Christmas Fingerprints

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“Christmas Fingerprints…”

It’s that time of year again. It’s funny that no matter how much time passes I still go into the season forgetting that she’s not here. I start thinking of my Christmas list and I have to mentally note to not write her name down. I feel like each year we play a game of hiding our pain so that our kids can enjoy every bit of the season they can. They are so excited when we get all the decorations out, as every child should be. But as each box is opened, they squeal with excitement and Stuart and I endure pain every minute. Her handmade ornaments, her school crafts, her stocking on the fireplace all the way up to the angel on the tree that she and I went to Peppermint Forest to pick out together. Her fingerprints are all over everything. But, Stuart and I smile at the kids and decide together where we should place every single thing – knowing that we can’t make eye contact with each other for too long or we crack.

We try so hard each year to do new things for the season. I spend hours investigating places we can go that don’t have her shadow following us around. It’s harder than you think really. I’m always looking for that holiday adventure that is close by that makes us look like the best parents ever to Grant and Sophia, when in fact we are there because we are running from her. We have found lots of great new things that we do together and have even managed to keep some of her traditions in place to remember her by. Every Christmas Eve we still drive to Christmas town in McAdenville, NC to drive around and see the Christmas lights. We let the kids stand out of the sunroof and shout “Merry Christmas” to everyone walking around, just as she and Grant did for years. We wrap up the night at Red Lobster, which was her favorite place. Seems like an odd place to eat your Christmas Eve dinner, but the kids know that we are there because of her and they walk hand in hand with us with pride.

Christmas morning is always the hardest as we watch them come down the stairs. I can still picture Grant flying past her on the stairs as she took each step one by one with care – never learning how to walk down stairs correctly. The morning we gave her Jake was our best memory ever. We fought it for years, but after the last brain surgery – we could no longer say no. This big box sealed up with red wrapping paper that had kittens with Santa Clause hats on them. Her voice and laughter as Jake jumped out of the box is a sound I can hear if I close my eyes in a quiet room. She chased him around that morning with toys and treats – one of the best days of her life. Now Jake sits under the tree and watches Grant and Sophia tear into gifts, unaware that he was the best gift of her life.

We are getting better at this Christmas morning dance. We keep it light and cheerful with very little eye contact or embraces. We keep the music pumping in the background because in our house, silence is not golden, especially in December. Our kids don’t notice the missing piece anymore, which means we are probably succeeding as parents. Her stocking hangs with just an angel doll inside of it, watching over us, as she is most likely doing. Once the morning slows down, we pile in the car as a family and bring roses out to her site. The worst gift you can get a little girl on Christmas, because she should be opening everything her heart desires. But the roses comfort me because I can’t even wrap my head around what she would be into or what Santa would of brought for her this year. I no longer know her in that way – so roses are all I can do. Once her roses are laid at her resting spot and we take a moment to wish her Merry Christmas, I instantly feel the weight lifted off of me. We did it. We got through another Christmas without her and without it tearing us to pieces. Now there are only 364 days until I have to fight through this day again. Sometimes you just don’t get what you want on Christmas.

-Isabella’s mommy

Want to give a great gift this year? DONATE HERE to make a tax deductible contribution to help in our fight.

ib and jake

Thank You!!!!

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Sophia at race startThe #ISFTagTeam

TOOK ACTION TO ITS BEST

…. and the Results are IN!

To Our Incredible Supporters,

Words cannot express how grateful we are for you.
Grateful. Humbled. 

Appreciative and amazed….by each and every single one of you.
What a TEAM we have in you!

Thank you doesn’t seem to be enough when we look at what we have all managed to accomplish over the past 8 years. It is because of your continued dedication to helping us see through the vision to honor Isabella’s dreams during her short, but very inspiring life. Cancer may have taken her from this world- but it didn’t win. As we have said- Cancer messed with the wrong kid because we are not giving up. We are only getting better!

Thanks to YOUR support and unyielding dedication over the last 2 months – 

the ACTION TAKEN through various fundraising events, including the 5K for Kids Cancer, the Brew Bash, the ongoing efforts of the Dream Team training for their 1/2 marathon, as well as several other events has grossed over…

 $405,000! 

It is simply AMAZING and it is because of YOU.

You joined our team, alongside of so many others and …. TOOK ACTION!

In the first year- ISF raised $7000 and had 180 people registered to run. This year, the race alone raised over $300,000 and had over 2000 registered to run. Look where we have come…and we have done it, TOGETHER!
We are amazed and would like to take this opportunity to say THANK YOU!
Thank you for fighting this fight with our team.
It is incredibly important to us to keep Isabella’s dreams alive and do what we can to fulfill her wishes of a world with no more cancer.

It is hard to articulate just how much we appreciate the community support we receive and you continue to amaze us each and every year!!
We are so grateful for our sponsors, our donors, our local celebrities, our local schools, our local sports teams, our 5K runners, our 10k runners, our fun runners, our phantom runners, our fundraisers, our vendors, our volunteers, our local businesses that give to our auction, host IB days and for each and every person (near and far) that simply listens and shares Isabella’s story.
It ALL works together in a beautiful way to truly make a difference and impact others.

Sometimes it can be difficult to keep going when we know our efforts will not bring Isabella back- but in that same breath- we know that is the exact reason why we HAVE to keep going. Isabella would want for us to help the other children fighting today. Her life WILL change the life of others.

We hope that you all feel as appreciated as you are and that you feel the passion that each of us puts into everything we do for Isabella, for her foundation and for all children fighting pediatric cancer right now! Our hope is that we help make a shift in the future of this disease and will help fund research for a CURE! We look forward to communicating soon, where and when these funds will be distributed! 

We cannot thank you enough for all
that you do to keep Isabella’s spirit alive and well!

With utmost sincerity and very full hearts,

Thank you.

Erin and Stuart Santos, along with the ENTIRE ISF TEAM

Why She Did it…

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Day 25 QuoteDay 25
Why she did it…

Yesterday, I told my Mom I’m going to take a break from writing. I want you to write a blog on what the experience has been like from your point of view. Do what I do, have a glass of wine, sit on the back patio for 20 minutes, and write like you are talking to someone. What followed was not a traditional blog.

She wanted to do it, but it was hard for her. When I say that she put 6 hours into it, I’m not lying. She wrote, she revised, she had me read it and she cried. “It’s terrible. It in no way says what I want it to say. It’s just too hard to put into words.” I think she did a pretty great job of telling you her side of the story. But in case she missed a few things, here is what I saw from my point of view.

She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

-Isabella’s mommy

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Why I Go Red…

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Day 23 QuoteDay 23
Why I go red…

Every single time we had to tell her, I dreaded it. I found that whenever we received the news of a relapse, it was the first place my mind went. We would walk through the plan of new chemo drugs she would start and when. I would try to pay attention as best I could but I was always waiting for a break in the conversation when they would say, “Do you have any questions?”

Will she lose her hair?

Inevitably, she would always end up losing it. It was the worst part of it for her in the end. I remember when her hair started to fall out initially…she was only 2 ½ years old. We took clippers to it in the bathroom and she seemed kind of excited about the change. The lack of hair transformed her to another child. Now she was a sick child and now everywhere we went, people would stop and stare at her. Shaving her head was never a good experience for her after that.

The first time was the easiest, but each time after that was hard. We would try to sit and talk with her about what is going on but I knew that she too was waiting for that break in the conversation so she could ask us.

Will I lose my hair?

When we had longer periods of remission it would grow back. She could occasionally get a little bow in it or rock a headband without people looking twice at her. I found it funny when people would tell me they loved my little girl’s pixie haircut. Little did they know that the pixie haircut took about a year to get. One February it finally reached a length she had been waiting for; Grandma could curl it. It looked ridiculous really, but she was over the moon about having anything that could be styled like a princess. Of course, just a month later the cancer returned all through her body and she would lose it again.

When we were told of that relapse it was her birthday. We had just had a big swimming party for her and she was finally living a normal life. A call in the car from her New York oncologist that asked me point blank, “Is she still able to walk?” I was stunned by this question because just yesterday she was swimming like a fish in the pool. But when someone asks you that question, you know the news coming after it isn’t good. It wasn’t good at all. The cancer was all through her body once again. Just another time that Isabella was probably living a life with intense pain but continued to live with it instead of complaining.

It was after that relapse that we decided; if she is going to lose her hair, she can do whatever she wants with it until the last hair falls out.

“I want to have red hair like Ariel.” So that’s just what we did.

For some reason it always made the news of her hair falling out easier to hear for her. I could tell she was upset, but after the news set in she remembered our deal. Off we would go to the salon and transform her once again. She would sit in the chair beaming from ear to ear. I feel like everyone around was breaking down about the sadness of it all, but not Isabella. It was hard for me to be sad for her in these moments because she was so happy.

I think most people now think of her with her red hair. For the last three years of her life she was either bald, working a 5 o’clock shadow or Ronald McDonald red. Most of the pictures we have of her when she was at her happiest is with red hair. It’s how I picture her in my mind too.

So each September for the race, I come in and go red in her honor. I sit in the chair and squirm a little because it makes me go outside my comfort zone a bit, but in the end it’s just a silly thing I do because I know she would love it. Sometimes we would go red together and walk out of the salon hand in hand like twins. Now it’s just me – going red alone…but I know somewhere she is loving it because she knows I’m doing it for her.

-Isabella’s mommy

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Why Grant Saves Us…

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Day 22 QuoteDay 22
Why Grant saves us…

For years they were frick and frack. They were only 18 months apart so once they could both walk and talk, they were best friends. He grew up knowing her with cancer and knowing that he had to be careful with her. He knew to watch for her line and when Mommy said to give us a minute because we had to change a bandage, he would wait to be held. I can’t tell you how many times we would take him up to the hospital with us to visit her and he would just crawl up in bed with her and watch a movie. She loved to take him down to the snack closet so he could pick out individual fun cereals or a pack or Oreos with milk.

All those times that people made such a fuss over her or all the gifts she received, he never said a word. He was always getting so much attention from my Mom while we were busy with life and death decisions. He patiently waited his turn and knew when I was ready to love on him. He would bring his blanket and crawl up on my lap and suck his thumb. I loved the time I got with him because it was real and genuine and many times it saved me from my own internal struggles that day.

As he got older he began to take care of her too. When she would be laying on the couch, she could ask him to get her a drink, get her blankie, or put a movie in for her…whatever she needed. He never said no to her. So many times he helped me push her in her stroller when she was unable to walk. By the time he was 3 or 4, he was stronger and had her by quite a few pounds so he slowly became the big brother in her life. He could push her in a swing, help her up the stairs and always walked behind her if he was not holding her hand.

He took care of her for so many years. Then one day he stopped.

I would ask him, “Buddy, why don’t you take care of Isabella anymore?” He shot me straight, “She doesn’t need me anymore Mommy. Sophia needs me now.” I can’t help but wonder if he knew at that point that his love was needed for another sister. I’m sure near the end of Isabella’s life, Sophia became a little forgotten and Grant knew that. He was always picking up the lowest hanging fruit in our family.

The last couple weeks of her life, he stayed back a little. He would come in and check on her, asking her quietly if she needed anything. Very few people were allowed in the room near the end. She cut off so many by that time, but Grant was on a short list. He was able to crawl in bed with her and rub her back. By that time, it was nothing more than just bones but he never even flinched. He just ran his hands over the shell that she was and sat quietly with her. I took a picture of that night because it was so mature and loving and amazing. It was such an act of selfless love that he was giving her and a complete comfort she had with him.

He was at a summer camp the morning she died. My mom went and picked him up and brought him in to say goodbye. For the life of me, I can’t imagine what that moment was like for him or how he will be affected by that day forever. He rarely grieves her but when he does it’s the most heartbreaking thing you will ever see. It comes out of nowhere and swallows him whole. I think he has thought about her every single day since she has been gone. I can tell by the Taylor Swift music he listens to at night. She’s an actual real person in his memory and he knows that she died, but he still has trouble understanding it. In my mind this makes his grief harder than all of ours at times.

Today, Grant is the best big brother and son you could ask for. He has this sense about who is the low hanging fruit in our family and he gravitates to helping that person. He puts on songs for me when I lay with him at night and gives me nose kisses on the day that I need it most. For Stuart, he is his friend. He can talk to him about anything and their relationship is so open. He is AMAZING to Sophia and has become her protector. He is her world and I’m excited to know that their relationship is going to become something people will envy in the future. He has even stepped in as the caregiver for our cat, Jake; he was Isabella’s but now sleeps with Grant every night. Yet another tragedy of her death that Grant has picked up.

I know it’s hard to see good from a death. But if you are looking for it, you should look at Grant. He is the most confident, strong, loving and empathic child you will ever meet. Grant is going to do amazing things in his life and I know the majority of them will occur because he lost her. Maybe that is the gift she left for him? She allowed him to take care of her and he let her into his heart. She will always be there inside him in a way that we will never understand. He wants to protect her legacy and he knows all the good we are doing. He is proud to be a Santos and proud to be her brother. Eventually I know he will become the spokesperson for this whole thing, maybe we should let him. Who knows what he will accomplish, but I’m positive it will be more than I could have ever accomplished alone.

-Isabella’s mommy

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