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.

There is nothing better than summer camp…

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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.

There is nothing better than summer camp…

Isabella at Camp CARE, 2011

“Today we drop off Grant and Sophia for a week of overnight camp.

Grant is a 3 year veteran who pretty much threw stuff together in a big ball and was ready to walk out the door.  Un-phased per usual on leaving the nest or putting thought into preparation.  He has the confidence to meet new kids, spend time with old friends and live an independent life all week long.

This is Sophia’s first year at the tender age of 7.  She is exactly like Isabella as she packs neatly and stacks them just so as she crosses items off the list.  Each piece carefully thought through for every situation.  Her room is cleaned and all of her stuffed animals are tucked neatly in her bed.  She is of course worried about Jake the cat getting enough love while she was gone.  Her heart is bigger than anyone I have ever met.  The amount of hugs and kisses we will get will climb near 100 before we drop her.  Her excitement is building to spend a whole week with her best friend Anna, hoping they will bunk together with their flashlights under the covers, giggling as they trade stories.  It’s so precious to watch.

Isabella’s journey has given us two kids that have no fear of the unknown, new people or independence.  There will be no tears, just the thrill of the week ahead.  It’s a great thing as parents to watch.

Isabella at Camp CARE, 2011

Isabella was able to enjoy a week of sleep-over camp thanks to Camp CARE in 2011.  She mirrored Sophia, as they always seem to do.  No fear, just excitement and the planning was very detailed.  Stuart and I were so nervous sending her that year, but she was in such good hands.  We loved that for a week in the summer she lived like a normal, healthy child and had the memories of camp to hold on to.  No tears, just happiness.

Grant heads to Camp CARE next week, Isabella’s stomping grounds, to be with kids who are battling and siblings who of those lost their battle.  It’s a grounding experience for him each year and I hope that he can feel Isabella’s presence there, wishing she was there alongside him.”

-Isabella’s Mommy (June 11, 2017)

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

She should of been there…

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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.

She should of been there…

“There are some things I just can’t do. Today is one of them. Her kindergarten class at Marvin Elementary school celebrated the new exciting frontier ahead of them that is Middle School. It’s crazy for me to think that I’m old enough to have a middle schooler. Especially with all the money I pay not to look like I do. I’ve watched them all from a distance over the last couple of years, wondering which group she would of been in. I must say, I even miss the drama that would of ensued with her friends and the talk of boys in my backseat. I skipped through all the heartache, pain and joy of having her in her last year of elementary school. I knew the class was going to be taking a minute during the ceremony today to remember her and both a financial and sentimental dedication would follow. I know the right thing to do would to have been there, and smile when they put her picture up on the screen. But I know in my heart I would have been scanning the room. Wondering if these kids are really touched by the loss still, or if the parents are feeling a little more grateful today when they see their son or daughter’s name being called out. Grateful they are not me. I appreciate her being remembered today but honestly, it’s a day I want to forget. Another milestone, stolen from us because we drew the short straw on life. She should of been there.” Isabella’s Mommy (Today, June 8, 2017)

Today, Isabella should have graduated from 5th grade. The impact she has left on her classmates and everyone around her holds strong… as evidenced today by the dedication her 5th grade class made to her. Yes, Isabella should have been there celebrating with all her friends. But her spirit and legacy is incredibly inspiring… and we thank Marvin Elementary (Union County, NC), her teachers and friends for honoring her to ensure she is never forgotten. Along with the dedication, the 2017 fifth grade class families organized a financial donation presented to ISF. We can’t put into words what this means to not only Isabella’s family…. but her foundation. A plaque remembering her will hang in the hallways among the hand-painted tiles that all of the 5th graders completed as their legacy class gift.

Forever a Marvin Mustang.

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

How unfair her life has been, but how beautiful it has been as well…

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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.

How unfair her life has been, but how beautiful it has been as well…

“But as I laid her in my bed tonight, I knew that hospice was right.  She is trying for the last time to live.. but her body will soon lose the fight.  I feel like I’m coming to peace a bit with the fact that we are going to lose her soon.  The community of people supporting us doubles daily and her reach is growing nationwide.  It seems fitting for her as Isabella always thought that she was a celebrity her whole life, but just wasn’t sure why.  That point was made very clear today when my phone rang with a blocked number.. Taylor Swift​ was on the other side of my phone and she had heard of Isabella and her fight.  Isabella is a huge fan of hers and a month ago, she would of screamed bloody murder to hear her on the other side of the phone.  But, this disease is taking all the of things about Isabella that made her so wonderful.  It was all she could handle to just lay on the couch and listen to this woman she loves speak to her through the phone.  She could barely speak, she just looked at the phone with one eye closed as if she was trying to see Taylor in the phone somehow.  If you could of seen Isabella at her concert a couple of months ago, it would take your breathe away to see her now.  How just a couple of months and a horrible disease can steal more and more things from her every day.  Makes me so sad to see it.  Even the revolving door of loved ones who leave and I know they are thinking it is the last time they will ever see her.  This is my day.. my heartbreak, Isabella’s heartbreak, and heartbreak from everyone we come in contact with.  I can only think that through her life, so many are changed that it will make the difference.. maybe even save another child’s life.  Isn’t that what we all want?  Our life sacrifice. knowing it can save someone else’s?  That is an amazing gift.  One death for the sake of millions?  I know that is what Isabella would want in the end.  To know that because of her, another little girl will not have to miss her last day of kindergarten.  I selfishly wish that my daughter was the one being sparred.  That her last day of kindergarten tomorrow would be filled with laughing and running and playing.  Instead we head to the clinic for a full day of blood and platelets.  Another memory, stolen.  How unfair her life has been, but how beautiful it has been as well.”  -Isabella’s Mommy (June 7, 2012)

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

Wait until they become dragonflies…

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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.

Wait until they become dragonflies…

“We are doing horrible things like talking to hospice about funeral homes, what to do if she dies in Disney, how to talk to our kids.. But I’m also getting moments last night where Isabella and I took a bath together and I washed her up and talked about all kinds of things like what animal we would like to be… she of course would be a bunny. I got her outand dried her hair and we cuddled on the couch. Hospice suggested a book called Dragonflies and Waterbugs to help talk about death to children. It’s a great book about this family of waterbugs who will occasionally crawl up a stem and not come back… even though they seemed very happy in their waterbug family. They made a pact that the next person that goes will promise to come back and tell what is up there. But when the next bug goes up the stem, she turns into a beautiful dragonfly. She loves to fly around and can see the waterbugs below. But when she tries to return, she can’t get through the water. Instead she will have to wait until someone else in her waterbug family decides to join her as a dragonfly so they can fly around together. I’ve only read Isabella and Grant the book but will use it as an example when the time comes.” – Isabella’s Mommy (June 3, 2012)

We bought a bulk stack of the Dragonflies and Waterbugs book and gave them to all of Isabella’s sweet friends and family to help everyone discuss her death. So now every time you see a dragonfly… don’t brush it away . It could be Isabella wanting to say hi.

Dragonflies and Waterbugs book: http://amzn.to/2s6Uu4F

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