Her legacy…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Her legacy…

Santos Family

“I look at what she has accomplished in the last 5 years since I last saw her and it makes me so proud.  It makes me think that we really must have done something right.  All these years that we beat ourselves up on where we made a mistake or wrong turn that ultimately ended her life.  But, maybe all those decisions were the right ones because they brought us to this place we are now, to a place where her legacy is outliving her actual life.  It brings me to a place where somehow her death is making the world a better place for someone else.

This thought is something that helps me sleep at night because I know this is only the beginning.  All of those pieces of her may be slipping through my fingers in my own life, but it’s building something bigger than me.  She experienced all that pain, so that this wonderful thing could happen.  And maybe now I have to experience all the pain to keep allowing it to grow.  It’s the least I could do for her and I should feel honored to do it.

Not a day goes by where I don’t miss her.  I still can’t honestly say I wish this never happened to us even seeing all the good it has done.  But maybe that day is coming where I will understand it… I’m getting there.  I just wish she were here to witness it all alongside me.”  Isabella’s Mommy

While Isabella didn’t win her fight against neuroblastoma, you can honor her and help families and kids in the fight against theirs. For our 10 year anniversary and with a goal of $1,000,000 we are looking for 100 people to become part of ISF as a Sustaining Monthly Donor.

BECOME A SUSTAINING MONTHLY DONOR

MAKE A SINGLE DONATION

And we both knew it was over…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

And we both knew it was over…

Isabella, 2005-2012

“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.”  -Isabella’s Mommy, June 28, 2012

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

My gift to her…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind. 

My gift to her…

Speech given by Grant Santos (Isabella’s Brother) at the 2nd annual Coffee for a Cure Events.

Isabella and Grant

“Hi, my name is Grant Santos and I am Isabella’s little brother.  Isabella was diagnosed with Neuroblastoma just 6 days after my 1stbirthday 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.

Isabella and Grant

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 is 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.”  -Isabella’s Brother, Grant

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

Where she found the strength, I’ll never know…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Where she found the strength, I’ll never know…

Isabella and Daddy

“Unfortunately, Isabella is no longer getting out of bed.  As a matter of fact, she is barely moving.. or barely awake.  I know that CB could never give you a crisp enough picture of what is exactly going on here and I should do better at that.  So many of you have followed her in this journey for so long and I know you are wanting to know how she is doing.  Our nurse visit today told us that we are just a couple days away from her passing.  Her heartbeat is slowing down but sounding different because her heart is working harder.  Her oxygen is slowing down a bit too.  Her breathing is slowing down so much in fact that I just stare at her.  She will take a breath and then it will be so long until the next one that I find myself holding my breath until she takes one again.  She sleeps most of the day and gives me small glimpses until what is in her mind.  I lay with her so quiet and still and listen to the things that she says in her sleep.  She asks me if I see things or tells someone to wait on Mommy.  She will say Grant’s name but then it wakes her and she says that she was just dreaming.  She flinches and smiles, makes gestures with her hands and squeezes my hand softly.  It’s like she is talking to someone.  But the occasional smile let’s me know that it is not conversation that scares her or makes her sad.  Each night Stuart and I snuggle in beside her and tell her things just in case she is not with us when we wake up.  We have been told by hospice that we are lucky.  She is relaxed, comfortable and not in pain.  So many children pass in pain or discomfort or even worse.. scared.  She seems to be at some peace.  Grant misses her already.  He comes in bed and wants to crawl in next to her.  The other day he just snuggled beside her and scratched her back while they (he) watched a movie.  She didn’t moan or cry out for him to leave.  She just laid there with him quietly.. as if to give him a moment.  Sophia walks around dressed in princess outfits and opens the door occasionally to say, “Bella!” but then is quickly shooed out so Ib isn’t disturbed.  Behind the scenes we are making arrangements so that we are as prepared as we can be.  We are once again overwhelmed by the things showing up at our door.  Fruit, flowers, meals, cards, items for the kids.. amazing stuff really.  I’m picturing the mounds of thank you cards that I want to write when this is all done but I’m also scared to write them because it will mean she is no longer with us.  It is becoming a beautiful thing that I’m watching honestly.  You think you love your kids, but this is like no love I ever knew.  I feel so privileged to be hand in hand with her during this last time in her life.  She is finally allowing other people to have quiet moments with her as well.  It’s as if she is giving them some last gift to say thank you to them as well.  Even my Mom who she adores was moaned and groaned at for some time.. but she is curled up in bed with her now receiving her gift from Isabella for all she gave up in her life.  I’m so thankful that everyone who is important, gets to be a part of this in the end.

Sunday was Stuart’s birthday.  Isabella found the strength inside her to come down and sing to him.  Where she found the strength, I’ll never know.  She gave him an entry to the NYC marathon this November 4th that will run right down 1st Avenue by Sloan-Kettering and the Ronald McDonald House of NYC.  Stuart will be running on behalf of Fred’s Team which raises money for MSKCC’s Neuroblastoma research program.  Stuart has lots of motivation for this run and he will amaze us all.  She will be there in spirit cheering him on… and even in her passing, she is still trying to make a difference in the kids that will come behind her.”  -Isabella’s Mommy, June 26, 2012
We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

What remains…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

What remains…

One afternoon in late summer 2010 a pretty, vibrant mother with long dark hair will come breezing in to the studio to buy the largest quantity of art classes available.  She will tell you how much her daughter just loooves art and will mention almost as an oh-by-the-way that her daughter has cancer.

The first time Isabella comes to class, you won’t really know what to expect. She is an energetic, healthy looking little five year old and there is nothing about her appearance, demeanor or personality that clues you in to her dreaded disease, Neuroblastoma, except that she has a quarter inch of fuzzy hair and a prominent scar on her head. While chit-chatting waiting for the other kids to arrive, she informs you that her favorite song is Party in the USA by Miley Cyrus. As you fire up the iPod in the studio, as if in a trance she jumps up and launches into a full dance routine, completely oblivious to you, the other teacher, or any of the kids watching her. She’ll continue to regale you with her concert-worthy performance for the duration of the song without ever slowing down. It will be obvious to you that she’s dancing for her own enjoyment rather than anyone else’s, and you’re pretty sure she couldn’t care less that anyone else is even there.

“Isabella, WOW that was amazing! Where did you learn to dance like that?!”

“My Dad,” she’ll casually reply as she sits back down not even the slightest bit out of breath, and asks what we’re making that day.

From that first day in class, each time you see her you will never know if it will be the last. Not wanting to seem inappropriate or focused on her illness, after the other kids leave, you and your friend Alison, who is helping at the studio that day, send her home with a blue zebra stripe tutu and matching case filled with art supplies, hoping you’ve made some small impression on her and that she enjoys them when she’s in the hospital. From that day forward, pretty much every time she comes to class she will wear the tutu, but almost two years later you won’t be entirely sure that she knows your name or any of the other teachers. Unlike most kids her age, she is completely self-possessed and never seeks approval, validation or any kind of reassurance, and as long as you pass her the color she needs, your presence is of relatively little importance. She will often sign her artwork Isabella Joanne, and over time you will become pretty convinced she is an old soul.

She will attend Saturday classes fairly regularly, sometimes every few weeks, sometimes every few months. In the all-too-brief time that you will know her, she’ll paint a colorful heart on canvas for Mother’s Day, a chalk pastel “love-a-saurus” for Valentine’s Day, a watercolor dragonfly, a cat named Jake, a dream catcher filled with miniature drawings of everyone & everything she loves, a flying cow, and you wish you could remember what all else. You always take lots of pictures of the kids’ artwork but you’ll later wish you had taken a lot more of hers. Sometimes she’ll be completely bald, other times she’ll have short red hair. Standing in line at the sink one day a little boy will nonchalantly ask her why she doesn’t have any hair, and she’ll just ignore him, completely unfazed.

Often, the spunky little girl who comes to class doesn’t seem to be the same one that you just bawled your eyes out about while reading her mother’s Caringbridge journal, sometimes seeming to bounce back to good health almost overnight.  Every now & then you’ll almost forget that she is even sick, except when she suddenly stops painting and crawls up in your lap and hugs your neck like a baby tree sloth.

In class, she’ll mostly talk about her cat, her big brother & baby sister, her grandma, DisneyWorld & the TopCats. She’ll stubbornly reject any creative suggestion you will ever give her about her artwork, preferring always to do it her way. She’ll have very particular ideas about how she wants to do things and one day when her penguin’s wings don’t look quite right to her, she will actually stand up and stomp her foot and refuse to continue when you won’t let her start completely over five minutes before the end of class. On more than one occasion you’ll be slightly embarrassed when her mom picks her up and sees that she is visibly upset or has just barely stopped crying.

One day during summer camp in 2011, at snack time you’ll ask her if she wants to tell everyone about her upcoming 5k race. She’ll look nervous and say “I don’t know.” You’ll drop it but a few minutes later she’ll come up to you and, her voice shaking a little, tell you she decided she would like to tell everyone. She’ll walk to the front of the table and courageously announce that she has a race every year to help kids all over the world who have cancer, it’s called the Isabella Santos 5k, and she even has her own website! And its ok if you don’t want to run, you can just walk and you will still get a t-shirt! Normally pretty rambunctious at snack time, the kids will sit silently listening. You’ll jump in and quietly explain that Isabella has cancer but that she’s in remission, does anyone know what that means? Struggling to make them feel comfortable enough discussing it, you tell them it’s ok if they want to ask questions.  { silence  }  “Miss Jennifer, what are we are going to paint next?”

During the Christmas holidays that year, you’ll be overjoyed that she has been doing so well with her recent treatment, and feel lucky to see her practically every day, sometimes twice a day. In classic Isabella fashion, she’ll waltz in to the cookie decorating workshop toting her own containers of orange decorations, not caring in the least that they are from Halloween. You like her style. In the Peppermint Forest gift-making workshop, she’ll track you down to ask you how to spell “Mrs. Keagy”.

One of the stations is a mulling spice sachet table, the concept of which is of course completely lost on the kids. { What were we thinking?? } Isabella will be running a tight agenda that day, so she’ll quickly bundle some star anise, cardamom pods & cinnamon sticks into a piece of cheese cloth, tie it with a ribbon, and announce that this one (whatever it is) is for her uncle. “Isabella – smell it! Doesn’t it smell good?” With several other stations yet to get to, she’ll just look past you and say “Not really.”  You’ll notice most of the other kids that day will also decide that a mulling spice sachet is the perfect gift for their uncle!

As we’re winding down before the end of the workshop, you’ll walk over to the book shelf and reach for The Giving Tree when Isabella comes out of nowhere excitedly announcing that book is her and her Dad’s favorite book – ever since her Dad was a little kid – and begs to please read it to the class. She’ll sit on your lap, reading it in a strong confident voice, stopping to instruct you to handle the longer passages she doesn’t want to be bothered with. As she is reading, you’ll watch her eyes and facial expressions and scan the room full of kids & a few parents listening so quietly and intently, and make a mental note to remember this moment.

The last time you’ll ever see her in April of 2012, she’ll show up in her tutu and a little fresh-picked red flower tucked behind her ear. Something is, but isn’t, different. Before class you’ll ask some of the new kids how old they are and Isabella will try to pull a fast one and tell everyone she is almost eight. “Um, ex-cuuuuuse me little missy, but I think you just barely turned SEV-EN! Ahem!!”  On June 28, 2012, when everyone who loves Isabella is forced to accept that she will forever be seven, you’ll remember her saying that and start to cry.

That day, you’ll find yourself wanting to follow her around with the camera a little more than usual, and feel a little weird when you are compelled to take a picture of her hand casually resting in her apron pocket, and her chubby little blue sparkly toes as she is standing at the wall painting. You’ll secretly be a little happy when her mom is late picking her up, giving you and Miss Hannah time for a quick off-the-cuff game of “Read. My. Lips.”. Isabella will start off giddy with excitement and can’t wait to stump you, but will quickly grow exasperated and indignant every time you guess her words on the first try. “How are you doing that??” she’ll moan, as her mom comes in the door.

You won’t really remember anything special about saying goodbye to her that day. You’ll later discover her little red flower that you set on your desk so she wouldn’t lose it, and will put it in a safe spot for her, unaware in that moment that she’ll never be back to reclaim it.

Of all the beautiful things that Isabella will leave you with, it will be the only tangible object that you can pick up and hold in your hand, as precious and weightless as a diamond.”  – Jennifer Bryant, Small Hands Big Art

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

The before times…

June marks a significant date as it is the month that Isabella lost her fight to neuroblastoma. This year will be 5 years since we lost her to this horrible disease on June 28th, 2012. The Santos family has been through their ups and downs in dealing with losing a daughter, sister, granddaughter, great-granddaughter, niece and cousin. But as you have most likely noticed, they have persevered… and they lead the push to fight for kids with cancer in Isabella’s honor. This month we will be sharing both the happy and raw times as we celebrate Isabella’s spirt and the legacy she left behind.

Aunt Amy and Isabella

The before times…

“Newborn Isabella. That very first day. It’s one of the best memories for me. Rushing to the hospital to meet this tiny person who had, in a moment, made my sister a mother. The biggest eyes looking around with a puzzled expression, like a little old man who may have gotten off at the wrong stop. Tiny clenched fingers holding my own. Skin smelling that newborn smell and wrapped in that ubiquitous hospital blanket-the white one with the blue stripes, you know the one I mean. And me just holding her and marveling. My niece. My first niece. Erin is her mom. Forever, Erin is Mom to someone now. How crazy is that? Whispering in her ear that I loved her, how excited I was she was here at last, how much fun we would have together, how she was going to have so much fun with her cousins, when everyone grew a bit more, of course. It’s an ordinary moment. If we are lucky, we all have those moments-meeting the tiny people that first day. Whispering in their ear that they are loved and part of a family. Feeling that rush of emotion at the passage of time and that euphoria and that pure joy. It’s a feeling like no other. And I had that with Isabella. Holding her and marveling. She and I just looking at each other. Planning in my heart a lifetime of secrets and memories and adventures and stories and love together. I stayed in the hospital with them that night and loved waking to talk to Erin and listen to Isabella make those strange baby noises all night. Change her diaper. Hold her. Just let that joy, that happiness, for Isabella, for Erin, for the whole family, just soak right into my heart. I didn’t sleep much, but it was one of the best nights of my life.

At that point, I have to stop the memory sometimes. Because the sweetness is almost a pain. I don’t take that memory out to look at often. But I love memories like that one, of just the ordinary moments of the before times. Before cancer. Before ports and doctors and treatments. Before the Foundation. Before Isabella had to race for anything. When Isabella was just my amazingly gorgeous newborn niece and I was her joyful aunt. The pain of this memory is that I expected, holding my niece in the dark night of that hospital room, to have a million more ordinary moments with her. A lifetime of memories of shenanigans and secrets and stories and fights and drama and accomplishments to celebrate. Of Erin calling me and telling me what Isabella was up and me telling her about my girls. And that’s how it was going to go. But it didn’t. And so I tend to horde my memories of Isabella. My heart was ready for so many more than I have, so I guard the ones I have a little jealously. But I do want to share that one with you, that first night. Those whisper and her big eyes. Her warm body against my chest and all that joy.”  – Isabella’s Aunt Amy

We can accomplish so much more if we fight cancer together.  Learn more about donating to the Isabella Santos Foundation.

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