Ella was 9 years old when her dad was diagnosed with brain cancer. Before his diagnosis, she witnessed him go to the ER after experiencing debilitating migraines for months. She experienced him code while in the hospital, which led to his immediate craniotomy and tumor resection. She saw her dad in ICU, in a coma, and intubated for over a week. She went to bed in my bed with me every night, because we were coming home to a house without her daddy, and we didn’t know if or when he would come home. The one positive, Ella DID also witness her dad’s strength and determination as he learned to walk and function again. All of these events are things a parent hopes their child would never have to experience. You never think when you have children that they could be susceptible to the dark and scary side of life so damn young; that they could one day witness your near death experience. Needless to say, on top of worrying for my husband’s life, I was also extremely worried about Ella’s mental well-being. I didn’t know what to do or how to handle it.
I made sure to be open and honest with Ella as much as possible. I talked to her every night about her experiences that day, and encouraged her to ask questions. Not long after Butler had his craniotomy, a child life specialist found me in the hospital to ask how Ella was doing. I can only assume one of Butler’s ICU nurses reached out to her for Ella because I didn’t even know such a person existed.
A child life specialist in a hospital setting is a trained professional who helps children cope with the stress of hospitalization, illness, surgical procedures, etc. They provide emotional support and therapeutic play to promote coping strategies and emotional well-being. We loved the child life specialist who found us. She managed to find Ella where ever we were in the hospital that day and would spend time with her. They would talk about anything Ella wanted, played games, and did crafts. One day they made non-slip socks with puffy paint for Butler, which Ella loved. She never pushed Ella to talk about what she was experiencing with her dad. She also talked to me about ways to help Ella and talk to her myself. It took a lot of pressure off of me, because as much as I wanted to help my daughter, I was no expert in how to handle this with her. We were exploring new territory together.
We questioned if even telling Ella her father had been diagnosed with cancer was the right thing to do. But her father and I both knew, Ella could handle the truth. We also didn’t want to hide anything from her, and looking back, there was no way we would have ever been able to hide or explain away what was happening to Butler. We agreed to keep her in the loop every step of the way, as long as it was family friendly. Once Butler came home from the hospital and was settled into a routine, we got Ella into therapy. I had already been in therapy for almost 2 years when Butler was diagnosed, and had started my own healing in regards to what we all experienced. Ella was understandably hesitant at first, and it took her a while to open up, but 19 months later, she now actively looks forward to her weekly therapy sessions. We both go together at the same time, but have our own separate sessions. It is nice to experience therapy and healing together, and I think the fact that we do it together helped her warm up to it more.
In about December of 2023, a woman named Katie (another child life specialist) reached out to me from The Lonon Foundation, and we have been members ever since! They are a local foundation that helps support children ages 5 – 17 who have a parent battling cancer. The Lonon Foundation deserves a blog post of its own, and that will be coming soon. They have been incredibly helpful in providing additional resources in helping Ella cope. We have found books along our journey that have also helped her. There is also a camp called Camp Kesem that is just for children who have a parent battling cancer. They have a week long camp every summer which gives the children to a chance to get away from what they are dealing with and connect with other children going through the same thing. One thing I will say, it must be incredibly lonely for a child that has a parent going through cancer. Chances are, that child doesn’t have friends having the same experience and organizations like the Lonon Foundation and Camp Kesem give those children a chance to make friends who understand what they are going through. Camp Kesem has charters all over the country. You can find out more about Camp Kesem and find a charter near you here: https://www.kesem.org/
All in all, I can’t say what has worked for our family will work for everyone. I do personally believe in being honest with your kids. They are resilient, and may surprise you at what they can handle. I am glad and content that my husband and I chose to be open with Ella through all of this. It gives our family a chance to bond in ways most other families couldn’t, and I feel like it has given Ella a chance to grow in many ways, especially her strength. I do hope Ella grows up, looks back, and is glad we handled this situation the way we did. All we want is the best for her and to support her through all of this, because her thoughts and feelings matter too.
