Executive Director Update, September Edition: Through My Eyes: This is Childhood Cancer

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Through My Eyes: This is Childhood Cancer

Written by Erin Santos, Isabella’s Mommy

September is an exciting time for us here at ISF. We find it to be the one month out of the year where a small spotlight shines on pediatric cancer for almost 30 days. For over 13 years, our flagship event has taken place during this month and we work day and night, taking the stage, to shout our mission from the rooftops until we are covered up by swarms of pink each October. So, bottom line, we take this month seriously and take it upon ourselves to educate you on what is really going on in our community. It’s our best series of the year and we are excited to bring it to you once more. New families. New perspectives.

“Through My Eyes”. I remembered the meeting like it was yesterday. Rachel Wood, our Marketing Director came and sat in my new dining room just months after we had moved in. She introduced me to an idea that centered around a concept of introducing “New Isabella’s” as we always referred to them. It became increasingly difficult for me to speak about Isabella at ISF events because I felt I had become ineffective as we get further out from her life. During this meeting I met them all. Brinn, Merritt, Max, Corey, Mackenzie and Nicholas. 6 kids with 5 different rare cancers. She told me their stories and I learned about their families and I read about their journeys. These families let Rachel into their own personal lives and for the first time in years, I allowed myself to be thrown back into it. To be honest, I was nervous. After being in a horrible car accident (called cancer) you find yourself hyper aware of danger and sense possible accidents before they occur. When I read these kids stories, I found myself hopeful, but also felt like this seatbelt needed to be tightened.

We learned about stories of hope and kids who overcame some rare cancers that maybe didn’t seem so possible to beat on Day 1, but also saw real struggles and journeys reach a point where there were no options left. Some of the kids and their families fought until they couldn’t fight anymore.

Since featuring these 6 children last September, we have attended one funeral, watched one pass away during COVID and continue to cheer for one still fighting hard. The good news? Three of the others have beat cancer, grown their hair back and are now living their dreams.

But we are currently in a world that looks nothing like 2019. I loved what our “Through My Eyes” series did to my heart last year, so I asked if I could be pulled in this time around. What once was Rachel walking side by side with these families in the Levine Children’s hallways has become a world of zoom calls. Luckily this is a world these families are getting to know all too well so after a few technology hiccups, we all got to know each other. Virtually.

The interesting thing about cancer or “pediatric cancer” specifically, is how the word can sound so general. As if the word “cancer”, in some way encompasses a large group of people, experiencing the exact same thing. We discovered from our first meeting that pediatric cancer is far from general in that way at all. Every single family we spoke to had such a different story. Some shout their journey from the front stage and wear t-shirts announcing their diagnosis, while others quietly shield themselves from the world of cancer and wear a tight buzz cut not allowing anyone to know what their family was going through. Every experience is so different. As we talked with these families through Zoom, I found myself relating to every single one of them. One thing was for certain, each family at one point said they were told, “Your child is responding, or in some cases not responding, like other kids with this disease. So now your child is on a treatment plan made just for him/her and we will have to cross our fingers and hope for the best.” I can’t tell you how many times I heard that… welcome to rare cancers.

But what I also found in talking to these families is that even though they all seemed so different, it all still felt the same. The feeling of fear, loneliness, uncertainty but still hope. Not to mention the fact COVID-19 is another weight they have to carry during this time. Gone are the days of bringing the whole family together during inpatient treatment so siblings could crawl in bed together and watch a movie just to feel a sense of normalcy. Gone are the days of friends and family coming up to just sit with you during a 10 hour infusion room day that has gone horribly wrong and long. How about traveling for second opinions or treatment in a different hospital to receive something your kids needs but can’t get locally, it’s now harder. Travel has suddenly become scary. I can’t tell you how I would have emotionally and physically drowned without the support of friends and family during our time in treatment. Some days it saved Isabella and I both. Covid has made cancer a very lonely place to be.

If there is one thing I am learning by meeting these families is that it makes me realize how strong these kids and their families are. Some calls, I had a hard time holding it together honestly. A beautiful 15 year old girl brought me to such tears I had to step away more than a couple times. Her positive attitude, her hopefulness and how I couldn’t help but look at her and see what would have been my own 15 year old daughter. I could only hope my Isabella would have been as strong and resilient as this girl is. I asked her a question, “what does it feel like when you get chemo?”, she answered… “I feel like I will never be the same. As it took my hair, I felt it stripped my identity with it”. Crazy thing is, as she told it with tears bubbling from her eyes she had a smile on her face. She has kept her cancer private from her friends because she doesn’t want the steady stream of positive or sympathy text messages. Instead she has decided to wait until she has beat it – and then let them all know what she accomplished while they were away in quarantine. Did I mention she is 15?

One significant thing these families have in common is they never thought it would happen to them. See, pediatric cancer doesn’t run in the family. They don’t get these diseases because they smoked for 30 years or lived a lifestyle that earned them cancer in some way. They are all just normal, healthy kids who were told one day their life would never be the same, AND told the cure they need is in the hands of doctors they have never met. Waiting on funding. All these families are so grateful for what we do and the support we receive from you during this month provides the hope they need. My hope is you will dive into this series, meet these kids and families, read their stories and share it with people you know. Donate to the cause as if it were your child and ask your friends and family to donate as if it were too. Be touched by a child this month and raise money on their behalf. So many of these families will be telling their stories for the first time because they hope it will invoke change and cures. Show them you are there behind them and know that every dollar you donate provides hope in a time when hope is something we could all use a little more of.

“Through My Eyes” is a series in which those affected by childhood cancer share a behind-the-scenes look into the ripple effect cancer has in their lives. Our goal is to raise $50,000 for rare pediatric cancer research in the month of September. You can follow “Through My Eyes” presented by Atrium Health Levine Children’s on our Facebook and Instagram social channels throughout the month.

Enhance your impact by GIVING MONTHLY.  Be part of something ongoing and make a difference… Every. Single. Month.  This helps sustain our efforts, longterm… just a little at a time without financial burden on you.



8.26:  A Glimpse into Childhood Cancer Awareness Month

8.30:  Cancer Free & Living Her Dreams[/av_textblock]

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