Tag Archive for: Cancer Mom

On the Seventh Year Since the Death of My Daughter (Queen City Nerve)

Originally Distributed in Queen City Nerve Newsletter and on Queen City Nerve

Dear Charlotte, 

I remember sometime around a decade ago when I first came across Erin Santos’ blog. I’m not sure who shared it with me or how I came across it, but I was immediately enveloped by Erin’s raw writing style, confronting her child’s cancer diagnosis with honesty, fear, love and dark humor. I kept a picture of Erin’s daughter, Isabella, on my computer desktop back then as a reminder to check back in with the blog from time to time. The picture showed a 4-year-old Isabella in her family’s driveway with a pink flower dress on, her head bare save for a headband with a flower on it, if I’m remembering correctly. I remember every time I stared at that picture before going to the blog and I would think or say aloud, “Please don’t be dead.”

Until last Thursday, I had still never brought myself to read the post Erin wrote the day after Isabella lost her battle with cancer. Seven years later, it hits just as hard. I’m just as thankful for writing the post she shared on our website last Friday, on the seventh anniversary of Isabella’s passing, which of course uses Erin’s usual raw honesty to confront her feelings about moving on with her life and surpassing a dark milestone in which her daughter will have been gone for longer than she lived. While I know Erin will never forget Isabella, another thing that will never change as time passes is the life-saving impacts of The Isabella Santos Foundation (https://isabellasantosfoundation.org/ ), which Erin founded and has gone on to raise hundreds of thousands of dollars for pediatric cancer research and recently funded a $1 million leading-edge rare pediatric cancer treatment room at Levine Children’s Hospital called the Isabella Santos Foundation MIBG Suite

I’m not one to use this publication as a solicitation tool, but if you have money to spare, that’s one of the places I would suggest you put it. And the story below should give you a sense of why, because no parent should have to go through what Erin has gone through. 

Ryan Pitkin, 
Queen City Nerve
Charlotte’s Cultural Pulse


June 28 marked the seventh anniversary of the death of Isabella Santos, whose mother, Erin Santos, founded the Isabella Santos Foundation. On that day, Erin shared three posts with us ranging from the day after Isabella passed to June 28, as she looked ahead at how to live in a world in which Isabella has been gone longer than she lived. 

read article on Queen City Nerve>>

7 Years Later…

It all starts with a girl.

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, June 28, has been seven years since our brave Isabella passed away. This year marks a milestone–it marks that she’s been gone longer than she was alive. 

Today we are reposting three blog posts from her mom, Erin, to show the grief cycle of a mother and a family, and that it’s okay to move forward without forgetting. 

Here are Erin’s words. Unedited, raw and real. To honor Isabella, we are starting with the most recent post and ending with the post written the day after she passed away… 

7 years later…

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.  

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. 

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.  

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. 

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

A husband and wife, 3 kids and dog and a cat has
now dropped to a Mom and 2 kids.

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. 

If I didn’t do this right, I could tailspin into something that could put me under water for days. 

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.

This woman… there is no one like her. Love.

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 dresses (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.

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.”

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.

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.

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.

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.

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 sat in her rocker that I used so many times to rock her to sleep. I just rocked.

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.

When hospice arrived that morning, they confirmed that we had hours.

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.

And just think, it all started with a girl.

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 with pediatric cancer. ‘Cancer Messed With’ was born and has given those affected by a cancer a way to rally behind their loved ones. 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 in the United States.  We cannot do this without your support. DONATEISF.ORG

A Cancer Mom’s Strength Comes Full Circle

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

Sarah Fruendt Sadler has many titles.  She is a pediatric oncology nurse at Levine Children’s Hospital, a wife and just recently added the title, Mom, to her name.  You would never know that she also holds the title for two-time childhood cancer survivor.  Diagnosed with Leukemia at two years old and relapsed when she was eight, Sarah vividly remembers the pain, the treatments, and most importantly, the strength of her Mom.

This is a little different kind of Cancer Mom story… 

By Sarah Fruendt Sadler

When people learn that I am a pediatric oncology nurse, they always cringe and ask why I would choose to work in this speciality. What they don’t know is that I am a two-time childhood cancer survivor myself. When I was two years old, I was diagnosed with Leukemia and spent the next two years in and out of the hospital completing treatments. 

Then at age eight, approximately five years in remission and three years off of treatment, the unthinkable happened – after a routine check, we received the phone call from my oncologist that the cancer had returned. If you ask me what I remember about that night, I’ll tell you that I remember my parents acting very serious and my mom crying as my dad sat us all down on the couch and told us the news. I couldn’t truly comprehend what this meant as I was so young the first time and I simply told them, “Well, I beat this thing once, I will do it again.”

My mother, however, had a strong memory of the cancer life before and was devastated it was going start all over again. She kept journal entries written to us kids and from that night, the entry dated June 4th, 2001 at 2:30am she wrote: 

“Our lives will never be the same, at least not for a while after our phone call from the doctor tonight. You were so young last time, you don’t remember how chemotherapy made you feel. Oh how I wish this was happening to me or daddy, not you. You’ve gone through so much already and you were just getting used to a normal life. And now we have to go through it all again and more intensive this time. You don’t understand how your beautiful looks will change, how weak & sick you will feel, and especially how you will no longer be able to be around your friends. Goodbye normal life.” 

As a mother now, I can’t imagine having to think these thoughts about my own son, knowing the truth of the difficult days that lie ahead. Although we had a huge network of support from our friends & church, no one can take the place of a mother as she spends each day taking her child back and forth to the hospital, keeping up with all of the medications, and trying to hold on to the smallest bit of hope that normal life will return someday. Not only does she have to use her strength and energy to continuously fight for her child with cancer, but daily puts on a brave face and works tirelessly to care for her other children and family as a whole along the way. It’s a tough journey for each and every child facing a cancer diagnosis, but it is too often forgotten how much a parent must sacrifice, especially a mother, as they watch their child suffer and feel helpless to control it. 

During my treatment, there was one particular point in time that I had become very sick and the idea of a full recovery seemed very distant. It still is extremely difficult to go back and read her journal entry to me that day as it said:

“We know that if you were to ultimately die from the Leukemia, that you would go to be with the Lord in Heaven. Oh how I would miss you terribly and it would be so hard – but I know you would be in a better place, the best place, and that I would see you again in Heaven some day.”

Can you imagine thinking those thoughts for your own child, knowing there is nothing you can do to help and you are forced to accept whatever happens? I truly hope that no mother ever does. But childhood cancer surrounds each and every one of us in some way and so much support is needed to help those facing these realities. 

I am 16 years cancer free, as a normal, healthy young adult with a wonderful family and such a rewarding career because of the support of groups advocating for children with cancer like the Isabella Santos Foundation. 

Raising funds for new, upcoming cancer treatments and research for those yet to be discovered means that more success stories like my own are possible for children in the future. Despite having battled cancer twice as a child, I have been able to live my dreams to the fullest. I was given the chance at a normal life – going to school, attending college, studying nursing, marrying the best husband a woman could ever hope for, and even starting a family of my own with our beautiful son. Now I spend my time giving back in the best way I know how, caring for patients and their families at the same hospital where I experienced it all firsthand many years ago. 

Although I have been gifted this amazing opportunity of a normal life, I still rely on the love and support of my mom as it shaped me to be the person I am today.  I know it fills my mother’s heart with joy to see how I have become a mother myself and she’ll never fully know how much her strength and courage has significantly impacted my life. We must all join the fight for not only the children with cancer but their families. We must do what we can to give them hope that their own child will get through this and have a normal life someday – it’s all we can sincerely hope for.

Donate and help us fund upcoming cancer treatments and research so that more kids have success stories like Sarah’s… that they are able to become Mother’s themselves one day.  We are working to help them BEAT cancer, GROW hair and LIVE their dreams.  Your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.


Defining Support, The Cancer Mom Series: Laura

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

By Laura Fedak

Laura is Mom to Madison, who was diagnosed with osteosarcoma a little over a year ago. Madison is currently cancer free and learning to walk strong again!

It was thirteen months to the day that I heard the words that would completely change what “normal” meant to our family.  On May 5th, 2018, I remember sitting in the conference room on the 11th floor of LCH and looking in the eyes of a stranger as he told me my sweet Madison had osteosarcoma.  It wasn’t “sugar-coated”; it was cancer and that was it.  The team told us of the treatment plan and timelines.  We got a rundown of all the medicines along with what to expect before, during, and after chemo.  We heard 15-letter names of medicines I could not pronounce (but in time they became part of my everyday vocabulary).  They told us a lot, but what they did not tell us, what they could not tell us, was how to feel.  They could not tell me that the moments before her first chemo treatment I was going question if what I was allowing to be put into Madison’s body was okay.  They couldn’t tell me that after the tenth time of being woken up in the same night by the words, “Mommy, I need to go potty,” I would roll over on the pull-out sofa and beg for this all to be over.  They couldn’t tell me that I was going to question every single scan, every dose of radiation, and every procedure Madison would be put through.  They could not tell me that I was going to consider breaking her out of the hospital on many occasions just to take her to McDonalds for some french-fries that she wasn’t going to eat.   These amazing doctors that I still trust with Madison’s life could not tell me how to handle the seemingly impossible moments, but what they did tell me was that whatever I was feeling was normal.  And that was the beginning of me learning that my support would come in some pretty amazing ways.   

Some people supported us from a distance:  a card in the mail, a call when I least expected it, or a text that included a Bible verse I didn’t know I needed to hear.  Other people needed to be close to show their support.  A lot came to the hospital and brought toys for Madison, I think mainly because they need to see that she was okay.  And there were those that couldn’t bear to see Madison hooked up to machines, and they came by once we were home.  No matter how they supported us, the fact of the matter is that they did it because they knew we needed it.  

For me, support came when I least expected it.  Like when my mom drove two hours just to let me go out for a run because she knew I needed a break.  Or when my best friend called and I told her repeatedly, “I’m fine, I don’t need anything,” yet she shows up two hours later anyway with games for Madison and chocolate for me.  Support came when my entire school rallied behind Madison and created a Relay for Life team in her honor.  It happened when our entire community wore “Team Madison” pink the day she “rang the bell”.   

But truth be told, the best support I received came when people took the time to take care of Madison.  There were so many days where I felt I could not do anything right; when Madison would stop speaking to me because we had just spent so much time together, or when she was mad at me because I would not “break her out” and take her home.  And that is when I found some pretty special people who I feel blessed to call our “hospital family”.  To the nurses who don’t get paid enough to deal with the fits Madison gave them, yet took the time to play Barbie’s or with playdough – Thank you!  To her doctors and surgeons who were far too busy to sit and chat with Madison, but did because she asked – Thank you!  To our child-life specialists who somehow got Madison to get out of bed and walk – Thank you!  To the people in the cafeteria who spoke to Madison and told her how beautiful her smile was – Thank you!  To every single person in Seacrest Studios who made sure that Madison was not seen as a patient but rather as a rock star – Thank you!  To the entire ISF team who would rearrange their schedules just because you knew Madison needed some play time – Thank you!

The importance of being supported is just knowing that there are people who are willing to help.  

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.


Defining Support, The Cancer Mom Series: Ashley

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support.

By Ashley Davis

Ashley is Mom to Ava, who was diagnosed with high risk acute lymphoblastic leukemia at 18 months old in 2017.  She is currently being treated at Levine Children’s and her end of treatment date is in December, 2019.

Support means everything to a family going through a cancer diagnosis. Whether it’s a lot or just enough. Because being/ feeling alone during this hike is extremely difficult and painful. 

Support can come in many different forms and ways. Sending a text, giving your paid leave to the father who’s working 40+ hrs a week to make ends meet because his wife just had to quit her job to take care of their sick child, sending a meal, calling us to check on us (because you will never bother a family going through this, unless they tell you otherwise) there’s never too much love and support you can give a family going through cancer. It may seem small to you but it’s huge to them. Because they’ve had family they’ve talked to weekly before their child was diagnosed to not talking to them at all now, Some feel like they’re in the way and others are judging you for your decisions or the way your feeling, the person they could always count on to talk to is either too busy to or too scared to talk to you, all because in one second your life changed. 

Ava’s Leukemia took one second for everything to turn upside down. Support the sibling who feels like she’s in the way or feels she can’t talk to her parents because she doesn’t understand what’s going on now. She was preparing for her first week of kindergarten one week and then everything changed. Her mom tries not to get upset in front of her, but she knows the crack in her voice before she starts to cry. 

Support the sibling who is coping just like her parents are, we can get through this! Only 2 more rounds of high dose methotrexate, pray that she doesn’t get mucositis so that we can go home to spend time with Zoey this weekend, because of the flu ban she can’t come to see us at the hospital. I’ve felt like I’ve walked through fires, this is the hardest thing I’ve ever done. 

Support – a hug, a gesture, love is powerful to a family who’s life is now unknown. Day by day, second by second sometimes is how we have to live. Because if we let our minds get too far into the future it worries us. Will my child still be here?  Because there’s a fine balance between the cancer killing her and the chemo also wreaking havoc on her tiny body.  Will my healthy child resent me for what I’ve had to do to make it through this, will my marriage make it?  You begin to question everything, your faith, your decisions, everything. Could this be why? Why God? Why did we do that? Why aren’t they here for us when they know we need them? There isn’t one part of your life that is touched by the hell you have to endure. Support goes hand in hand with success, success for everyone. We all need support, be there for each other. Support cultivates love, friendship, faith, strength, and hope. 

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.