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

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.

Why $1,000,000?

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.

 

Wait until they become dragonflies…

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.

ISF Funds Frontline MIBG Therapy with the Children’s Oncology Group

In this picture is Isabella in MIBG therapy at CHOPT in Philadelphia. Isabella not only received this as a end of life treatment instead of a frontline therapy… she had to travel away from her home and family to receive it. This will be a game changer for kids fighting.

In 2016, funded a Frontline MIBG Therapy project with the Children’s Oncology Group (COG). The purpose of this project was to determine the effectiveness of pulling MIBG therapy, which was traditionally used as an end of life treatment, to the frontline of therapy for children with high-risk Neuroblastoma. We are excited to announce, thanks to your donations – this trial is ready for children across the country. Starting in August of 2018, the COG will start the process of enrolling over 800 children with high-risk Neuroblastoma and will enroll children over the next 3 years. Tomorrow night, Dr. Peter Adamson, Chair of the Children’s Oncology Group, will be with us here is Charlotte to speak at a private event about the advancement of the program. Can’t wait to share more updates.

This is great news for Charlotte because as you know, ISF has agreed to fund the creation of a MIBG at Levine Children’s Hospital! We are inching towards our goal of $1 MILLION DOLLARS and anticipate breaking ground in 2018. What this means is that in just one year, our local children will benefit from a trial that YOU supported in a room that YOU built. This trial hopes to reduce the number of children who relapse and reduce the burden of late effects of therapy. Amazing.

This is due to your support. So thank you. Children of Charlotte thank you.

We were so proud to have been able to donate a total of $175,000 to the COG through three of their children’s cancer trials and programs.  Learn more about the programs YOU helped us fund through the COG.

First Quarter Fundraising Update

We are excited to announce that The Isabella Santos Foundation has raised $260,000 in the 1st quarter of 2017. We have set a goal of raising ONE MILLION DOLLARS in 2017 for our 10th anniversary.  Your support will help us get our message of hope to more people than ever before and generate much needed research and treatment options to eradicate childhood cancers.
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It’s amazing to look back on where we were 6 years ago before Isabella passed away…   “I’m proud of our team and what we have done. Not only do we have the uphill battle every day but we do it in our own style and manage to keep it together the best we can. Not to mention the fact that while running uphill we have managed to raise close to $150,000 for various charities, mainly Neuroblastoma research. My mom and I were talking recently and my mom was saying how hard it is for her to understand all the good that Isabella brings to other people’s lives but how she has to suffer in the process. I’ve always struggled with this as well as I watch other children get to do all the “normal” things of childhood while she is hooked up to toxic treatments. But after thinking about it, I think of all the people in history that have suffered. But through their suffering, it brought something good. Maybe she is just one of those people in our lives that takes the bullet to make us all better people. Or maybe her suffering will help raise awareness and funds that will one day CURE all children. Who knows.” – Isabella’s Mommy, 2011
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Thank you to everyone for their passion and support.  It’s pretty darn incredible how far we have come.  We can accomplish so much if we fight cancer together.