Donations At Work: Update on Project:EveryChild

Your donations at work! We love when we can share ISF funded trials or program updates. In 2016, ISF awarded Project:EveryChild with $25,000 where every type of childhood cancer, no matter how rare, will be studied by more than 200+ pediatric cancer programs of The Children’s Oncology Group, as they lead the way towards better cures.
 
With the help of ISF funds, Project:Every Child has completed the following:
 
– Project:EveryChild opened at 205 member institutions across 5 countries
 
– Combined enrollment a total of 5,916 children on to the protocol.
 
– COG Biorepository at Nationwide Children’s Hospital has collected and bio-banked nearly 20,000 biospecimens which will be made available for future translational research efforts.
 
– Expected cumulative enrollment total to reach 7,000 by the end of 2017 and then somewhere in the range of 11,000 – 12,000 by the end of 2018.
 
– Protocol amendment approved by the National Cancer Institute: COG member institutions are now implementing all of Project:EveryChild’s initially envisioned components, including the collection of patient circulating tumor DNA (ctDNA) and parental DNA samples. The collection of ctDNA is especially impactful, as it has both immediate and downstream benefits that will significantly impact how all children with cancer are treated.
 
This research capability, coupled with parental DNA collection via blood and saliva samples, will have a profound impact on our understanding of the genomic changes that arise in tumors, as well our knowledge of risk factors that increase the chances of developing childhood cancer.
 
Thank you for continuing to fight cancer in Isabella’s honor. We couldn’t have helped fund this project without you!

Levine Children’s Hospital: We’re Doing All We Can to End Childhood Cancer

Content provided by Levine Children’s Hospital

Today, the 5-year survival rate for those with childhood cancers stands at more than 80 percent – up more than 20 points since the 1970s.

That’s encouraging news for families with children with cancer. But there’s still a long way to go, especially when funding for pediatric cancer remains low.

Here at Levine Children’s Hospital, we’re doing all we can to cure the incurable. We sat down with some of the cancer specialists at LCH to hear what excites them about cancer care here in the greater Charlotte area.

Personalized medicine. As part of the Beat Childhood Cancer initiative, LCH researchers are investigating tailored courses of chemotherapy based on a person’s individual genetic makeup. “We give you a personal answer, telling you what drugs may work for a specific tumor. For people who have gone through chemotherapy, that is a very unique thing,” says Javier Oesterheld, MD, medical director for pediatric hematology, oncology, and blood and marrow transplantation.

New technology for rare nerve cancer. LCH is building a dedicated lead-lined room to deliver a special kind of therapy called MIBG to treat neuroblastoma, a form of high-risk nerve cancer. We’ll be one of fewer than 20 centers in the United States to offer this type of therapy, says Dr. Oesterheld.

Dynamic approaches for blood and marrow transplantation. Replacing broken stem cells with healthy cells from a donor is one way to cure many types of cancer. We’re one of 12 institutions in the country studying a new technology that can help kids with cancer who have no other donors. “We have a number of kids who we’re helping save with this  technology, and we’re really privileged to be able to bring this top-level work here to Charlotte,” says Jeffrey Huo, MD, pediatric blood and marrow transplantation specialist.

Immunotherapies. Many new treatments for leukemia involve helping the body itself to fight off the cancerous cells. “We’re now able to trick the body’s own immune system into recognizing the leukemia cells as bad, so it can go and kill those cells,” says Joel Kaplan, MD, a pediatric hematologist-oncologist. “This type of research is one of the most cutting-edge things going on in the nation right now, and we’re contributing to those efforts here at LCH.”

Beyond new therapies, our doctors know that better treatment also includes providing the extra human touch – to be at our best when children are at their worst. “The science of cancer is always changing, which keeps us on our toes,” says Dr. Oesterheld. “But the idea of being able to get a child through probably the worst times of their lives – for us, that’s invaluable.”

Fighting a Disease

Jackson, 2016 Charlotte Half Marathon

Written by Tammy Lowry, Jackson’s Mom
 ____
At the age of 12, my son Jackson Lowry decided to join the Isabella Santos Foundation Dream Team.  The Dream Team trains together as a group to run a half marathon, supporting each other and raising funds for ISF and pediatric cancer.  November 2016 was his first half marathon, and he did a phenomenal job.  He politely reminds me every day that he beat me, and he is going to beat me again this year.  His motivation might be to beat his mother in a half marathon, but the biggest joy I embrace is how he is learning about fundraising and supporting our community when there are kids a little less fortunate.  But then something happens that reminds me – – he knows what that is like.  He knows how it is to fight a disease.  He has Type 1 Diabetes, and it haunts us when we least expect it.
 XXXX
Last Saturday was a critical part of our half marathon training.  We were meeting for a group run that is 10 miles of the actual race course.  Unfortunately, Jackson had a cross country meet that morning with his middle school – so we both did not attend the group run.   Instead, we got up on Sunday and hit the streets at 7:45am to accomplish this run together.  There is a part of the half marathon course that is a huge hill on Providence Road.  Jackson and I both agreed that once we run that, we are golden.
 XXX
We start off with our run, and he is in high spirits.  He is directing me which route to go, which streets to run on.  He was so pumped.  We pull that hill on Providence Road and when we reached the top he started to slow down.  Now he fell behind me in pace.  We were only at 3 miles – – we had a long ways to go.  I kept looking back at him to see what was going on, and I looped back around.  His blood sugar dropped significantly and he was having a diabetic attack.  I pulled out a bag of energy beans because that is all I had on me at the time.  He ate the entire bag and felt better immediately.  But when you deal with blood sugar highs and lows – it affects your attitude, your mood, and your motivation.  He lost all motivation after his attack.
 XXX
As he looked at me completely wiped out, he told me to go ahead and run.  I was hesitant at first.  I ran ahead of him and I would circle back around to see how he was doing.  Then I finally kept on running but talked to him on the phone as I completed my 10 miles.  He walked it behind me, but he kept going.
 XXX
The entire time I thought – – what is he going to say to me when we meet back at my car?  Will he be defeated?  Will he be upset?  How do I handle this as his mom?  I certainly know that you have good runs and bad runs, but will he understand that?  He is only 13 years old.
 XXX
We get back to the car and he looks at me and says, “I will get it next time.”  Yes you will Jackson, yes you will.  This weekend, we have an 8 mile run, and I know he will do it.  His heart is full of motivation and he won’t quit.
– Tammy Lowry, Jackson’s Mom

Brighthouse Financial Supporting Charlotte Charity With Childhood Cancer Mission

Thank you to Brighthouse Financial for being an incredible partner to our foundation and continuing your Presenting Sponsorship status or our 10th Annual 5k/10k and 1 mile fun run for Kids Cancer for the second year!  We have been so thankful for the commitment and dedication this company has given to supporting the Isabella Santos Foundation and helping us make a difference for kids fighting cancer.  We simply could not do what we do without the community support behind our foundation.

“In January 2016, MetLife announced plans to pursue the separation of a substantial portion of its U.S Retail segment through a public offering of shares, a spin-off, or a sale.  The separation would allow MetLife to focus on businesses that have lower capital requirements and greater cash generation potential.  As an independent company, U.S Retail would benefit from greater focus, more flexibility in products and operations, and a reduced capital and compliance burden.

MetLife employees, 2016 ISF Race

This past June, the new company, named Brighthouse Financial, received regulatory and board of director approval to disaffiliate through a spin-off on August 4, and began trading on the Nasdaq Stock Market on August 7.

Brighthouse Financial is on a mission to help people achieve financial security.  Our world is changing every day; a company pension is the exception, not the rule, and reaching your 90th birthday isn’t unusual.  In these uncertain times, preparing for your retirement has never been so important.  We specialize in annuities and life insurance; two essential products that help protect what you’ve earned and ensure it lasts.  They work in tandem with the rest of your portfolio.

MeLife and Brighthouse Financial have a longstanding partnership with the Isabella Santos Foundation (ISF).  We have participated in the Isabella Santos Foundation Race each year since we moved to Charlotte in 2013, and 2017 marks our second year as Presenting Sponsor.  We also hosted an internship consulting project with ISF in the summer of 2016 and are excited to have raised over $50,000 for ISF through our Annual Community Golf Classic which benefited ISF in 2015 and 2017.”  – Apryl Silva, Real Estate & Community Relations

Ports, bald head and scars…

“This picture that was taken of Isabella always makes me smile. We had just moved back to Charlotte from New York City in the fall after a brain relapse that sent us into a tailspin. The mass on her brain forced emergency surgery, followed by a chemo and radiation regiment that meant moving our whole family for 4 months to the city. If you look closely, you will see the port that was placed just under her skin on top of her head. This port was connected to veins in her central nervous system so a drug called 8H9 could bathe her entire brain and spinal cord with a life saving treatment. (This 8H9 drug developed by Dr. Kim Kramer at Memorial Sloan Kettering Cancer Center has since received national recognition as one of leading new drugs for relapsed neuroblastoma.) In this picture Isabella has yet to receive her first dose of 8H9, but the relapse that once frightened us to our core had 4 months of treatment under its belt and was doing amazingly well. This port would be used in just a couple of months while Isabella was in remission to kill any microscopic cells that may still remain. I was there for a test treatment and was blown away as she calmly sat in her hospital bed while Dr. Kramer inserted a needle into the port and sent fluid through her CNS to ensure the port was working correctly. She looked at me with wide eyes as I sat next to her holding her hand. After 15 minutes of treatment, the needle was removed and she went about playing per usual as if nothing had happened. She would receive 3 of these treatments in the next couple of months but we decided as a family to remove me from the treatment due to possible radiation exposure. My Mom of course stepped in exposed herself, selfless as always. We wanted to have another baby and felt like it was safer for me to be away. I got pregnant that January.
 
That little port never bothered her as you can tell from this smile. As a parent your eye always caught it, but you knew it was imperative to her survival. The port stayed with her the rest of her life. I always wished they had taken it out, but like her bald head and scars… it just became part of who she was. We took her lead and just became happy to have every day with her – who cared about that port? She sure didn’t.” -Isabella’s Mommy
 
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