lungs. I’m sure she would be on her phone constantly and I would lose sleep at night hoping she is not on SnapChat with some boy. But none of this is happening in my life.

My days are filled with chasing Sophia around or watching Grant and his buddies throw the football around the yard. I’m engulfed in the Foundation because it’s my only connection to her that isn’t in the form of nightmares. It’s become my life’s mission to carry her on through the Foundation and hope that what we do has an impact that may even remotely come close to the impact she would have made in my life if she was still alive. My hope is that the work we are doing with the Foundation allows some other mother to fight with her daughter over what she is wearing or take her to get a mani/pedi on her 11th birthday.

Someone should be able to do it, even if it isn’t me

-Isabella’s Mommy

Give the gift of life through a donation to honor Isabella in this special way and help kids fighting today!


IMG_1110Isabella Joanne Santos

March 9, 2005 – June 28, 2012

This is the year…

This is the year.

I don’t know what it is. But I have a feeling that this will be my year. Do you ever have that feeling? I have been feeling it bubbling up for a couple of months now. I can’t tell you what it is, but I’m buying lottery tickets like crazy. (Btw… Powerball is at 400 million dollars right now.) I think it’s the first time in a long time that I’ve taken a step outside myself, looked in and thought – yep, all the stars have finally aligned.

I’ve made a big step in my career. I finally know who I am and what I am good at. I decided to leave the old Erin in the past. The person I was running back to after Isabella died wasn’t me anymore. It was who I was over 10 years ago and it’s okay if that is no longer a fit for me. Never in my life (EVER) did I think that my career would be in the non-profit sector. But, maybe I never realized that people who work in non-profits do it because it speaks to them and really gives them a purpose. This is my purpose and I’m not running from it anymore.

It has also allowed me to get my priorities in order. Ever since I made this decision I feel like my family has fallen into place. I was all over the place, never knowing what was going on with my kids, what city my husband was in or if our house was on fire. In the last month I have been into my kids school, I was organized over the holidays, I’m in better touch with my family and my house is in order. Who knew that one little decision could impact your life is such a way?

I’m excited about work again. So many things with ISF had to be put on hold until after the holidays so we could hit the ground running in January. I found myself barely able to contain my excitement of all that I would do this week now that we were back sitting around the table. All of these ideas and visions I have had in my head for years but didn’t have the time to devote to executing them, can finally come to fruition (I hope).

The Foundation is no longer “just” a 5k race. We are a family of people with common goals and missions who are doing big things to move the needle. We are educating ourselves on the state of Neuroblastoma research, not only in our community, but also at leading research hospitals across the US. We are aligning ourselves with doctors who are refusing to let any more kids in their care, die. Our recent donation is backing a Doctor who told us, “What I’m doing here has allowed 11 kids in the last year who should of died, to still be alive and doing well.” Saving lives. Isn’t that what we said we wanted to do?

New Year’s Resolutions are all over my social media and they all feel the same. Lose weight, get organized, spend less, save more and the list goes on and on. When I researched the top 10 New Year’s Resolutions, I was blown away that making a difference wasn’t on that list. I can’t tell you how good it feels to know this it is my number one resolution and I’m making it a reality.

Is 2016 the year that you want to get involved for a greater purpose? We are starting a volunteer group at ISF and we hope you will join us. If you have ever wanted to be a part of something bigger and make a difference- then this is for you. This is what we are about. Even if it’s just a couple of hours a week or a couple of hours a month… we will take it! We are always looking for new people who are energized and excited to help. The work we do on a daily basis is a series of puzzle pieces that add up to a masterpiece each year and we would love to have you join in this effort. We have some exciting new things on the agenda for 2016 and the time you give is so appreciated and rewarding. In the end- it is people like you, helping us, to make that difference.

So…do you want to be a part of what we are doing in 2016? Email us at and let’s get this ball rolling together.

-Isabella’s Mommy