We all know that childhood cancer is a killer. Cancer is the second leading cause of death in children and 1,960 children will die from it this year alone. A form of childhood cancer killed my daughter. Her killer's name is Neuroblastoma. Her cancer stalked her for five years. We would beat it down, hide from it, trick it and then celebrate its death. But one little cell would multiply, and before you knew it, the gang was going after her once again.
After five long years, those cancer cells finally killed her.
Why is this felon still roaming the streets? Because only 4 percent of federal funding for research goes to all childhood cancers combined. So when the dollars are cut, my daughter's killer is not captured quickly enough. For parents of children with these diseases, this is a hard pill to swallow.
Want to know the crime record for Neuroblastoma? This killer accounts for 7 percent of all children's cancer diagnoses and is responsible for 15 percent of deaths from ALL childhood cancers. It is an aggressive form of cancer because two out of three patients diagnosed with this form of cancer are already high risk at the time of diagnosis. This cancer will try to kill children over and over again with a relapse rate of 50-60 percent. The survival rate for a relapsed patient is less than 20 percent. Neuroblastoma does not discriminate. It is slaughtering our children and we need to stop it. It is still on the loose, out there stalking and killing more children daily, wrecking families.
For Childhood Cancer ACTION Month, I want to give a glimpse for 30 days of what cancer stole from my family, and what it left behind when it took my daughter, Isabella. My hope is that you will donate to childhood cancer causes this month and every month. It's hard to get people to listen. There are so many worthy causes in the world, but once your child has been taken out of your arms and placed in a funeral home van in your driveway, you will never think about anything else. We need to stop this killer. It's not too late to save other families from losing their children. We need to allow these children and their families to experience all the things they are destined to do in their lives.
30 Days of What Cancer Stole from My Family, and What Is Left Behind:
We met the CEO of Macy's and his wife at a Ronald McDonald House of New York, Inc. event in 2010. Isabella spoke with them briefly and made quite the impression on them. They asked what she wanted for Christmas this year and she said a wedding dress. A month later, a custom made white dress was sent to us from Alice + Olivia by Stacey Bendet, a well-known designer. I'm not sure if the designer anticipated her wearing it with a white Disney Princess shawl over it, but that was Isabella's added touch. Isabella told me she wanted her wedding dress to look just like this when she married her little brother Grant someday.
Cancer stole her wedding day.
This is what cancer looks like in the end. The bones in her back were so evident, but her brother continued to rub her back and act like he didn't see what was happening. He fell asleep next to her that night. It's the last picture I have of them together.
Cancer stole his sister.
We get to watch my daughter play in Isabella's room with her American Girl dolls because her room is NOT off limits to her. This also means we have to listen to her bedroom doorbell ring, her door squeak open and close and the sound of little girls playing where one should be.
Cancer stole a playmate.
All she wanted was a kitty. We fought her forever, but folded in the recovery room after another brain surgery. She dressed "Jake" up in baby clothes, walked him on a leash and painted pictures of him that we have hanging in our house. She screamed with joy when he jumped out of the box on Christmas morning. Now, he is loved by the ones she left behind. She is somewhere surrounded by kitties, I hope.
Cancer stole this kitty's Mommy.
We fought every day about what she wanted to wear. It drove me crazy how it never matched. But, I look back and realize that it was the one thing that she felt like she could control. I wish I would have just let her have more control in her life, since everything else was in someone else's hands. Her white coat still hangs in my closet and the rest of her clothing is slowly making its way to her sister's closet. It's going to be hard to see her sister in these items, but she can't wait to wear them. Especially those red boots.
Cancer stole a fashionista.
When Isabella was in treatment, I was experiencing an emotional roller coaster that was hard to hide. Now I'm left with high anxiety (especially with loud noises) and other emotional tics. I go through periods of losing my hair, I have trouble sleeping, and I'm hesitant to let new people into my life because I feel like I'm a ticking time bomb.
Cancer stole my sanity.
This self-portrait Isabella drew of herself hangs on our pantry door and will never come down. She expressed herself every day through art. I still open drawers in our house and find little drawings or notes she wrote. I would love to see the pieces she would have continued to create.
Cancer stole an artist.
Whenever there is a special day for Isabella, Grant likes to bring her flowers. Today he picked these out to leave at Isabella's site because the upcoming race event is all for her. "Mom, she would love these!", he tells me. You're right buddy, she would love it all.
Cancer stole my son's innocence.
Stuart and I bought a run-down little beach shack on Oak Island when I was eight months pregnant with Isabella. We had dreams of our family creating years of beach memories here as Stuart and I would watch them play together in the surf and sand. Instead we take walks, just the four of us, as Sophia reminds us that "we have one missing." She loved to collect seashells, play in the sand and stand in the waves.
Cancer stole our beach dreams.
Isabella was always known for being an "old soul." Because of this, many times the people that she bonded with the most were women who weren't close to her age. There are so many people who brought joy to her life and I have to remember that while cancer stole something from her immediate family, it also stole something from lots of other people as well. I would feel safe saying that these women below are people that she would have called her best friends too. Miss Chrissy -- her number one friend. They went everywhere together and shared a bond that she had with no one else. Miss Deb was her NYC Fairy Godmother who flourished her love of cupcakes and nail polish. Nana was her Charlotte Grandma who was with her from the day she was born until the day she passed away, always cuddling with her. Miss Stephanie was Soleil's Mommy and Isabella would have lived with her if I would have allowed it. Miss Jen, who she shared a cancer battle with in NYC. My hope is that they are playing with fat cats together in heaven. And lastly, my Mom, who was like a second Mom to her all those years. Every child should have that kind of relationship with their grandmother. It was perfect and so full of love. She meant to the world to all of them.
Cancer stole these women's hearts, too.
She never cared who was watching. She was always on stage in her mind. It didn't matter what song was on, she was dancing. The videos that I have of her dancing to Beyoncé, Taylor Swift, Katy Perry or even "Baby Got Back" still make me laugh to this day. They are videos that capture her in her element. Nothing about these videos shows sadness, sickness or cancer. I wish I had more videos like these.
Cancer stole the best (and worst) dancer in history.
This video is such a dramatic change from the video of her dancing a day ago. This is my least favorite video of her. It's Stuart's birthday and she tried so hard to get out of bed to sing to him. She has started to close one eye in this video because the cancer in her brain was taking her vision. She died four days later in those pink pajamas. The last couple of years, Stuart's birthday has been miserable. He just can't shake her on that day, no matter how hard he tries. I'm not sure if he will ever be able to enjoy his birthday again.
Cancer stole my husband's special day.
Stuart and Grant surfed the day away. I sat in my beach chair as Sophia played next to me in the sand for hours without her. Very rarely did Isabella and Sophia have something they enjoyed to do together because Sophia was so young. But when we were at the beach, it was where they connected. They would bury my feet, build sand turtles and make castles until they were covered in sand. Isabella would give her direction and she would do the best she could with her chubby little hands.
Cancer stole a sand castle builder.
Isabella had lots of special friends. But there are a couple who were really close to her heart. Soleil was her opposite in looks but they met when they were 2 and became fast friends. Nothing would cheer her up in the hospital like a visit from her BFF. Julia was a new friend she met in kindergarten at Calvary. She carried Isabella around like a baby and protected her from everything. Dylan was her new Marvin friend who was a little cutie like her. They bonded over their love of kittens and bunnies. Madison lived next door and whenever Isabella was healthy she wanted to run over to be with her. It seems crazy when I see these girls now, because they are huge. I can't even imagine Isabella like that. I wonder if Isabella will stay in their hearts forever like she does in mine. I'm so thankful for what they each gave her.
Cancer stole their best friend.
We watch the Carolina Panthers and I am reminded of our little cheerleader. Make A Wish and the Carolina Panthers Top Cats made her an honorary Top Cat for the day in November of 2011. She was low on energy but she muscled up the strength for the day, even catching a "cat" nap at halftime. The crowd was so amazing to her and everyone in the Panthers organization laid out the red carpet for our family. It was one of her favorite days of her life and she had an instant connection to all the girls. I can never thank them all enough for what they gave her on that day. Her picture still hangs in the Top Cat locker room.
Cancer stole a little Top Cat.
It feels like the majority of my time with Isabella was spent this way. From the time she was diagnosed at 2, we began this sleeping bond that lasted up until she took her last breath. She would curl right up next to me and our bodies became one together. All those nights in a twin hospital bed will teach you how to get comfortable. I would curl up against her bald head and fall right to sleep when I knew she was OK that night. Or there were times when I held her tight and would cry and plead for the cancer to not be inside her little melon. For years, when Stuart traveled, I would bring her in bed with me. It was our little secret. All I know is that we both felt safe like this. It's one of things I miss the most.
Cancer stole my security blanket.
Isabella always had the smallest hands and feet. She was a regular at the nail salon with me, always going for those obnoxious bright colors with a layer of rainbow sparkles over the top. Her hand felt so perfect in mine. It seems like her feet were a size 10 for about three straight years so you would think buying shoes would be easy. But, like most things with Isabella -- it was a struggle. Nothing ever fit her feet right... according to her. We would buy shoes and she would never wear them, preferring to be in flip-flops or barefoot. Her feet would sometimes swell during treatment and give her "potato feet" as she called them, which added to the shoe issue. Now Sophia is a size 10 shoe and is getting lots of use out of her sister's favorite (and not so favorite) shoes, as you can see in the third picture. I can still picture everything about her hands and feet and wish I could kiss them.
Cancer stole her tiny hands and feet.
When you have a child who has immune system issues, you have to find things to do inside to entertain them. So that's just what we did. Isabella loved to bake and would spend hours in the kitchen making the perfect cupcake. Magnolia Bakery allowed her to take over the store for her own cupcake decorating session on this day. She was in heaven. Each cupcake was decorated as a standalone masterpiece. I remember it well because I stepped outside to take a call from the hospital to tell me that her scans that week showed that she had cancer all through her body. I had to come back and watch her little hands decorate cupcakes as best as she could while she battled a headache, which was ultimately cancer in her brain. Without her here, we do very little baking. If I buy pre-made cookie dough now, it's a special occasion. Baking has come to a complete stop in our home because there is no one to decorate the cupcakes I make.
Cancer stole my little pastry chef.
The worst part about Isabella's relapses was answering her first and only question, "Am I going to lose my hair?" We hated having to tell her yes, so to calm her nerves, we would dye her hair red like Ariel's. She LOVED it. It never lasted more than a month but I love all the pictures that were captured with the red. It feels like when she was at her best. So, every year for the race I attempt to dye my hair red in honor of her. I'm never as brave as she was with that Ariel shade, but I do my best. She loved when we would go red together. I did too. This one's for you, Ib.
Cancer stole my favorite redhead.
We are all running around crazy doing everything we can for the race. I have to stop and remind myself to breathe. It's so hard to find the motivation at times now that she is gone. Especially because she fueled this engine for so long. She would wear the shirts, pass out flyers, attend the events, be on TV... whatever you needed her to do. She would walk right up to people and ask them to come to her race. She wasn't shy about calling you out because she knew how important it was. I would just stand in her shadow while she put all the puzzles in place. Isabella would be dragging you to the race, hugging you as after you crossed the finish line, then dancing with you until the music stopped. I can't even imagine what this event would look like if she were still here today. We can never compete with her enthusiasm; we can only hope to make her proud.
Cancer stole our biggest ISF supporter.
All she wanted to do was to grow. Her friends towered over her and even her younger brother was passing her by. She wanted me to buy her shoes with heels or a wedge on them that she could wear so she wouldn't stand out so much. The treatments put her growth on hold for what seemed like forever. We would measure her in the garage but that line never moved much. If she were here today, she would be a 9 1/2 year old girl who was 52 inches tall. Which ironically is exactly how tall Grant has measured. Instead, she never reached more than 42 inches. Our last measure of Sophia (age 4) just last week clocked her in at the height Isabella was when she passed away. I look at Sophia and it seems crazy to me that I'm looking at a shell of Isabella. "I'm finally as tall as Isabella, Mommy!" Sophia has been waiting on this day forever. I have been dreading it.
Cancer stole her growth.
I loved holidays. I loved them because she got excited about each and every one, from Valentine's Day to Christmas. We made decorating plans, we made special crafts, we baked special cookies, we sang songs... we did it all. Now every holiday is a bitter reminder that she is gone. Her handwritten turkey place card holders, everything on the Christmas tree, her handmade Valentines. We trip over her during these times. I want so badly to be like the other parents at the Mother's Day celebrations at school. I want to smile as Sophia sings songs to me and not be the sobbing Mom in the room. I want to feel truly happy watching them come downstairs on Christmas morning and tear through Santa's presents. I try so very hard to be present in these holidays for my kids, but it's hard. At times I feel her just standing behind me, with her hand on my shoulder telling me that it's going to get easier. I need it to be.
Cancer stole EVERY holiday.
Isabella's name is coming out of our mouth every minute lately. So no wonder Sophia has become obsessed with her too. She told me that she wants to bring her scooter or her bike out to her so she can ride it. I tell her that she can't ride it down here with us but maybe in heaven. I ask Sophia what she thinks Isabella is doing in heaven. She tells me that God is busy teaching her all the things that he knows how to do and she is busy all day being her guardian angel. (I oddly have the most religious kids on the planet.) I hope that Phia is right. So today I let her pick out a gift to bring her. A big dragonfly balloon, a Frozen balloon and lots of pink and purple balloons. She always touches her name plate and kisses it. "Hi Isabella, it's me, Sophia," she always says.
Cancer stole her big sister.
I always knew that when I gave her a coin to throw into a fountain, she was wishing for two things. First... no more cancer. But second would always be to go to Disney. We went, thanks to Make a Wish, and became very repeat customers of theirs for many years. She would come back from relapses and sickness out of nowhere because we had a Disney trip planned. Of course Disney always laid out the red carpet for her, too. First class all the way. We took her for the last time a couple of weeks before she died and it was a tough trip. She was thin and weak and couldn't enjoy it like she once did. She began to lose her vision due to cancer taking over her brain on the "Small World Boat Ride" as we called it. We spent the majority of the time in a blacked-out hotel room, listening to the boats go back and forth to the Magic Kingdom. We have tried to take Grant and Sophia back, but the trip is so painful for Stuart and me. Everywhere we go is a reminder of her, and it's hard to stomach the trip. Our poor kids ask to go just about every day, but we just can't do it. Hopefully one day we can find our happiness there again.
Cancer stole Disney World.
Her voice was so adorable. It was so high pitched and yet so soft too. There are times when something plays in the house that has her voice in it and it stops us all dead in our tracks. Sometimes I can't deal with the emotions that come along with it and I have to turn it off immediately, but sometimes it catches me and I become lost in it. I miss having her little voice around the house, I miss hearing her sing in the car and I miss hearing her laugh. I miss the way that she would call out Grant and Sophia's names when they would be playing. I miss the way she screamed "Daddy" when he would come home from work. I miss the way she said Mommy to me every single day of her short life.
Cancer stole her sweet voice.
Grant and Isabella were thick as thieves. He was her only playmate most days, and he loved the role of taking care of her. Bedtimes were all about wrestling and laughing until finally we would put them to bed. Sure enough, we would always hear one of them out of bed every night. They just wanted to give each other another kiss good night. Now, he listens to a recordable frame of her picture with her voice saying good night and falls asleep listening to "The Little Mermaid." It's how I know he thinks of her and misses her when he falls asleep.
Cancer stole a good night kiss for Grant.
Isabella always had the most gorgeous blue eyes. I'm sure that they stood out to us more once she lost her hair, but they just captured you. Her pupils were so large, a result of the treatment she received which made her so sensitive to the sun. I always remember when she would look right at me and say, "Mommy, I can see myself in your eyes." I know she was just talking about her reflection, but to me it meant more than that. One of the hardest things about her death was the fact that her eyes no longer closed that last day she was alive. It was at that point that I knew that she was already gone, because the light in her eyes had vanished. It was so hard to look at her because her eyes always spoke so much to me and then all at once, they were silent. Even after she passed, they remained open, no matter how hard I tried to close them. It was a vision that haunted me forever. But when I look at this picture, I am reminded of their beauty. I find myself staring at her eyes in pictures because they bring me right back to her.
Cancer stole those eyes.
Time to open up the vault a bit. These pictures were taken in her last week by my friend Angelo Merendino. I don't share them often because for one, I look really rough in the pictures. (Ange refused to do touch-up!) But also because they are oddly very personal to me. Ange captured moments when we didn't know he was taking a picture. He captured REAL moments between the two of us. I loved that I wasn't overtaken by grief in these pictures, I was just being her Mom, she was being my daughter and we were just loving on each other like we normally did in private. This is what a lot of my time with her looked like, just making her feel comforted and loved. It just wasn't captured much in pictures. I miss these times... just her and me... together. I LOVE these pictures and wish I had a million of them.
Cancer stole my daughter.
This is the last family picture I have of the five of us together. She left us just a couple of days later. I look at this picture and my heart sinks. These poor people have no idea of the storm that is about to descend on them. We just thought we were taking another family picture. We didn't know it would be our last. Now we have to live the rest of our lives without her.
Cancer stole our heart.
This is our first family picture that we took without her. It took some time until we were ready to do it. Pictures just never seemed complete with the four of us. You never stop thinking you are a family of five. You never stop answering that you have three kids, or two daughters. It never stops feeling like something is missing, because something always will be.
Cancer stole my family.
To follow the full 30 days of What Cancer Left Behind, visit the Isabella Santos Foundation Facebook page.