Tag Archive for: neuroblastoma

Her legacy…

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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

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

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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.

He never takes it for granted…

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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.

Forever grateful…

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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.

Forever grateful…

Isabella and Sara

“I met Isabella one week before she was diagnosed at her birthday party. I was introduced to the Santos family through a mutual friend and was drawn to this kid the moment I met her. She had an infectious laugh, the sweetest voice and was a fighter from day one.

I loved just watching her run around playing, singing, taking her and her BFF Soliel to Chuck E Cheese, watching her grow into a young lady, watching her with Grant and Phi, loving on Jake the cat and Bailey the dog. BEING A KID. Just wishing it could all be normal for her.

One thing that I will be grateful for forever… Erin and Stuart allowed me to say goodbye to her. Coming in and seeing her and her worn out body, yet she managed a smile when she saw me. Just sitting there with her while Miss. Chrissy scratched her back. When leaving telling her that I loved her and her saying it back to me in her sweet voice is something that will never be erased from my mind.

10 yrs later, people that never met her love her. It says a lot about who she was. She was one in a million and the reason I do what I do year after year……for her ❤” – Sara Moody, family friend

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

$1,000,000 Goal for MIBG Room at Levines

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WHY THE $1,000,000 GOAL THIS YEAR? We have gotten this question several times. One simple fact… to bring the leading pediatric cancer treatments to local children in our surrounding communities. We have committed to fund the creation of a MIBG room at Levine Children’s Hospital and anticipate breaking ground in 2018.

WHAT DOES THIS MEAN? In just one year, our local children will not only benefit from the new MIBG room, but also trials involving MIBG therapy. With your 2017 donations, ISF was able to fund the Frontline MIBG Therapy project trial through the Children’s Oncology Group (COG). This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. It will be ready for children across the country in August 2018 where an MIBG room is available. Guess who will have an MIBG room?

WHAT IS MIBG? A cutting edge, targeted therapy used to treat relapsed or high-risk neuroblastoma with little to no pain and side effects. This treatment requires a highly specialized team to deliver the therapy and a special room to assure that patients, family, and health care providers are safe.

WHY IS BUILDING A ROOM SO EXPENSIVE? The room is specifically designed for this type of therapy and is created with lead shielding due to the radioactive nature of the treatment. These lead walls provide the highest level of protection for patients and families. The MIBG room will have an adjoining suite so the patient will always be close to their family.