Tag Archive for: childhood cancer research

If You Build It, They Will Come

Families are traveling to Charlotte from around the globe to receive care from the pediatric cancer program at Levine Children’s.

Team Purple Cancer Eaters Rare Pediatric Cancer Campaign: DIPG

Isabella Santos Foundation Intern teams were challenged with creating a 7 day social media rare pediatric campaign to help raise awareness.

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!

He wasn’t there in the beginning or the end…

Written by Erin Santos, Isabella’s Mommy

It’s been a long 5 years but relationships are growing and changing at Levine Children’s Hospital.  I’ve gone from admiration and love, to fear and anxiety and then back again with these doctors.  The walls and people that once crippled me upon entering after Isabella’s death have become a second home to me.  I know I can joke a lot about how a large donation commitment can buy you a hospital friendship, but it’s become much more than that.  I feel like I have become so much stronger around them.  Just a few years ago, I could barely stand without my knees buckling when I knew Dr. Kaplan was going to be at an ISF event.  Then, this past July – I find myself in the oncology clinic helping give gifts to the kids for our Christmas in July event.  I feel  him coming down the hall before I even see him, just like it used to be –  and my heart still stops for a minute.  We exchange pleasantries and hugs – like you do with an old boyfriend who you run into at a Starbucks years later.  It’s uncomfortable because there was history… but it’s becoming more comfortable because there IS history.  Not sure if I can ever feel totally comfortable around him – but I’m trying really hard.

Luckily, my new contact at Levine isn’t my old boyfriend Dr. Kaplan  🙂  As I sat in the “Green Room” of the NBC Charlotte news studio this week for over an hour with Dr. Javier Osterheld (one of Isabella’s past oncologists), I found myself comfortable and enjoying the company. We were together to talk on air about the MIBG treatment room ISF is funding at Levine’s.  We talked about all things cancer, the hospital, family, beer and other things that might be tad inappropriate.  I found myself laughing and enjoying the company of a man who I wasn’t the biggest fan of several years ago.  Cancer can make you love and hate people all in the same week.  He is easier for me because we don’t have the 5 year history that I had with Kaplan.  He wasn’t there in the beginning or the end.

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We talked about his training with Isabella’s Dream Team and I asked him how many half-marathons he had done in the past.  His answer… “This is my first.  And I’m doing it for you and Isabella.”  Maybe he was bullied into doing it at first, but maybe he’s just really an amazing guy and we lose that vision of these doctors when they give us horrible news about our children.  It brought me back to my ‘Why I loved Him’ blog post  about how you go through these feelings of total admiration for these people because your child’s life is in their hands.  You put this God-like complex on them and they don’t ask for that.  In the end, they really are just normal people who like you have jobs they love and are just trying to save the life of kids.  But they are also people who drink beer, and make fun of themselves and laugh and cuss… just like you.
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I find that through Isabella’s death, new things come to life, like friendships with people you once hated that were really only trying to save her.  I can see them all more clearly now – and they are all amazing people.

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