A few years ago, I was watching TV while eating dinner with my mom when a profound and disturbing commercial came on. It showed pale bald children staring into the distance with their dwindled, tired eyes. This depiction made me hurt and angry, and I said to my mom, “Why would anyone show images of sick children on TV like that – it’s too heartbreaking!” My mom looked back at me and said, “Imagine how their families must feel.” Little did I know that a heartbreaking story was right around the corner for our own family.
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It was a beautiful fall evening when I walked into my house smelling the food my mom cooked. I had a long day at work and was relieved to come home to enjoy a hearty meal and a restful night. Or so I thought. I received a call from my brother letting me know that my 5-year-old nephew at the time, Zein, was being rushed to the hospital because he wasn’t feeling well. I wasn’t too alarmed since Zein had fever and asthma episodes that required late night hospital visits before. The night went on, and I received another call. My heart felt heavy as I picked up. My brother tried to remain composed, telling me they found something, and it was going to be a long night. I decided to head over to the hospital to be with them. He was right…it was a long night that changed the course of our entire family’s life. Thursday, February 7th, 2013 was a night I will never forget.
“Your child has cancer” were the words we heard after a long week of metastatic work up. It took the doctors about 6 days to find out the exact disease that had attacked his little body. It was concluded that Zein was diagnosed with stage 4 Neuroblastoma, a rare cancer that attacked his nerve cells. I took a few weeks off to help my brother and sister-in-law navigate through the process since I worked in the healthcare industry. It took me a while to get used to the many compromises and adjustments I had to make while trying to be the best support I can possibly be to my family. I was secretly trying to cope with my own hurt and heartbreak watching Zein and our family go through some unimaginably difficult times while keeping our game faces on. It was emotionally hard. Sometimes even impossible to get through the day.
I was very involved with Zein’s treatment; I witnessed most of his chemo sessions, radiation treatment, surgery and most consultations. I became a part of his daily routine and got to see a whole new world I never knew existed. As we started to adjust to the “new normal,” we began to make friends with other ‘cancer families’ while observing their adjustments with their own children. After experiencing a few months of IV poles, latex gloves, and hospital food, I got to see the different resources provided to cancer children. I discovered many cancer organizations that were established yet underfunded and inaccessible for many of the children at the hospital. I felt sad knowing that there really wasn’t much to offer these sick children while they underwent treatment.
With adversity comes new opportunities.
During one of my many sleepless nights, I watched an inspirational documentary called “My Last Days.” It was a story about an 18-year-old young man named Zach who was diagnosed with terminal Osteosarcoma. The story portrayed his family and the life he decided to live during his last days. While the story had no happy ending, it allowed me to grief freely and taught me to accept the situation I was in with Zein. After watching the movie, I started to jog down some fun items I could give to Zein’s friends at the hospital. But a bigger ‘small’ idea began to surface. I texted my sister-in-law Radwa around 4 am, “Radwa..I have an idea to help the children we know. Are you in to help me with this?” She looked at her phone with one eye open (as she always tells me) and texted back “It’s 4 am …you’re nuts, and yes…I’m in, good night!” The next morning I fleshed out my idea by writing a 25-page business plan, and the rest was history.
This ‘small’ idea was meant to help children cope with the rigorous day-to-day cancer life. I named it Create A Smile, and it became a 501(c)3 nonprofit in the Southern California region. Create a Smile has a simple mission: to help brighten a child’s day by providing them with a gift they request. The gift can be as small as a toy and as big as a two day Disneyland trip. Gifts we’ve granted so far include musical instruments, iPads, game consoles, laptops, electronics, princess parties, limited edition Lego sets, and home renovations. Another concept that is part of our mission is our extravagant ‘Smile Parties’. These intricately themed hospital parties are dedicated to inpatient children who are unable to go home due to their aggressive nature of their treatment. A Smile Party can bring so much joy to a child who hasn’t been able to go home for weeks maybe even months. A party is not a party without special guests like Batman, Princess Elsa or even Spidey to sing and dance with the children, taking them on journey away from the hospital to help make their stay a little more bearable.
Cancer sees no ‘pediatric’ age limit!
We quickly learned that the term “pediatric” had its own limitations. We discovered that many pediatric organizations stop providing services at the age of 18. While this may be a concise definition of “pediatric”, it created an age limit to children who were diagnosed prior to their 18th birthday. Create A Smile decided to extend the age limit to provide gifts for patients up to 22 years old. This can help provide relief and ease to those diagnosed prior to their 18th birthday but are still undergoing treatment. Many hospitals understand the challenges of the age limitation and take advantage of this extension since we are the only nonprofit organization in California that is able to provide gifts to this large of an age group.
Create A Smile was born because we understand what it means to be a cancer family. We build relationships with every family we meet and work hard to generate experiences and bonds that last well beyond the gifts! We also focus on working with hospitals that serve low-income families who may be unable to afford many resources they need.
Since 2013, Create A Smile has successfully granted gifts to over 30 families and created smiles to over 215 children within the Southern California region. We have done this through our successful collaborations with CHLA, CHOC, and Loma Linda Children’s Hospital. We also have an amazing group of lead volunteers that have joined us and work tirelessly to help us create smiles! This year, we launched our #KidsHelpingKids campaign where we currently collaborate with local K through 12 schools, community centers for children, and other youth organizations like Girl Scout Troops.
As I continue to work in this field, I realize the epidemic of childhood cancer increases every year. Truly, cancer is a different beast when attacking a child. Hundreds of families find themselves in despair trying to help sustain their child’s attitude as they battle cancer. One of the most difficult challenges is witnessing a family trying to keep a positive mindset while dealing with their own grief and exhaustion. We see how cancer robs a young boy or girl from their childhoods. Create A Smile aims to enhance a child’s life by turning a frown upside down and help as many kids as possible connect to being a kid again by giving them an opportunity to take a break from needles, IV poles, medicine, and feeling the yucky aftermath of chemo.
Today, Zein is a two-time cancer survivor, Alhamdulilah. As I reflect back on that journey, I don’t know how I personally got through some of those days. I do know that the love of our family, the support of several organizations and the prayers we received from an entire community made each day a lot more tolerable. Mostly, it is the grace of God that provided me strength. I am blessed to see the wisdom in every test: that it brings an abundance of blessings, like Create A Smile, which bloomed throughout my journey with Zein’s story.
I now understand why it’s important to show bald children in cancer commercials on TV. While it can still be heartbreaking to watch these commercials, it shouldn’t be the reason NOT to share the harsh reality that comes with being a sick child. I now also realize that spiritual and emotional encouragement can be one of the key factors that help a patient cope with the effects of a long-term disease. Having a happier and more positive outlook while in treatment can even influence the responsiveness of the treatment, so it’s important to help a child feel that they can fight and be strong. That nudge of hope can go long way.
And sometimes, hope can be sparked by a simple smile that can make a difference to a child – even if it’s for an hour.