Why I Regret It

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 8 QuoteDay 8
Why I regret it…

How do you make a decision on remains? How do you make a decision on a child’s remains? Questions like these are horrible and they are ones I never thought I would be making at the age of 35. The truth is, there is no right decision. I think that I made the decision based off what I wanted for myself. I had to think that when I’m gone, I’m gone. Light me up, put me in some box (hopefully a decent looking one), and take me to a beautiful place. Let the wind carry my ashes and scatter me somewhere I love. I don’t want to be put in a box in the ground and decay with the bugs. I especially don’t want to be put in some marble kitchen counter top looking apartment home for ashes. Creep. Out.

But when it’s your child, you just can’t do that.

There is no discussion with them on what their wishes are. Their only wish is not to die. They can’t grasp the concept that someone is doing something with you when you die. To them, people are just gone. Grant and Sophia still don’t really know what is going on behind that name plate when we visit her. Lots of questions like, “How did she get in there?” or “Who are all these people with her?” “How can they all fit in there?” Sophia still tries to peer into the holes and walks around it like it’s some magician’s table that has a trap door somewhere. Eventually we are going to have a horrible discussion with them on what actually happened. I don’t think it’s going to be pretty. I can’t imagine they are going to be comfortable with what we decided, and it may truthfully scare the shit out of them – or even worse – they’ll hate us for it.

I’m not really sure if we had another good option. I just could NOT pick out a casket. So much of that seems worse. Maybe it was all those years of watching Six Feet Under on HBO that wigged me out about the whole death process. Or those horror movies about people being buried alive. People have nightmares about that, right? Although I have to say that watching someone get burned alive on Game of Thrones makes me want to sob like a baby. Why did I do that to her?

Sometimes I miss her so much that I think about taking her box from the Calvary cemetery and hiding it in my house; just so I know she is here with us. I wouldn’t tell my family, it would be my little secret. Jesus, I sound like a nutcase. I really only thought about this once last Christmas, and I eventually would have put her back…I think.

By cremating her, I have lost the chance to ever lay with her. But really, what am I going to do? Bring a blanket and pillow out there? Do I think I’m going to bring a picnic lunch and sit out there on top of where she is? This is the really sick shit that goes through my mind sometimes! At least I would know that she was under me though. For some reason that brings me comfort.

I felt like I knew the right thing to do, so that is what we did…and now I regret it. Somehow I feel like if we chose the other path, we would have regretted that too. Point of the story is there is probably no right way to handle a child’s death. Her entire journey was a series of split second decisions you have to make and then deal with the repercussions of it your entire life.

I wish I could have been making other decisions like what color to paint my kitchen, or if I should check out that new Meryl Streep movie or wait till it comes out on RedBox. Instead, I’m in my 30s and deciding on how to ultimately end a child’s existence. That is some F’d up shit right there.

-Isabella’s mommy




Why I Want To Come Back

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 7 quoteDay 7
Why I want to come back…

For years I wanted to run from the Foundation. It was something I was pushed into and I loved what it was accomplishing, but I needed more in my life. After she passed away it was hard for me to do the work. It felt meaningless and silly. The main reason for all of this was Isabella and it just didn’t feel right asking if my cause was gone. So I started to step away. I was able to bring an employee in and keep things afloat so that I could figure out what I was doing with my life while the Foundation could continue to grow slowly.

I went back to work. I really just stuck my toe in. I took a part-time technology-consulting job where no one really knew of my story or of Isabella. It was refreshing to be around people that didn’t hold me with white gloves, worried at any moment that I would crack. I could go to this job and do something completely outside of her and it was just what I needed. I realized that I was good at something again that didn’t involve taking care of a child, telling a sob story or asking for a donation. It was just a normal job, and I loved it.

Then something happened. We had a meeting set up to talk with Levine’s Children’s Hospital about funding research here in Charlotte. Just a casual conversation about where the funds we just gave them should be placed and what future needs they may have. We sat at a conference room table with other Foundations, heads of the giving department and one of the pediatric oncologists that I knew from Isabella’s time during treatment. As our discussions began, I noticed something about myself. I was falling back into my old-self. I was energized, passionate, knowledgeable and commanding. I couldn’t get enough of the information and it began to feel like the only people talking in the room were the oncologist and myself.

The current state of Neuroblastoma, the clinical trials, the funding, the hosptials… I couldn’t get enough of it. I was thirsty for the knowledge and I could feel myself coming alive again. It became something different for me being in these conversations the second time around. Maybe it was because I no longer had a life on the line. It took the emotion out of the cause and made it just a little less personal for me. The piece that it took out was just enough to draw me back into it. I was charged up and at that point I realized. This is my purpose.

People search their entire life for their purpose. Some never find it. But here I was, a couple of year under 40 and I was looking at mine straight in the face. All these years of running from it, only to find out it was what I was put on this earth to do. It’s been two months since that conference room discussion and now it’s all I think about. I want to be involved with every single aspect of the Foundation. I want to spend the rest of my life figuring out how to make this little idea of ours into something that is known worldwide. I want to really see how much money we can raise if I devote all of my time to it. What could we really accomplish if we were funding this cause with every thing we had?

I’m making it my mission to figure that out.

I want to come back and I can’t wait to get started.

-Isabella’s mommy



Why he was stronger

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 6Day 6
Why he was stronger…

I am a good mom. I’m not a great mom. I got frustrated easy and my patience was thin. She would hate me for telling her that she couldn’t go to school and instead had go spend the day at the clinic and get a needle shoved into her chest. I have to tell her that she has to sit for 8 hours and be attached to a line and listen to other kids scream for hours while she gets chemo and tries to watch her American Girl Movie. By the time the transfusion started, we were barely on speaking terms. I got a lot of silent treatment over the years. I had to hold her down to get accessed so I was the bad guy. “I want Daddy”, she would say… as if things would have been different if he were here. She was also pissed at me because I made her wear matching socks that morning. I’m the worst mom ever.

Right about the time when I couldn’t take it any longer, he would show up. Daddy was here and everything was better. Her eyes would light up and a new child would appear. “Daddy!” she would say. “Hi baby! How are things going up here? What movie are we watching? Oh, wait this is my favorite. Can I watch it with you?” It was perfect timing because she and I were officially over each other by this point.  I was done catering to her, I was done carrying her, and I was done making bead necklaces. I needed to get out of there. He was fresh and new and would cater to anything she needed, and she knew that.

He could come in and cuddle her and make everything all right. All those times I had to hear her say, “ I want Daddy… “ was a knife in my heart. If Daddy were here, he would be the one holding you down while they pushed the needle into your chest looking for blood return to start chemo. For some reason, everything would have been better if it were done with him. But Daddy was working and keeping our insurance afloat, so she was stuck with me instead.

Many times it was hard for me to watch, this unconditional love between two people. Stuart can be a hard nut to crack but she cracked him and she was tangled up in his heart. They talk of this love between father and daughter in Hallmark cards and I personally never experienced it in my life. But often times I found myself jealous of the love and admiration they had for each other.

He got to be the one that said yes. Or who cares if she wants to wear different colored socks to school. When I was over the drama of her emotional episodes, he was able to step in and calm her. I was tired of carrying her back and forth to appointments. She was heavy and I knew she could walk. He would pick her up and cradle her against his body. I had lost my sympathy for the situation because I always had to deal with the backlash of her emotions when she felt like she was losing control. He could calmly step in and make decision based on facts and always had her best interested at heart.

It was hard for me at times to be the heavy and know that I was the one that was receiving the hatred from her when the doctors said her counts weren’t high enough to be released from the hospital. But I knew everything would be okay because he would come up and relieve me from the situation right before I started to crack. He would lay with her in that bed that I craved to be released from. He gave her the love and comfort that she needed when I ran out of it. He allowed me to recharge and come back the next day ready to face the situation.

I don’t know how I would of gotten through without him. He was constantly fighting for her, loving her, loving me, loving us. Being the love and support that she needed when I was on empty.

Even in the end, he did all the things I couldn’t do. He chose where to take her to be cremated because I could not know where that building was located in Charlotte. He picked out the beautiful gold box she was placed in, he paid for her final resting place, he spoke with the pastor, he bathed her after she died and carried her out of our house. There are things I was not strong enough to do, but he was. He didn’t think twice about doing them because for him, it was just more ways he showed his love for her.

He hasn’t been the same since she has left us. I don’t think he has ever experienced true love like that in his life. She loved him unconditionally and he has never loved someone as much as he loved her, including me. What they had was unique and every daughter should be so lucky to have a father love her the way that he did. He would of done anything to save her and she was the love of his life.

-Isabella’s mommy




Ib and Stuart in ocean

Why I Can’t Watch…

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 5 quoteDay 5
Why I can’t watch…

When we were going through Isabella’s treatment, my days were spent tripping over other families battling alongside us. I would spend hours on Caringbridge, writing my updates, reading the updates of the kids I knew and following the rabbit holes down from those pages into new kids and their stories. I was drowning in the world of children’s cancer and I couldn’t get out of it. Neuroblastoma stories often times hit waves of death where kids would just drop out of nowhere and two days later, another one would follow. Most of you read my journal so you understand how hard it was to walk away. People would tell me they would have to find a secluded, quiet place to read my entries because they would be torn up over it. It was like a car accident that you couldn’t look away from.

I probably started following close to 40 different children during this time period. Night after night, trolling these pages of stories – trying to find out what new treatment has become available so I could research and get us in line for it. But day after day, all I was reading about was treatments that were painful, experimental, and ineffective. They were all treatments that were hoping to bridge you to the next big thing. A cure is coming and this new drug will keep your child alive until it is developed! What a joke. As of today, there is one remaining child who is alive. And even though I’m ecstatic that their situation has worked out, it is still hard for me to read. This last child was given a drug for kids who were in remission to keep the cancer away. We wanted to get Isabella on this drug but the drug company stopped making it because there weren’t enough kids to make it for. Yep. You heard that right. So they stopped making it. Welcome to the world of Neuroblastoma.

I couldn’t bear taking on new journeys. So I turned my eyes away.

People will ask me, “Did you just see what happened to that little girl Brooke from Texas?” No. No I didn’t. I just couldn’t watch these kids with their stories of diagnosis and hopes for a cure. Treatments would make them sick. They would have good days and bad days. The kids would beat the cancer; and then it would come back, and they would beat it; and then it would come back again. This cycle continues until it finally takes them. I have watched this movie first hand and I didn’t care to watch it again.

I watched the story of Lacey Holsworth and Adrian Payne from Michigan State University. I loved all the attention it was bringing to Neuroblastoma and I know good things came from that story being in the news. But as soon as I saw she was 8 years old and fighting a relapse, I knew how this story was going to end. I try to tell myself that one of these kids is really going to do the unexpected and survive. I want that to happen so badly. But each time a new child’s story is introduced in the spotlight, quickly the light is turned off and the movie plays again.

Leah Still is fighting strong. I love all the uplifting stories that the media develops and how the country has gotten around this amazing little girl. I pray that she is the one. The one whose light doesn’t go out. But you will have to tell me how it ends, because I just can’t watch…

Isabella’s mommy





Why I Loved Him…

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 4 QuoteDay 4
Why I Loved Him…
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, is 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