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Through My Eyes: Week 1 Results

Kellie took over our Instagram feed and stories on 9/5/19 to share Brinn’s cancer story and give you a ‘day in the life’ view of their day. It’s real and it’s raw… this is childhood cancer.

We shared several perspectives last week as part of our Through Your Eyes: This is Childhood Cancer Awareness Campaign.  We loved seeing the engagement, the comments, the likes, the shares and the donations. Each perspective is so different and gives us another viewpoint of the realities of what this awful disease is doing to our future and their loved ones.  It’s a month-long series to help make you aware, we have plenty more to share.

Week 1 results:  $11,525 was donated and 73,315 people were reached on social.  Thank you to those who donated and who shared.  We are asking a lot this month, we know.  But as Erin said… “Sometimes your child’s life hangs in the balance of whether or not someone out there is going to do something for your child.”  So we are doing something about it.

In case you missed any from the 1st week:

9/2: We Have Stopped Making You Aware

9/3: Through My Eyes: This is Childhood Cancer 

9/3: Through My Eyes: What Cancer Leaves Behind

9/4: Through My Eyes: Day In the Life Of Kellie Andrew, Warrior Mom Fighting to Save Her Child From Neuroblastoma

9/5: Through My Eyes: Behind the Scenes with Aaron Plummer, Dad to RhabdomyosarcomaWarrior

9/6: Through My Eyes: What My Child About Cancer, What Really Scares This Cancer Mom

This Week Look For…

➡️ Monday:  Behind the Mind of a Teen Fighting Cancer & Social Anxiety Disorder

➡️ Wednesday: What It’s Like  to be a Young Adult Fighting Cancer

➡️ Friday: What it’s Like to be a Young Adult supporting a Loved One With Cancer

Other Ways to Take Action This Month

➡️ Become an Awareness Ambassador

➡️ Register for the ISF Race, 9/28: 5kforkidscancer.com

Thank you for your time, all the comments to these families, content shared and dollars donated.  We appreciate the action taken and hope to inspire more.

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On the Rebound: Cancer Can’t Keep Alex Sidelined

By Levine Children’s, 2018 ISF Sustaining Sponsor

Alex Brogran, Levine Children’s Bone Cancer Patient

Basketball was everything to 11-year-old Alex Bogran – until a sudden leg injury left him sidelined last year. When Alex’s doctors couldn’t find a break or fracture to explain his worsening pain, they called for an MRI.

The results of the MRI were grim: Alex didn’t have an injury – he had osteosarcoma, a type of bone cancer. “It was scary, but I knew everything was going to be okay,” Alex recalls of the diagnosis. “Everything works out in the end.”

For Alex, treatment would be far from easy. It required months of chemotherapy, plus a major surgery to remove the tumor and replace his knee. But his positive attitude never waned, making one thing clear: Treating cancer is tough, but Alex Bogran is tougher.

The full-court press of cancer treatment

Alex’s treatment required top specialists in oncology and orthopedics, and Levine Children’s Hospital was just the place for him to get all the cancer care he needed. “We’ve got some of the best in the country here, so it’s pretty incredible,” says Javier Oesterheld, MD, a pediatric hematologist and oncologist at Levine Children’s.

The first stage of Alex’s treatment was chemotherapy, which is hard for anyone, but it’s especially difficult for kids and their families. 

Knowing that, Alex’s care team put an idea into action: They devised a backpack that lets patients like Alex complete almost all of their chemo treatments at home. “I think that really changed things for him, to be honest. You saw a new Alex,” says Dr. Oesterheld. “You saw a much brighter, happier kid. That’s really the reason why we offer it.”

For the things that still required him to go to the hospital – like his surgery – Alex’s care team did everything they could to make his time at LCH as comfortable as possible. “It was hard, but they really helped me through it. I look at the positive thanks to them,” Alex says. 

A slam dunk for a more normal life

Since his knee replacement surgery, Alex has hit a lot of milestones. But there’s one milestone that surpasses them all: In February of 2018, Alex celebrated his last round of chemotherapy. 

These days, Alex is in physical therapy, where he’s learning to walk again. And one day, he’ll re-learn to jump, so he can get back on the court doing what he loves most.

Alex will continue to see his Levine Children’s care team frequently, to make sure the cancer isn’t coming back, but he’s well on the rebound. And through it all, Alex’s positive attitude has persevered, as has his never-failing belief that everything always works out in the end. 

Levine Children’s Hospital is part of Levine Children’s, a network of care for kids that includes hospital programs, as well as neighborhood pediatric offices and urgent cares. Year after year, LCH is named one of the nation’s top children’s hospitals by U.S. News & World Report for their life-changing care in more than 30 specialties.

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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Why We Haven’t Touched It

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 10
Why we haven’t touched it…

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She barely lived in it. It’s been vacant for 3 years now. I remember her helping paint the walls pink and purple stripes. The rollers were so big she could barely hold them up. She got her new white furniture with a side table, dresser and desk for all that homework that she had planned to do. Truth is, I can barely remember her sleeping in there. So many times she would end up in our bed due to sickness or if Stuart was traveling, not to mention all the nights in the hospital. If she slept in there one hundred nights I would be surprised.
But the room is all her. Her pajamas are still in the drawers, her dresses still hang in the closet and her shoes are still waiting to be worn. Her dresser is covered with pictures of her best friends, her family and “get well soon” cards from classmates. The bookshelves have her library books that I’m sure the Elementary school as decided not to ask for. Her desk is filled with drawings and notes that were never finished. There are beaded necklaces that we made in the hospital, seashells she collected, diaries with kittens on them and Taylor Swift CDs in every drawer you open. I have still not gone through it all because I’m always afraid of what I will find. Last year I found a Mother’s Day craft she made me at school just a month before she died that she never gave to me. That is when I just decided to close things up for awhile.


There are books out there for everything these days when it deals with children. “What to expect when you are expecting” was supposed to be the roadmap for pregnancy to follow. Where is the book on “What to expect when you aren’t expecting?” Where is the manual for parents on how to deal with things like this? I need a roadmap and here are some things I need to know…


1. What do I do with her clothes and when do I start to actually do something with them? Do I make her clothes into blankets and give them to people? Is that creepy?
2. What do I keep and what is junk? Do I keep everything that she ever wrote on? If I throw it away will I regret I did that?
3. How long do I keep this room going like this? Am I supposed to have a little girl’s twin bed in there forever?
4. If I make her room something else, what do I do with it? If I make it into another guest bedroom will people be wigged out sleeping in there? Feels even more disrespectful to make it into an office or something.
5. What do I do with her furniture? Is that another thing I will get rid of and then regret I got rid of it? I keep finding places on her furniture that she actually wrote her name on. Seriously?
6. Do I put her stuff in storage?
7. When do I do all of this? At what point is it okay to have her room still the same, and at what point does it become creepy? When will people start saying, “I think it’s time they did something with that room.” I definitely want to do something with it before that conversation starts happening.


All these counselors will tell you that this stuff should be done whenever you are ready. There is no timeframe that should occur. But there has got to be. There is definitely a line out there in the universe that you cross too soon or too late. It still feels too soon to me because every season I think I can tackle clothing and I just crumble. But, I know it all can’t stay like that forever. It eventually will need to be tackled, just not sure on the rules for this stuff.

-Isabella’s mommy


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Why I Want To Come Back

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 7 quoteDay 7
Why I want to come back…

For years I wanted to run from the Foundation. It was something I was pushed into and I loved what it was accomplishing, but I needed more in my life. After she passed away it was hard for me to do the work. It felt meaningless and silly. The main reason for all of this was Isabella and it just didn’t feel right asking if my cause was gone. So I started to step away. I was able to bring an employee in and keep things afloat so that I could figure out what I was doing with my life while the Foundation could continue to grow slowly.

I went back to work. I really just stuck my toe in. I took a part-time technology-consulting job where no one really knew of my story or of Isabella. It was refreshing to be around people that didn’t hold me with white gloves, worried at any moment that I would crack. I could go to this job and do something completely outside of her and it was just what I needed. I realized that I was good at something again that didn’t involve taking care of a child, telling a sob story or asking for a donation. It was just a normal job, and I loved it.

Then something happened. We had a meeting set up to talk with Levine’s Children’s Hospital about funding research here in Charlotte. Just a casual conversation about where the funds we just gave them should be placed and what future needs they may have. We sat at a conference room table with other Foundations, heads of the giving department and one of the pediatric oncologists that I knew from Isabella’s time during treatment. As our discussions began, I noticed something about myself. I was falling back into my old-self. I was energized, passionate, knowledgeable and commanding. I couldn’t get enough of the information and it began to feel like the only people talking in the room were the oncologist and myself.

The current state of Neuroblastoma, the clinical trials, the funding, the hosptials… I couldn’t get enough of it. I was thirsty for the knowledge and I could feel myself coming alive again. It became something different for me being in these conversations the second time around. Maybe it was because I no longer had a life on the line. It took the emotion out of the cause and made it just a little less personal for me. The piece that it took out was just enough to draw me back into it. I was charged up and at that point I realized. This is my purpose.

People search their entire life for their purpose. Some never find it. But here I was, a couple of year under 40 and I was looking at mine straight in the face. All these years of running from it, only to find out it was what I was put on this earth to do. It’s been two months since that conference room discussion and now it’s all I think about. I want to be involved with every single aspect of the Foundation. I want to spend the rest of my life figuring out how to make this little idea of ours into something that is known worldwide. I want to really see how much money we can raise if I devote all of my time to it. What could we really accomplish if we were funding this cause with every thing we had?

I’m making it my mission to figure that out.

I want to come back and I can’t wait to get started.

-Isabella’s mommy

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