Tag Archive for: childhood cancer

Outside Looking In

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I haven’t been able to shake the news of TJ Anderson’s passing today. I can never fathom being in TJ or Isabella’s parents’ shoes, heads or hearts and losing a child to cancer. With Isabella, I simply watched from the outside looking in. It changed me forever.

I will never forget watching Isabella’s little body struggle for life with every breath she took during 3F8 antibody treatment at Memorial Sloan Kettering Cancer Center. I will never forget the 2 ER visits in one night due to adverse reactions to treatments that day. I will never forget taking a shift at night in the hospital so that Isabella’s parents could get some rest… and Isabella was up all night puking blood in a bucket while her life was hooked to machines. I will never forget the next morning as she lifted her head off the pillow and her dyed red hair was falling out AGAIN due to the kitchen sink chemo procedure. I will never forget sitting with her during chemo treatments at Levine Children’s Hospital and watching a teenager receiving treatment right across from us… when both Isabella and this teenager should be with friends or at school. I will never forget getting called in the middle of the night to come sit with Isabella’s siblings while her parents rushed her to the hospital. I will never forget Erin’s shaking hands as she begged and pleaded with the doctors to operate after they said there was no more options. I will never forget the doctors lecture on how it was time to think about Isabella’s quality of life. I will never forget kissing Isabella goodbye while she laid un-alert in her parents bed and how ashen she looked.

I will never un-see these moments. I saw too much to not take action and continue fighting. I watched from the outside looking in. It changed me forever.

We talk a lot about taking action… awareness is simply not enough. What are you doing to turn your awareness into ACTION?

– Rachel, ISF Marketing Director

TAKE ACTION:
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Sponsor: dre@isabellasantosfoundation.org

Healing Comes In Many Forms

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Isabella’s mom and Dr. Kaplan

It’s understandable that a mom would fall in love with the doctor who is trying to save their child’s life right? For years, Isabella’s mommy put their pediatric oncologist, Dr. Kaplan, on a pedestal. She remembers exactly what he was wearing the day she met him and could barely be in the room without sweating through her shirt due to nerves. They had a budding cancer romance.

 
“Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.”
 
Pictured here is Isabella’s mom with Dr. Kaplan at the Levine Children’s Hospital holiday party last night. Through this picture alone you can see that healing comes in so many different forms. For this cancer mom, she can endure conversations with her ‘oncologist boyfriend’ without anxiety attacks and can laugh over the romance she thought once was… and she can reminisce about Isabella.
 
Read more in the below blog article that Isabella’s mom wrote over 2 years ago detailing her cancer romance with Dr. Kaplan…

WHY I LOVED HIM (written by Erin Santos, Sept 4, 2015)

I have loved people in my life for a number of reasons. But this love was different than anything I have ever experienced. This love was built out of trust, admiration and hope for saving my child. You would hope that love should flow both ways and for the first time in my life, it didn’t – and I didn’t care.

October 4, 2007, he came into the room and introduced himself. He was 5’9, brown hair and glasses. He wore khaki pants with a rope belt that secured his pants that didn’t fit properly. A green shirt and tie that looked like the type you bought together in a box. His hand extends, “Hi, I will be your daughter’s oncologist. I’m so sorry about the news you received today.” This is the standard greeting they learned to give us during this time of sorrow.

As her treatment started, we saw him regularly. Every time we would come in, he would be waiting on us. “Hi honey,” he would say to her as he placed her hand on her back. I always got a firm handshake and a smile, very serious business. Isabella slowly let down her guard with him and started to feel comforted by his presence.

The days tuned into weeks that turned into months. But through this journey, I was starting to think he had been in our lives forever. He always knew just what to do and when to do it. I trusted him and more importantly, she trusted him. This was the man that was going to save her.

Isabella began to see him as family. She would spend time drawing pictures for him or do craft projects that she would set aside to bring up to the clinic to leave on his desk. My favorite is the picture she drew of the three of us holding hands, some weird new family we had developed into. She began to feel a level of peace with him and she knew he wouldn’t hurt her, if anything… he would make her feel better. We were a team the three of us and I could tell she adored him.

I began to trust no one or no treatment plan unless he was behind it. New York would pass down instructions of what we were to do. None of it would start until I talked to him and had his blessing. “Do you think this is the right thing to do? What would you do if you were me? How do you think the cancer will react?” I was grasping for his approval and sign-off at every turn. I engulfed myself in learning every piece of her treatment plan and could rattle off blood count numbers or medicine doses without even thinking about it. I yearned for him to know that I was knowledgeable about what was happening because in my mind I told myself that it would somehow give us an edge.

I even changed my appearance in a way that showed that I was “put together”. I’m not one of those moms who sulked around in sweatpants with no make up on. I was in better than those moms. I had my shit together. When he would come on rounds, I found myself being nervous or posing when he was in the room to seem unnerved by him or what he was telling me. I wanted him to trust the decisions that I was making just as much as I trusted his. I wanted him to think that I was more than capable to act when it came to her care than these other moms.

After years of working side by side in her journey, I started to know his footsteps coming down the hall. She and I could feel his presence before he even arrived. And I began to know the look on his face or the tone in his voice that would tell me that we were safe or we were in trouble before the news even hit.

Even when the news was bad, it still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.

When we reached the point of making the hard decisions, I felt that he and I would come up with a plan on what was best for her. He and I were determining her fate. My husband who left the primary care up to me would often get second hand knowledge of the plan that he and I already determined. It would be positioned in a way that always made him feel that he was a part of the decision. But I know that our decision had been made earlier in the day between the two of us.
I always knew in the back of my head at some point that she was going to die. People would tell me that she is going to be the one to beat it. But, I knew that she wasn’t. It was just a matter of time and options, and our options were running out. I couldn’t imagine what the dying process was going to be like for her. I just knew that we would somehow all figure it out together. He would walk along side our family, holding her hand across this invisible line, making sure that it ended with him just as it began. But, as always in cancer – things never happen the way you want them to.

The call we got from him in June 2012 that revealed the cancer had spread to her bones was the last time I spoke with him before she died. Due to unforeseen family circumstances, he was not available to us the last month of her life. We received no call, no card in the mail. I couldn’t understand him not being a part of this process in the end. This was his child too and she had fallen through the cracks and was dying without him.

The next time I saw him was at her funeral. I saw him out of the corner of my eye shaking my husband’s hand. I wondered what typical doctor response he was giving him that he learned after all these years of losing children.
I waited for him to come over to me. I felt sweat start to form out of every pore on my body. What would he say to me? I wanted to hug him and sob over our failure and have him reassure that we tried everything we could possibly do together to save her.

Instead, he shook my hand. “I’m so sorry for your loss.”

And in that moment I realized. The love I had for this man was one-sided. She wasn’t his child that he was trying to save alongside me. She was his patient. I was her Mother. He is a doctor and this is the business he is in. His handshake was firm, but it told me everything I needed to know. I tell myself that it would be completely unprofessional for him to hug me and cry. All the years of mentoring in his position must of told him to compartmentalize these situations or you will go down in the flames of depression each time you lose a child. But, I swore that she wasn’t just a child to him, she was different.

I couldn’t see him for a couple of years without going into a full-blown anxiety attack. I could feel tears forming and my stomach would be sick when I saw him coming over. It was unfair of me to put him on that pedestal if he were the God that was going to save her. I always craved that conversation that I wanted in the end. But that conversation never came… and I finally began to see him for who he really was…just her doctor.

-Isabella’s mommy

Donations At Work: Update on Project:EveryChild

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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!

Lake Norman Coffee for a Cure Brings in Over $35,000 for Pediatric Cancer Research

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2017 Lake Norman Coffee for a Cure. Photo courtesy of Localscroll.com

Our 2nd annual Coffee for a Cure hosted by our ISF Lake Norman chapter was a huge success.  Thank you to the 250 men and women who attended and the sponsors and local businesses who gave time and money to this event.  This event served as a call to action in the fight against pediatric cancer and to educate community members on the importance of bringing pediatric cancer treatments home to Charlotte.  We were able to raise $35,000 and donations have continued to come in.  These funds bring us one step closer to our 2017 $1,000,000 fundraising goal to fund the creation of a MIBG room at Levine Children’s Hospital.

Our Lake Norman chapter could not put on such a wonderful event if it wasn’t for the support of our community businesses who help us through their sponsorship. It is through their passion for charitable giving and making a local impact that we are able to continue Isabella’s fight. Thank you to the following businesses:

2017 Lake Norman Coffee for a Cure. Photos courtesy of Localscroll.com

During the event, we introduced our new major gift society, called The Three Wish Circle, with an annual gift of $5000 or more, donors can take their support of the ISF mission to the next level by funding more research for childhood cancer and help to bring innovative treatment options to our local community.  If you have questions or want to know more about how to take your support to the next level, contact our ISF Development Director, Tia Wackerhagen.

We cannot begin to put words to how grateful that we are for the impact you are helping us make, thank you for your support.. We are so proud of what we have accomplished together and it is because of YOU. We could not do this alone and could not continue our fight without your help. We humbly thank each of you and look forward to a world with no more cancer where we will beat cancer, grow hair and live the dreams of all children fighting the fight.

We appreciate Local Scroll Charlotte for capturing the event, view all photos of the 2017 Lake Norman Coffee for a Cure.

Awareness… What a Bullsh*t Word

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Originally published on HuffPost, written by Erin Santos

(Written and published 4 years ago, this article is the perfect reminder of why we refer to September as Childhood Cancer ACTION month)

a·ware·ness
noun

1. knowledge or perception of a situation or fact.
“we need to raise public awareness of the issue”
2. synonyms: consciousness, recognition, realization

September is Childhood Cancer Awareness Month, and as I sat eating dinner with my family the other night, I told my husband, Stuart, that I should write something for this month of awareness. I blurted out, “Awareness. What a bullsh*t word. That word is the problem.” And just like that, this blog post was born.

I’m sure the word “awareness” comes from back in the day, when no one spoke of cancer. The “C” word, as it was called. People died quietly. Very rarely was a child with cancer even seen. Probably because there were no real treatments for them, so they died so quickly. Even 20 years ago, they were barely saving one child who was diagnosed with neuroblastoma, we were told at our consultation with Memorial Sloan Kettering Cancer Center. Hell, we were told that our daughter, Isabella, wouldn’t have survived her brain relapse if it had occurred just three years earlier. Isabella would have been dead 9 months after her initial diagnosis. There wouldn’t even have been enough time for me to get her story out to you. So, awareness month was a good thing back then… hey, meet this little 3-year-old with cancer… Nope, wait.. She’s already gone.

But now, times are changing. These kids are fighting harder and longer. Their stories are getting out there because the chemo drugs are not curing kids, but they are extending their lives. People ARE aware of them. Awareness of pediatric cancer is out there. But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer month looks like: You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one. You think about signing up for a childhood cancer 5k, but your life is busy, so you don’t get around to it. You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and see how short Lindsay Lohan’s shorts were in NYC the other day… “Oh, no she didn’t,” you say. And then, you are running errands in late September and start noticing the city turning pink and think, I need to schedule that mammogram.

Then it is October 1.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars? Did you know that in 2012, the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars? That is something you should be aware of. Because in 2012, we spent less that 10 percent of that 2 billion dollars funding childhood cancer research, or less that 5 percentof the 6 billion-dollar-cost of 2012 government elections. And just 4 percent of the total cancer funding goes to pediatric cancer. Also scary to think about, 60 percent of all funding for drug development for adult cancers comes from pharmaceutical companies. What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research? Almost zero. Why? Because children’s cancer drugs aren’t profitable. Ouch.

There is some awareness for ya!

2013-09-04-Isabella_Santos.jpgSo, back to my issue with this “awareness” word. The movement I want to start is this… Let’s maybe change what your September looks like. Print a picture of my daughter. Tape it to the back of the doors in your house. That’s right, the front door and the back door. Every time you walk out the door, take a look at her.

She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA. She was 7 years old. She died about 80 years early. She also died because she ran out of treatment options. She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness. “Awareness.” Check. But then, when you get in your car to take the kids to school, go to work, go to the gym… think about something you can do that is ACTION. Forget awareness. September is Childhood Cancer “ACTION” Month. Do something that day that is action to save a child’s life. Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer. Can’t think of something to do for 30 days? Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are. Probably because they don’t have it… yet. Or maybe because we are all so “aware” of cancer, but aren’t taking action against it. Maybe we are all waiting for the future of cancer. In the new Matt Damon movie, Elysium, set in an imagined future, a quick scan on your body just “SNAP,” gets rid of it. The truth is, that is not even a remote possibility in your lifetime.

Every day I’m aware. I’m aware that she’s no longer with me. I’m aware that my 3-year-old daughter, Sophia, is inside coloring a picture for her right now. I’m aware that Isabella should be in the third grade this year. I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her. I’m aware that my 6-year-old, Grant, has nightmares about her. I’m aware that every day for the rest of my life I’m going to feel like there is something missing. I’m aware of a lot. So, the word “awareness” works really well for me in my life. Describe my life in one word, actually, and it’s probably “awareness.”

So, let’s not make this month about just liking a Facebook e-card about cancer or reading a family’s caringbridge entry and then walking away. Let’s all admit that awareness is just a legacy, bullsh*t word and lets all commit to making this month about action. Action saves lives, awareness does not.

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TURN YOUR AWARENESS INTO ACTION:

  1. DONATE
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