Tag Archive for: neuroblastoma

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.

Isabella’s Cooking Show

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Written by Connie Stewart, Isabella’s Grandma

Let me start off by saying that my mom is an amazing baker.  She is known for her German chocolate cake, coconut cream pie and brownies with homemade icing.  My daughter Amy is known for her many varieties of cookies and creative cakes and I dabble in baking a bit with cake pops and strawberry cakes.  If you know Erin, you know that she was more than happy to step aside and pass this trait on to Isabella.  She didn’t like the mess it created and would much rather pull out a roll of cookie dough from the refrigerator and have warm cookies in 15 minutes with no mess.  Erin would get out the mixer, point to the flour and sugar and say “There you go”.  But Isabella loved to bake and I was very happy to help her.  And I do mean, help her.  She was always in charge and I was the one getting the eggs, flour and various ingredients.  She would handle everything from there.

As far back as I can remember, she would pull up a little step stool and put on an apron and do whatever she could to bake something.  One christmas when she was maybe 5 years old, we got her an apron with her name embroidered on it and a baking set with measuring cups, measuring spoons and bowls.  The was so excited to break it open and begin cooking.  I think she actually fixed scrambled eggs for breakfast for us that morning with a little instruction from her dad.

But her favorite things to make were cookies, cupcakes and cakes.  One Easter weekend, Isabella and I spent the entire afternoon baking, icing and decorating a bunny cake complete with jelly beans and sprinkles.  She was so proud of it.  Later that night, her Uncle Nathan came over and when she offered him a piece he took a big piece of the bunny butt.  She couldn’t stop giggling about that and her infectious laugh made us all laugh too.

I think my favorite memory of her cooking skills came in 2011 when all of us were together for an ISF Face.  Another one of Isabella’s favorite things was spending time with her cousins.  Amy’s three girls were close to her age and she love just running with them and giggling.  One this particular day, the four of them spent hours planning a cooking show.  Actually, it was not just a cooking show it was “The Isabella Cooking Show”.  They decided to hold the show in the garage on the pink stage that her dad had built.  They designed a sign, wrote out a menu, and set up the stage and chairs for the audience complete with a microphone.  Everyone on stage had to wear a cupcake t-shirt and the color theme was, of course, pink.  They made blueberry muffins and explained the process which took an entire two minutes.  Isabella took center stage and stirred the batter over and over and over.  They had not quite planned what to do next so they passed around a microphone and took questions from the audience ranging from “How long do these muffins bake” to “Can Sophia help you?” which met with a resounding “NO!”.

One thing about Isabella and her baking was that she never wanted to eat the things that she made.  I don’t know if she didn’t care of the things that she baked or that she knew something I didn’t about what went into it.  Mmmmm… Either way, I loved the time that we shared doing this.  It was a time for the two of us to just talk and laugh.  She would tell me about things that went on at school, her boyfriend, Joey, or how her brother and sister were annoying her.  I would tell her about her cousins or ask her about some of the places she had been all while we continued mixing and measuring.  I know that she didn’t get it at the time, but for me, this was perfect.  It was my chance to share something my mom, my daughters and now my granddaughter enjoyed.

I know this year the Easter Bunny brought Sophia some baking supplies.  Hopefully I will get some ‘banking time’ with her too.

 

ISF Funds The SADA Drug Delivery Platform with Memorial Sloan Kettering Cancer Center

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Erin and Sophia Santos, Dr. Cheung & the MSKCC Neuroblastoma team

Memorial Sloan Kettering Cancer Center in NYC is one of the top Neuroblastoma research facilities in the country.   Dr. Cheung, head of the neuroblastoma program, and his team are doing remarkable things. In December of 2016, Isabella Santos Foundation gave $202,000 to Dr. Cheung’s team to help push a research program, The SADA drug delivery platform, forward.  We thank you for allowing us to choose these programs that will help move the needle forward on something we feel is really important and a step in the right direction for research and treatment.

One of the difficulties with previous cancer therapeutics has been the inability to control off-target effects.  Children may have the possibility to beat neuroblastoma, but then die from unintended long term side-effects caused from the traditional chemotherapies that affect all parts of the body.  The SADA drug delivery platform was created to control drug delivery with such precision that toxicity only occurs where the drug is picked up by tumor cells, and not to normal bone marrow, the immune system, kidney or other vital organs.  This  novel technology has the potential to completely change the way we deliver strong medicines needed for children, where off-target effects could be devastating with long term consequences.

Isabella Santos Foundation is funding the construction of the proteins that target the tumor cells, and the testing of these proteins in the fight against neuroblastoma.  If successful, this will not only make treatments safer and more effective for neuroblastoma, but can be transferred to use in all cancers.  

Isabella was treated at Memorial Sloan Kettering and we have seen the remarkable programs Dr. Cheung and his team have worked on.  Isabella ran out of treatment options.  She died because her cancer has very little funding.  We continue to work to change that.

Dr. Cheung

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

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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

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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.
Click here to learn more about donating to the Isabella Santos Foundation.