She Left Us Before 10

It was 9:50 am on June 28th when Isabella took her last breath.  The day had barely begun.

But her journey had been a long one for a 7-year-old.  Five years of diagnoses and treatments and relapses and surgeries…and all of the other things you can’t prepare for.  She fought hard. Her parents fought hard. We all did. And we still do today, because she – and kids like her – deserve that much.

Isabella will never toast to a 10-year wedding anniversary.
She won’t attend a 10-year high school reunion.
She’ll never celebrate being 10 years cancer-free.
She didn’t get to celebrate her 10th birthday.
Isabella never even got to see 10 am on June 28th, 2012.

On this day, we honor the child who left us before 10…whose legacy helps us continue the fight. Below is the blog entry Isabella’s mom wrote the day of her passing.  We share it every year as it is real. It is raw. And it is a reminder of WHY we continue to fight.  Make a donation in Isabella’s honor

She Left Us Before 10

[June 28th, 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.

-Erin Santos, Isabella’s Mom, June 28, 2012

Another year without Isabella is another opportunity to fight even harder. It started with a girl.  And she is changing the world.  Please help us keep Isabella’s legacy alive.  

 

ISF MIBG Ambassador: Cynthia & Kat Wood

GOAL: Run 50K in 1 year to raise $5K for ISF. Say what??
 
This will be Cynthia’s 4th year fundraising for ISF and she has enlisted a special partner in crime. Cynthia decided to sign up as a MIBG Ambassador and think outside the box for her fundraising. Cynthia and her daughter, Kat, are committing to rack up 50K in runs to raise $5,000 within a year of this coming Thursday (June 28th)… the anniversary of Isabella’s passing.
 
Fundraising year after year gets hard, no matter who you are! Not only do we love that Cynthia’s daughter is getting involved (kids helping kids make our hearts melt), but that they are doing something different and new. Thank you Cynthia and Kat for your dedication in honor of Isabella. We can’t express how grateful we are!
 
Learn more about what it means to become an MIBG Ambassador.  Funds raised through this program will be distributed very specifically through our partnership with Levine Children’s Hospital with a very targeted purpose. So get creative and fundraise the way you want to.

Cancer Stole My Sister

Isabella was diagnosed with Neuroblastoma just 6 days after my 1st birthday so I never really knew her without cancer.  My Mom and Dad tell me stories all the time about my life with her.  We did everything together and I brought so much comfort to her when no one else could.  I would come and visit her in the hospital and crawl right up in bed with her as we would watch movies and laugh while we ate dinner together in her bed.  I would walk around the hospital with her as Mom wheeled her IV pole up and down the hallways.  She would show me around and introduce me to everyone.   She was so proud of me.  We took so many trips together.  We loved going to Disney World and running from ride to ride as we got to meet every Disney Character you could imagine.  We had special days at with the Panthers and got to meet people like Steve Smith, Tony Stewart and more.  Our whole family moved to New York City for a couple of months with Isabella got cancer in her brain.  We stayed in an apartment that overlooked the city.  I would play trains all day long while I waited on Isabella to finish treatment, then she would come home and Mom would take us to the park and play for hours.  People would always look at Isabella in a weird way because she had a big scar on her bald head but I never even noticed it on her.  To me she was always beautiful.  For the years during Isabella’s treatment, I became her best friend.  She would always ask me to hold her hand when she would get her line put in her chest.  It was hard for me to watch, but I knew that she needed me and I would help her be strong.  Near the end of her life, she didn’t want to be around very many people.  But, I was always allowed to be around her.   She would let me crawl in bed with her and watch movies and rub her back.  She would ask about my day and I would tell her all the things I did and she would tell me about her day at home or in the hospital.  We would wrestle with Daddy and laugh and sing at night together before we crawled in bed each night.

These are all stories that my Mom and Dad tell me.  But I don’t really remember them.  I’m thankful for pictures and videos that tell me this story too, and I hope one day these memories become more real to me.  I remember her red hair, and how she said my name “Graaaant” when she would call for me.  I remember she like Taylor Swift and Ariel and American Girl dolls.  I remember the day she died.  I was at a summer camp and my Grandma came to pick me up.  I remember coming into Mom and Dad’s room and she was asleep in their bed and I told her goodbye and that I loved her.  I remember going to Calvary for her funeral and that my cousins were there and Miss Chrissy read a poem.  But I don’t remember much more than that.

It’s crazy to think that we were best friends, but I can’t remember it.  But that is what pediatric cancer does.  It steals people from you.  It steals sons and daughters, it steals brothers and sisters, it steals best friends.  It also steals the possibility of creating memories.  Cancer stole my sister, my best friend and a lifetime of memories that we were supposed to make together.  We were supposed to be in high school together and be at each other’s college graduations and weddings.  We were supposed to be aunts and uncles to each others kids and our kids were going to be cousins who would go to the beach together.  We were supposed to be able to call each other and complain about Mom and Dad and have secrets between us that we would never tell them.  But none of that will happen.

Now, the only way I can be the best brother I can be is to bring her flowers to her site and talk to her in my mind.  But the other thing I can do is help to find a cure for the disease that took her from me.  My gift to her to prevent someone else losing their best friend too.  She should still be here with me today, riding the bus to school, laughing, playing and fighting – the way that brothers and sisters were meant to be.  But she’s not.

I hope that you will give today in honor of my best friend and sister Isabella.  Together we can make a difference and stop this awful disease from taking one more kid from a family.  I know she is looking down on us and is hopefully proud of the brother that I’m still trying and will always be to be to her.  I miss her so much.

– Grant Santos, Isabella’s Brother

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It started with a girl. And she is changing the world. June 28th will mark the 6th anniversary of Isabella’s passing. Please help us near and far keep Isabella’s legacy alive.
 
– Make a donation: donateisf.org
– Participate in our Sept 5K/10K: 5kforkidscancer.com
– Sign up as a MIBG Ambassador: https://bit.ly/2MsUQdm
– Sign up for Isabella’s Dream team: https://bit.ly/2smlhqh
– Participate in our CBCC platelet drive June 21-28: https://bit.ly/2sVjafX

Things we hate to do, but still need to be done

Written by Erin Santos, Isabella’s Mom

I get it.  It’s not a fun thing to do.  You may drive all the way to the center and get turned away.  It’s cold in there.  It may take them a couple of tries to find a good vein.  You are worried you might pass out.  It might be uncomfortable for a while.  It’s boring.  It may take a little longer than you want it to.  I know all these things that go through your head, because they go through mine too.

You would think after our family’s experience, I would be giving blood every chance I could.  But, like you all – I get busy or some of these excuses start ringing in my head.  I have to be honest though, I do try as much as I can to give blood if I have the chance at a blood drive.  Giving blood doesn’t take long at all and other than having to control my alcohol or exercise that day – it doesn’t impact my life too much.  It’s like voting for me.  I feel good doing it and feel proud walking around with my elbow wrapped up in horrible blue tape for a couple of hours.  It’s like a battle scar that somehow says, “I care”.

Platelets.   For some reason this process is a whole new ball game.  I don’t give them as much as I should.  I’m just lazy about it really.  I’m very particular about my platelet giving.  It is a must to have someone with me to entertain me for 90 minutes.  I can’t focus on Isabella too much in those chairs or the experience may become to painful.

I have had some very memorable platelet donations.  The first anniversary of her death, I decided to schedule a platelet donation during the hours she died of June 28th.  I figured that if I was going to do this in her honor, let’s really do it.  The center was full that day as we were really pushing for 100 platelet donors that week, which is harder than landing on the moon apparently.  I sat in my chair and watched seas of purple come in and out.  Everyone knew that I was struggling because I sat there trying to have conversation, but knowing that tears that were falling slowly from my eyes as I talked.

I could see the hour of her death approaching and I just wanted to die.  My brother came in during that time and sat with me.  I think he gave blood instead of platelets that morning but all I really remember was him being with me.  He was there with me on the day we found out she had cancer, up until the day she died in our house.  He is a quiet brother at times but his presence is heavy.  We don’t often talk during these times about what is really going on in our head – it’s like an unspoken thing.  He knew how hard it was for me as I sat there and sobbed.  He just sat there – understanding how the things we hate to do, still need to be done.  This is not where I wanted to be on this morning and he knew it.  He knew I wanted to be in my bed, sobbing and not sitting here in this gray chair.  But once again, I was doing something, not for myself, but for her.  It was the longest donation of my life – but the most meaningful.

We left that morning together and drove to pick out an engagement ring for his girlfriend, Laura.  He let me be a part of a huge day in his life, maybe because I let him be a part of mine.  We went to lunch and had a drink and laughed.  By then my tears were dried up and I had focused on the excitement of his day.  He was starting a new chapter and I got to be there for it.  It was a good day in the end.

Each year as this date approaches, I feel myself wanting to retreat.  I have gotten a little smarter and try to no longer go during that hour of her passing.  It’s just not a smart thing for me to do anymore.  But I still go.  I go because I know how important blood and platelets were to her survival.  I go because I remember her bruising from the slightest touch and how platelets repaired her body so easily.  I go because I remember her not being able to walk into the hospital, only to find out that she was in such desperate need of a blood transfusion that I would have to carry her tired body everywhere.  She would run out of the clinic after her transfusion, as if the events of the earlier day never occurred.

I go because every time I’m there and I check in, the staff knows me and knows her.  Someone there always says a kind word to me about her legacy and I know there is no where else I should be.

I go because it’s the right thing to do.  I go for her.

Please help us honor Isabella through your platelet donation with The Community Blood Center of the Carolinas during the entire week of June 21-28…AND at ANY of their locations.  Our goal is a 100 donations.

– DATES: Thursday, June 21st – Thursday, June 28th
– GOAL: 100 donations
– PHONE: 1-888-59BLOOD / Can call to schedule at any center
– EMAIL: plateletdonor@cbcc.us

What is your Why?

In the fundraising and nonprofit world we all have our own WHY for WHAT we do.  We talk about WHAT our charity is about and WHAT we do to fight… but connecting that WHY is the difference when trying to make a connection in fundraising.  The WHY is the goosebumps and tears that move donors to action.

Our ISF team talked several weeks ago that we wanted to ask our Dream Team and our MIBG Ambassadors this one question:  WHY do you fundraise for the Isabella Santos Foundation and pediatric cancer. It’s a question taken from Simon Sinek’s book and TEDx Talk, ‘Start With Why’… aimed at inspirational leadership.  For us at ISF, Sinek’s thoughts our perfect for fundraisers too.

Tim & Granddaughter

The funny thing is we haven’t asked this question to our fundraisers yet… but our faithful and consistent supporter, Tim McBride, shared his WHY this weekend.  We all have them.  Some very specific like Tim’s.  Some maybe not so specific.  But the WHY is what means the most.  

Tim, your WHY stopped us in our tracks.  It gave us goosebumps.  We thank you for using your pain to make a difference in this world…

“People are always asking me why I’m so passionate about raising money for cancer research, treatment, and patient services. I have many but this started it off. I always thought (and still do) that my brother, Mike McBride, was the greatest athlete in the world. When I was young, Mike, my Dad, and I would watch pro football on Sunday afternoon. I remember my Dad saying he would see Mike play on Sunday too. I wanted him to think I was good too. When I was 8 years old, I entered a Punt Pass and Kick contest and was fortunate enough to win my age group. I walked home with my Redskins jacket I won for first place. I went to show my Dad so he would say I could play in the pros like Mike. But cancer was doing its job on him. He had a brain tumor and this wasn’t a good day for him. After I told him I won and showed him my jacket, he just laid there in the bed. As I was leaving, I heard him ask Mom, “who was that?” I have never forgotten that day. I knew I was never good enough to play on Sunday but that pain has driven me to want to raise money so a kid never has to feel the pain I did that day.” 

-Tim McBride [McBeast, ISF MIBG Ambassador, Dream Team Member, Run-Streaker, Cancer Crusher, Santa Clause, & all over Bad Ass]

WHAT IS YOUR WHY?

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It started with a girl.  And she is changing the world.  June 28th will mark the 6th anniversary of Isabella’s passing.  Please help us near and far keep Isabella’s legacy alive.