Tag Archive for: charlotte pediatric cancer foundation

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

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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

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Why I Hide Her

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

Day 3 Why SeriesWhy I hide her…

I’m proud to say I’m Isabella’s Mommy. I love meeting people who know about the Foundation or have heard of her without having to launch into the full story. We have accomplished so much over the last couple of years and I should be shouting it from the rooftops. But sometimes I don’t…

How many kids do you have? This is my least favorite question in the world. Imagine having to assess each person that asks you this to determine if you should be honest or lie. Is this just casual small talk or are they really trying to get to know me? If I lie and then they find out, that is even a more awkward situation. If I tell them the truth then I instantly get the pity look. (I dread this look.) Even those times when I lie because we are having basic chit chat, I usually end up going back later in the conversation and saying, “Actually, I had a daughter who died too but I didn’t want to bring that up but now I feel like crap about not bringing it up.” Insert even bigger pity look. And I also look like an idiot.

Nights on the town with girls are always the worst times to have her with me. The night is usually prefaced by the friendly suggestion of not telling strangers who ask what I do, what I really do. I’m asked to elaborate more on the technology consulting I do on the side or maybe just say I’m a blogger. I get it now because in the early days, I would mention that I work for the Foundation and sure enough someone would pull up a stool and talk to me all night about their Father who is currently being treated for prostate cancer. I get the look of, “I told you so” from my friends and sure enough I’m stuck in a conversation all night with a stranger about PET scans and blood work and side effects from chemo. This usually doesn’t make for the best of nights for any of us.

I also never know what kind of emotional state I’m in. The minute I mention Isabella, the follow up question is, “Oh my gosh… how did she die?” Which then leads me down a story that I really don’t want to tell while I’m checking out at Harris Teeter. I find myself answering, “She died from cancer. But it’s okay, we started a cancer foundation in her name and we raise a lot of money for research.” Did I just say, “IT’S OKAY”? Why do I do that? It’s not okay but I can’t stop my mouth from saying it each and every time. Listen lady, can I just pay for my milk?

My favorite ones are when Sophia brings her out of the box and unloads on an unsuspecting stranger who is serving us at a restaurant. All this lady wants to know is what we want to drink and Sophia kicks it off with, “My sister died”. Shoot. Me. Now. We usually have to follow up with that look that says, ignore her – she’s crazy… and I’ll have a tall glass of wine.

As much as I know that it’s okay to hide her, I feel bad every time I do it. Some days I want to not have her shadow behind me. I just want to be a normal person that doesn’t have this huge secret tragedy. Her story changes people’s perspective of me and makes me feel like I can’t be the witty, sailor mouthed, and unprofessional person that I really am. Instead, I have to be Isabella’s Mommy… and that can be a hard torch to carry.

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Why I Stopped

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation
Day 2 QuoteDay 2…Why I stopped
When we finally placed her ashes up at Calvary, I found myself there every Wednesday. I would drop off Sophia and take 30 minutes to sit out there with her. The visit was filled with mostly crying and lots of anger. It became something that I scheduled things around because I wasn’t used to being away from her for these long periods of time. I still needed to be with her.

As time passed and the weather changed, I found myself missing a Wednesday or two. Guilt would plague me all day until I would find myself pulling up to her spot, even if it was inconvenient, because nothing in my life should have been more important than her. I became a cemetery grounds keeper as I took it upon myself to keep everyone’s site around her on the up and up. Watering flowers, adjusting sentimental pieces that had fallen in the rain and even chatting briefly to the people that surrounded her. I remember thinking how sad it was that I never saw anyone visiting them at the cemetery. All these people out here and I was the only caretaker. Here I was, a 35-year-old cemetery grounds keeper. Felt like an odd way to deal with a death.

Time began to pass and the summer came. I was no longer dropping Sophia at Calvary so I let myself take a break from her. I would stop out occasionally but when I did, the visit turned into something else. My visits became more about self-reflection, guilt, anger and resentment. I was no longer enjoying the visits. I would sit with my back to her and I would rest my head back on her nameplate. My mind would spin of all the things I had done since I last visited her that she would not be proud of.
Why do I live my life this way? I’m a better person than this. Do I drink too much? Am I giving enough attention to Grant and Sophia? Am I good friend? Should I be calling my Mom more?

My regular visits didn’t hold these questions when I was there with her because I was there so often. Not much had happened since I was there last so it wasn’t about catching her up with my life. It was just about being together again.
But time between visits brought up a range of emotions for me.
When you have a belief that when people die they are still, in a way, around you – for some it can be comforting. But for me, it was scaring the shit out of me. Is she watching me lay in bed all day? Is she watching me yell at the kids? Is she seeing Stuart and I fighting and saying horrible things to each other? It really messes with your head to think that your 7-year-old daughter could potentially be watching you make all these mistakes in your life. I found myself sitting with her and apologizing for all the things I had done wrong since last time I saw her.

I would leave feeling like crap about myself so I had to stop visiting her.

It has even changed my thoughts on what happens after we die. I’m now choosing to not believe that our loved ones are still with us, guiding and steering us in our lives. They are just gone. She is not watching my every move and constantly being disappointed in the choices I’m making. I have to think this or I can’t live my life. I can’t apologize to her every day. I can’t sit out with her and explain myself.
I also know that I have to let go of her and by not going out there – it allows me to do that. I need to be present in my life and know that I’m doing the best I can. I can’t continue to tend to her or think that she needs me to come out there because it means something to her. She is gone. She is not keeping score and I need to remind myself of that every day.

A fear of mine is my children saying that I never got over her death. If I go out there and sit, it just reminds me of all the horrible things about her life and I can’t move on. I’m swept up in the lives of the dead people around her as I tend to them as well. It’s a sick way to spend your day when you have so much in your life that is good.
I still go occasionally. But it’s brief and sometimes cold. It has moved toward bringing her new flowers or some silly lawn ornament that I stick in the ground. I still put my hand on her name when I’m there so that she knows it’s me – but as soon as I feel the punch in the gut, I remove it quickly. It’s like a bolt of lightning that runs straight to my heart. I feel like my relationship with her is dwindling away, but maybe that is the right thing to do. I need to take a step back from the pain of her and the guilt that it brings to my life.
But it also makes me feels like I’m losing her all over again.

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Why I Ask

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

ISF Backdrop Quote Sept

Why I ask.

A couple of weeks ago, I was enjoying a casual dinner with friends. We were eating our weight in chips and salsa and conversation turned to ISF, as it usually does. We started a conversation about a new concept I was trying out on Facebook to help raise money. It’s a simple idea based off our #isftagteam concept.  Each day I ask 5 people to support children’s cancer research by tagging them on Facebook.  It’s just a simple tag, asking you to take a minute and give to the cause of children who DIE from cancer. I don’t make you pour buckets of ice on yourself, you don’t have to do some silly dance or even do a single push-up – and you don’t have to tag others to do the same. You just have to support children’s cancer research.  Make a donation of $5 or make a donation of $500.  I don’t care what you donate – just support it.

I got pushback from my dinner companions for this concept immediately.  “People don’t want to be called out publicly”, “You can get away with doing something like that, but I would never do it.” I kept explaining that I didn’t really think it was offensive.   If someone directly asked me to give to something they really believed in, I would give. But, the looks on their faces told me that it was too “in your face”. Even though the conversation changed topics, I kept bringing it back to the simple question of whether or not I’m offending people by asking them publicly to support something that means everything to me. I couldn’t swing their opinion.

So I stopped doing it.  My goal wasn’t to upset anyone or push them to give when they didn’t want to. That was 2 weeks ago.

I hated that I stopped.

The more I thought about it, the more I realized something. I don’t give a F*ck if it makes people uncomfortable.

There, I said it.

Do you know why it killed her?  Because people are too nervous to ask someone to donate.

Not anymore.  So I’m sticking to my guns here.  Guess what, if I ask you – you don’t have to give and it won’t make me hate you.  But if you do give, it will make me love you.  It will make me love you because you get it.  You understand that nothing will be done unless something is done.  Someone once told me, “You know… I would give to ISF more if someone just asked me to do it.  But lots of times no one asks, so I forget and I don’t donate.”  I about choked when I heard that from someone recently.

So I’m making it my mission to just ask.  No harm in asking.  Things can only change if people take action and MAKE them change.  My goal isn’t to put you on the spot.  But sometimes you do things when you are on the spot.  And I’m hoping that what you do when you are on the spot will bring change and save lives.

Let’s do this.  Prepare to be tagged.

#ISFtagteam

Erin Santos, President of the Isabella Santos Foundation and Isabella’s Mommy

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