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September is Childhood Cancer Awareness Month.  Over the last four-and-a-half years, I have had the opportunity and honor to interview many parents who are a part of a club that they didn’t ask to be in.  There is a common bond when you can look at another parent and say you have been through exactly what they are going through.

I wanted to go through some of the amazing stories we have been able to share, and give you some of the clips and audio tips that we have gotten from so many families on this podcast.

This episode includes clips from…

[0:55] Tara Geraghty, founder of Making Cancer Fun 

When you hear the word “cancer”, you automatically think doom and gloom.  Tara tried really hard with her child to make cancer fun.  Her daughter was diagnosed with stage four high-risk neuroblastoma, but Tara never shared the stage with people.

When you hear “stage four”, people tend to think the chance of survival is very slim.  Tara didn’t want to deal with others’ reactions, nor did she want people to write her daughter off.  She worried that fear, sadness, or grief would transfer over to her daughter.  It wasn’t until years later, when her daughter was done with treatment and had been transferred to a survivors’ clinic, that Tara shared her daughter’s true diagnosis with anyone other than her mother and her sister.

Due to her background in personal development, Tara knew that what we focus on gets bigger – whether it is good or bad.  It’s kind of like when you get a new car, and maybe you have never had a Jeep before.  Now when you’re on the road, it seems like everybody has a Jeep.  Once the brain focuses on it, it looks for more of that.  Tara knew she had to shift her brain and force herself to focus on the things that she could be grateful for.  Every night, as her daughter lay in the hospital bed, Tara would get out her laptop and list all the things she could think of that made her feel grateful.

[4:45] Rosaria, sharing her experience of when her son was diagnosed with cancer

When her son, Brody, was diagnosed with cancer, Rosaria felt as though her parental role had been stripped away.  She could no longer protect her son, and instead she had to depend on chemicals and radiation.  This helplessness is one of the most difficult things to accept as a family.

[5:38] Gillian, sharing her experience with her daughter’s infant leukemia and its long-term effects

Gillian’s daughter had chemo at a young age, which can cause learning disabilities.  She has also had a brain bleed, and she has cerebral palsy.  Her daughter has cognitive processing issues that have been described to Gillian as a “blind spot”.  She can look up and to the left, and she can see what is there as well as describe what she sees.  She cannot, however, process any information in that field of vision.  If there were a stop sign to her upper left side, she could say it was a stop sign, but her brain might not tell her to stop.

Gillian also described a friendship she was able to form with another parent, whose daughter had passed away.  Her friend supported her through difficult times, as she was grieving her own daughter as well.  They kept up an ongoing Facebook message, and they would call each other whenever they needed support.  It can be hard to make jokes and laugh in the midst of such serious situations, but at the end of the day they were able to find the humor and build a connection.

[10:03] Scott Kramer, who turned his journals from his daughter’s hospitalization with a brain tumor into a book, and started an organization called Dancing While Cancering

Scott documented his family’s journey with his daughter Maddie’s brain tumor through journaling.  He has turned those journals into books called Maddie’s Miracles and The Miracles that Follow, and their organization is called Dancing While Cancering.

When they had to explain to their two-and-a-half year old daughter what was going on with her, they used explanations that they thought would resonate with Maddie.  They wanted to break it down so that she could understand, but also keep it positive.

They explained her neck was hurting because she had a little ball in her neck called a tumor, but her super doctors took it out and made her neck feel better.  Now she was going to have to take a special medicine called chemo to make sure the tumor does not come back.  That was the basic introduction, and if Maddie ever asked about her neck, they would reiterate that her super doctors took out the tumor.  

Within two weeks, they noticed that Maddie would play with her little Peppa characters and have them saying things like, “Oh Peppa, it’s okay.  You just had a tumor, but your super doctors took it out.”  Maddie put it all together, and her parents continued to break things down and add a little fun whenever possible. Medicine became vitamins that were going to make her stronger, and an MRI became a picture.  Maddie was able to move through an otherwise life-altering, traumatic, and soul-crushing experience while continuing to grow both emotionally and physically. Because of Child Life, they were able to create a safe bubble around her while still telling her the truth.

[15:49] Elizabeth Billups, who wrote a book for her daughter called The Puddle Jumper’s Guide to Kicking Cancer

Elizabeth shared how she handled all the emotions that came along with her daughter’s cancer diagnosis.  She connected with another mother, whose daughter was recovering from a spinal cord injury.  This mother told Elizabeth that one of her coping strategies was to go to a room, even if it was only a linen closet or some other small space like her car, and she would scream and cry there. Giving in to feelings and getting them out can help you to move forward.

Along the way, we’ve been able to share a lot of family stories about dealing with cancer and you can go find all of these and more at childlifepodcast.com, as well as a lot of resources you can print and share for children and caregivers.

Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.

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