It all starts with a girl. A girl who loved dresses more than pants. Who loved butterflies, her friends and her family. She was a warrior with a magnetic energy that everyone around her felt. Even when her body was pumped full of chemicals, she always had a smile. She may have lost her fight with cancer, but cancer never beat her.
Today, it has been seven years since our brave Isabella passed away. This year marks a dark milestone in which she will have been gone longer than she was alive.
The following is made up of three blog posts from her mom, Erin, founder of the Isabella Santos Foundation, that follow her through the grief cycle that she’s experienced during that time. Through these posts, Erin hopes to remind other families that it’s okay to move forward without forgetting.
Here are Erin’s words just as she spilled them onto her computer, a stream of consciousness that we have not edited in any way. They are raw and real. To honor Isabella, we are starting with the most recent post and ending with a post written the day after she passed away…
7 years later…
June 27, 2019
I knew the day would come. The day when she would be gone longer than she was alive. While I know as her Mother that she lived 7 years and 112 days – it’s not really something I can say in casual conversation without sounding like a lunatic. How old was she when she passed away? 7. How many years has she been gone? 7. And now I’m looking at those numbers right in the face.
It honestly doesn’t feel like it has been 7 years because it’s still easy for me to hear her voice and the pictures seem like just yesterday. I can lay in my bed and still picture her walking down the hallway to my room. But now 7 years later… I made a new transition that takes away those visions. I decided that it was time for a change. So just two weeks ago, Grant, Sophia and I said goodbye to the home we all knew as the home they grew up in. I had cleaned out her room earlier in the year and over time, I have saved all that I felt I needed to. This move was the last chapter in moving on.
We didn’t just move up the street. We moved just outside of uptown Charlotte. Almost 40 minutes north of our old home. We moved to a house half the size of our old one. It’s a 1920’s bungalow with a little yard and a front porch swing that Sophia and I swing on as she reads her books. My neighbors didn’t know her and the new schools my kids will go to probably haven’t heard of her either. We can walk to everything and just about everything in our life is different. It’s what I wanted for us and honestly what I needed. We sold just about everything except our clothing and dishes and just started a new life. It was time.
The house is in shambles and we are living out of boxes. I’m the happiest I have ever been… and it took 7 years. And honestly it took me 7 years to say that out loud without feeling bad about it. That is a long ass time to recover… but I’m getting there.
I was telling someone the other day about our new life, our move and my cup that runneth over with happiness. I felt the shame and guilt build to the surface as I had to say out loud, “However, it’s taken me 7 years to get here.” She said something that just really stuck with me. Here’s how the story goes: Every SEVEN years, we become essentially new people, because in that time, every cell in your body has been replaced by a new cell. Is has been scientifically proven that our bodies AND minds change every 7 years.
So I googled it and found this:
Between the ages of 42 (my current age) and 49:
This is the stage when major changes in our lives take place. We self-introspect and take major turns be it in our career or relationships. If we haven’t made any mark in life already, we try to achieve it at this age. Emotional love is more of an unconditional love now. This is the age we start discarding stereotypes and believing in ourselves.
Someone once told me when Isabella was first diagnosed that the only thing the internet is good for is porn. I’m sure it was to guide me away from searching out all the things that would take me down a dark rabbit hole of sadness. But I have to say, that my recent Google search uplifted me in a way. It made me feel like I shouldn’t apologize for being happy or starting over.
She is not forgotten by anyone under my roof. And honestly, once the house has a fresh coat of paint up on the walls and we unpack a couple of boxes, we have made it our mission to figure out ways of bringing Isabella into our new home. Sophia and I want to plant a butterfly garden because she would of loved it. I want to put up new pictures of her in our home and be prepared for all the new neighbors and friends in my our life to ask about her and we will be anxious to tell them who she was and why in just 7 years of life she changed so many. We will not feel guilt about our happiness because she would want this life for us. We can never fully recover from the journey she took us on, the last breath she took in front of me or the lessons she taught us. We are thankful that we were a part of the ride she allowed us to be witness to in the 7 years we had with her and promise to take her with us for the next 7 years to come and beyond.
We are going to be okay.
I’m ready to be somebody other than just her mom…
January 31, 2019
We are moving. Hoping to have the house on the market April 1st and in a new home between SouthPark and Uptown the day after the kids finish school. I’m so excited I can barely stand it. This house that was once purchased 8 years ago was for a family I no longer recognize. A husband and wife, 3 kids and dog and a cat has now dropped to a Mom and 2 kids. The house is huge (which I know is inappropriate to say) but we needed it when Isabella was fighting cancer. My Mom was living with us on and off and with a revolving door of help – we used every inch of the home. The kids played in the yard because we needed to keep Isabella close and Bailey and Jake roamed free alongside them. The Marvin school system was our backbone for support with an amazing free education and my neighbors became my extended family.
But 6 years after she has passed, a divorce, a dog that passed away and a cat that one day left and never came back – this house is a graveyard of my past life. I have no idea how to fix things in the house (although I’m learning) and an acre of yard that the kids no longer play in has me dumbfounded on seeding, aerating, lime and who knows what else. Other than Sophia’s best friend next door – we keep to ourselves and find our inner circle is completely new. In fact, the majority of people close to me have never met Isabella and sometimes one step removed friends don’t even know I have a child that passed until I throw it out on the table. I need a change badly.
I have been going about this change fairly mechanical. Any free time I get is spent devoting my time to a room, a closet, a drawer. There are very few items in my house that mean much to me at this point. My goal is minimal living, kill all these toys the kids don’t play with and trinkets that junk up my life. I’m plowing through each area with very little emotion. We had done a few passes on Isabella so luckily I’m not tripping over her in every drawer, which helps. I’m throwing everything away. Tubs that have crap in them that I haven’t even looked in – the entire tub goes in the trash. If we haven’t used this in the last 60 days – it’s gone. Goodwill is making out like a bandit and my trash screams of a purge.
Grant has been okay with the process. He’s a lot like me with very little attachment to stuff these days. Other than his Beats headphones, his phone and some items he likes to sleep with – the rest of it can go. He is stuck in a little boy’s room and the promise of a new room is enticing to him.
Sophia would keep a speck of dust. She struggles a lot with Isabella still and Mommy and Daddy not being together so her “stuff” is on lockdown. The only way I can convince her to purge is her little cousin Eden who is 3. “Wouldn’t Eden love these books you read in preschool?” Sophia’s heart is bigger than anyone I know – so of course, the thought of giving to her little cousin throws the book right in the box. God, I love her.
The house is about halfway done now with the purge. I’m enlisting the help of my Mom to come for Sophia and Grant’s room because I need a little reinforcement. But there was one last room that deserved some attention and I have been holding off for 6 ½ years for it. The time had come. My hand was being forced.
My first step was explaining to the kids what I needed to do. I had to assure them her stuff was not being thrown away. In fact, it’s just being boxed up and moved with us so we can still have her in our new house. I was just merely “cleaning and organizing” her room so we can find a better place for it when we move. They seemed okay with this idea. However, I knew that I couldn’t have them there for it because they would freak out if they watched. Thankfully, two families graciously took my kids for the day and night so I could focus on the task at hand.
Now, how do I focus on the task at hand? I knew myself and I knew that I had to be very strategic in how I went about this. If I didn’t do this right, I could tailspin into something that could put me under water for days. Do I bring my Mom down, or will that be too hard? Should I bring in some friends who don’t have a connection to anything? I honestly almost went this route. But, I figured that I would be too quick with the process because I didn’t want to explain every item I picked up. Otherwise, that would be another tailspin. Then it finally hit me. Miss Chrissy. If Isabella wasn’t with me or my mom, she was with Miss Chrissy.
I knew Miss Chrissy would be perfect because sometimes she comes over and just to kick herself in the heart she goes up there. She fingers through her dress (that she mostly purchased) and revels in the tailspin for a brief time. This is usually done at Halloween when she comes over and we drink waaaaay too much on the front porch, passing out candy and listening to 90’s hip hop and some 80’s favorites. It never fails, the alcohol content rises and we find ourselves stumbling up the stairs. She and I like to torture ourselves together.
Of course, she accepted the invitation because it may be the last true torture. This woman… there is no one like her. Love.
She arrived and I tried to be organized. Boxes, plastic bins, loud music… I was ready. We walk in the room and we stand there quietly. Then I start to cry. Well, that was fast. We start to attack it piece by piece and the conversation stays light. She gets the update on my crazy life and I get to ask her about hers. We stop every couple of seconds as we hold something up and we just pause. A large sigh comes over the both of us.
We have a system. Trash, goodwill, Eden and keep. The system works well because the trash really is just stuff others have brought into her room to play with. Sure, there are random beads and broken Barbie arm but otherwise, it filled up easily. Some things were hard. It pained me to get rid of anything that her handwriting was on, which was honestly stupid. I remember saying, if Isabella were here – she would say, “Mom… why are you keeping that? It was a homework assignment.” But, I figure in a couple of years I will hit those papers again. For today – I wasn’t ready.
Goodwill. Stuff that I have no idea why she had, who gave it to her and no memory of her wearing. I have a memory that is a steel trap, so if I don’t remember then this is why Miss Chrissy was perfect because she would remember. “Do you even know what this is?”. NOPE! Then off to Goodwill it would go.
Eden. This was easy too because if you know Isabella, you knew she was picky about her clothes. Anything that was pants – definitely for Eden. I’m not sure if I can remember her wearing pants 10 times. She hated them because of how they fell on her bone marrow scars on the front and the back. And if she did wear them, it was because I forced her and a day of Mommy hate was to come, and I hated those days. Needless to say, Eden has enough pants to last her awhile.
Keep. This is where things got weird and I thank god we weren’t being watched. The mounds and mounds of dresses that Chrissy bought her that were over the top. These dresses were ridiculous and are why Janie and Jack are still in business today. Huge dresses with sweater cover-up and matching headbands. The outfits that were purchased specifically for holidays that you could only wear maybe twice. My favorite, the orange tulle ballerina skirt with the cream shirt that had pumpkins on the collar and the matching cream button-up sweater with pumpkins on it. One outfit sends you spinning into a memory. She wore this Janie and Jack pumpkin outfit (estimated value $150, ridiculous) one October and got a massive nosebleed due to low platelets. We were in her bathroom and it was pouring out of her, all over this outfit. We couldn’t stop it. We called Miss Chrissy to come and stay with our kids and rushed her into the car – driving 30 minutes to Levine. We stopped at a light and flagged down a police officer to escort us up, allowing us to run lights. She was bleeding everywhere. The outfit was ruined and it was all that mattered to her. Not the fact that she was bleeding out in the back of Stuart’s truck.
In Miss Chrissy fashion, the outfit was fully replaced – with a matching outfit for Sophia. They both wore these outfits together proudly almost into December. That is what you call a keep outfit.
I could go on for hours on the clothing but I will spare you the details. Although, just to add a funny story to the mix. Let’s talk about Isabella’s underwear. Bear with me. If this girl wasn’t in a full-length gown, she was just in her underwear. A constant mix of fevers made her body temperature a little above normal. So most times you were with her, she was walking around in a pair of princess underwear. We open the drawer and this one shocks us. Every little pair in the drawer I could see her in. But now we feel weird because we are saving a little girl’s underwear. I’m actually laughing as I type this because we felt like creepy women. But it was actually an outfit. We couldn’t figure out what to do. “I feel weird taking a pair!”, Chrissy said with a laugh. But I got what she meant. We saved a few in her clothing box and decided not to judge ourselves. I swore if it had a memory, it needed to be kept. So there. I kept some undies. Ugh.
The rest of the day proceeded and we found lots of really amazing things. We found so many pictures she kept of her and Soliel (her best friend) and even notes she had written her that were still sealed. We hated to open them but when we did we found they just said things like asking her to come over. They were simply just notes a 7-year-old writes her BFF. We kept them all. We found pictures she had drawn of her and Grant that we knew he would love. We found a box of letters her class had written explaining how each of her classmates were going to live their life differently now that they met her. All saved.
In the end… we finished. Miss Chrissy took some items, pictures of them together etc. And then there she was… all in boxes.
I don’t remember what all I said to Chrissy when she left but I know it wasn’t what I really needed to say. She needed an hour-long thank you for what she did for her, for me all while killing herself I’m sure in the process. The definition of selfless. I hate that she doesn’t have her anymore and I know she aches as much as I do. I hate that. But all I can give her now are these torture moments – that’s all I have left.
I took her sheets off the bed to wash them and then I just sat in the empty room. I sat in her rocker that I used so many times to rock her to sleep. I just rocked. Then I sobbed like I never have – for a long time. Sobbed like it just happened all over again, which I rarely do anymore. I couldn’t stop. I think I just let it happen because the house was empty and there was no one there to console me or hear me. I was truly just crying about losing my daughter and how completely awful the whole thing is. I can’t tell you what was all going through my head. I can only describe it as the worst pain I have felt in years.
I could barely move the rest of the day. I ordered food and seriously ate a bowl of pasta in my bed. Forrest Gump was on TV and just stared at the screen. I was in a full coma of heartache. So many people reached out to me that day and I’m so thankful for that. I’m not sure anyone could understand what that was like, but it really felt like my last goodbye to her, which is silly. We talk about her every day in our home, at work and casually in life – but for some reason, it felt different. Closure that I had never had – but I needed.
And now we just have to move on. I’m ready to be somebody other than just her mom. I’m honestly ready and excited.
She left us before 10…
June 28, 2012
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 in 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.
Although she only lived seven years, Isabella will never be forgotten. Because of her fight, the Isabella Santos Foundation was formed and has been able to help children and their families in their fight against pediatric cancer. Isabella may have lost her battle, but we continue to fight today.
And just think, it all started with a girl.
Please consider DONATING to ISF in honor of Isabella and all the children with rare pediatric cancers. Our recent 5 million dollar commitment to Levine Children’s Hospital will create the Isabella Santos Foundation Rare and Solid Tumor Program here in Charlotte, one of the first of its kind. We cannot do this without your support.
You can read more blog posts from Erin here.