Tag Archive for: neuroblastoma 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.

Just one more minute to tell her how grateful I am…

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.

Just one more minute to tell her how grateful I am…

Isabella and Daddy

I wish I could say I love Father’s Day. For me, it’s simply a tough time of year. Heck, let me put it blunt… a shitty month overall.  As fast as it comes every year, I wish it would just be over with. God how I wish I could just push this dark cloud away and enjoy this time of the year. But I can’t. So many of my last memories with Isabella took place over this holiday time period. I can recall every minute of opening her last gifts to me, both at home and at Red Lobster, the last time we ever went out – her favorite restaurant in the world and she couldn’t even enjoy it. Not to mention, the endless hours of lightly scratching her back as my arm cramped up and yes, I kept on doing it no matter how much my arm hurt. What else could I do my baby girl was dying, right there in front of me.

For the sake of Sophia, Grant, (and Erin), I’ll bury it on Father’s Day. I’ll get excited when they celebrate the day, shower me with hugs and homemade surprise gifts. Oh yeah, I’ll play the part. They all deserve it. I know they love me dearly and I know I couldn’t have moved on without their love. The kids continue to love me in such unique ways. Grant is so confident and funny. He truly cracks me up on a daily basis, and I have this deep belief that we will be best friends forever. And Sophia, oh lordy, she has been my rock. She fills up my love bucket like no other. She’s hugged and kissed me through my hardest times. Not sure I’ll ever let her move out. But obviously, someone is still missing. I’m told to focus on who’s here and be appreciative but on Fathers Day, I just wish I could have one more minute with her. To tell her how grateful I am – and always be – to be her daddy.  How much I miss her hugs, laughs, her voice and her love. She made me a better person and being her dad, and with Grant’s and Phia was my greatest gift.  She taught me how to be a dad, or maybe more truthfully, she broke me in. Our memories together are not any better than others I have or will experience as a father… they were just ‘my first firsts’. Grant gets some of the firsts now, but for me, those initial 7 years were really the wonderful learning experiences and I’m changed forever.  Those will always remain my greatest father day gifts.

I know there is part of me that has changed. I am and will be slightly broken forever, but I wouldn’t take back a minute that we spent together. Not one minute of pain if it meant I would have to give one minute of happy time together. I love you each so very very much and hope to have many, more Fatherly moments together.   Love you always, daddy.”  – Isabella, Grant and Sophia’s Daddy

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

She was the love of his life…

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.

She was the love of his life..

Isabella and Daddy

“Even in the end, he did all the things I couldn’t do. He chose where to take her to be cremated because I could not know where that building was located in Charlotte. He picked out the beautiful gold box she was placed in, he paid for her final resting place, he spoke with the pastor, he bathed her after she died and carried her out of our house. There are things I was not strong enough to do, but he was. He didn’t think twice about doing them because for him, it was just more ways he showed his love for her.

He hasn’t been the same since she has left us. I don’t think he has ever experienced true love like that in his life. She loved him unconditionally and he has never loved someone as much as he loved her, including me. What they had was unique and every daughter should be so lucky to have a father love her the way that he did. He would of done anything to save her and she was the love of his life.” -Isabella’s Mommy

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

He never takes it for granted…

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.

He never takes it for granted…

Sophia, Grant, Isabella and Daddy

“Father’s Day is tough. I try my hardest to make the day special for Stuart. I know for me, Mother’s Day is hard and can at times be painful. I hate to have him experience the same pain. I always try to ask him what he wants to do but he answers don’t consist of much other than breakfast with the family. We do cards and gifts to tell Stuart how much we appreciate him… but it never feels like enough.

Just last night as the two of us sat at dinner alone, I asked him if he wanted to write something about Father’s Day. It’s a weird post for me to write because I’m sure I could never communicate what he is thinking. But Stuart is a talker, not a writer. He could talk for an hour about what he is feeling about Father’s Day, but cranking something out on paper just doesn’t happen easily for him.

The interesting thing he said that resonated with me was how he felt like Father’s Day is all about thanking your Father for all they do. But in fact, he doesn’t want to be thanked. Just the opposite really, he wants to say Thank you to all of us for the gift of being a Father. He said how thankful he was to be a Daddy to our kids and that is what this day means to him. It’s the best thing he has done with his life.

My kids are very lucky to have someone who considers his role a true gift and he never takes it for granted. I’m confident that our kids will always be amazing people because of Stuart’s role in their lives. You can always see the love my kids have for him in their eyes. He means the world to them all.” -Isabella’s Mommy

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