Caring for a son with cancer

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This New York Times documentary follows the story of Regina Hensley and her son Andrew as he fights an aggressive form of cancer, Ewing’s Sarcoma.

For years, Regina Hensley struggled with addiction, even once attempting suicide. When her son Andrew was born, he gave her a reason to live. But when he received his diagnosis at 13 years old, Regina had to search for meaning once again.

‘Without Andrew, I can’t imagine what life would be about.’ -Regina Hensley

In response to the documentary, the Times received almost 100 responses from parents who were caring for a sick child. Cancer Advisor also has a collection of Personal Stories with experiences of childhood and adolescent cancer.

Receiving a diagnosis

Finding out about a cancer diagnosis can bring up a lot of emotions including shock, disbelief and even anger. Sharing the news with others can be some of the toughest conversations you’ll ever have.  For many people, the first step is finding out as much as possible about the relevant cancer type and treatment. Have a look at what other parents, teenagers and young adults have to say about getting support at diagnosis, and breaking the news to family members and friends. There are some great resources available to help siblings and grandparents. You might also find these resources about dealing with work and school/university to be helpful.

There tends to be ‘information overload’ in the early days, so don’t feel you have to take everything in at once. Processing what’s happening can take time; shock and anxiety are common responses. Lots of parents and young people talk about the importance of establishing a routine and keeping organised, and embracing offers of support. It’s also a good idea to keep a list of any questions you have for clinicians, so you’re ready when you see them.

“I remember taking the call from our family doctor, and hearing him say, ‘This is bad, it’s really bad. Your son has testicular cancer.’ I began to shake uncontrollably and had to steady myself by holding on to the kitchen counter. I felt as though I might fall over and not be able to stand up again.” — Kirsten Salter

“Why? Why him and not me? I have lived, he is just beginning his life. My son was diagnosed with Ewing’s sarcoma in January 2017 at the age of 20. I was at the doctor with him. There is nothing that can prepare you to hear your child has cancer, no matter how old they are.” — Wendy Johnson

“I had no words to describe the panic and terror that fled through my body after my son was diagnosed with cancer. He was a beautiful 17-year-old, and because he had no symptoms other than a little pain in his knee, this diagnosis shook us to the core. I remember getting the diagnosis by phone while at my office, and literally dropping everything I had and walking out the door and out of [the]job that I required as main breadwinner of the family.” — Elizabeth Crawford

Caring for yourself

Caring for a child with cancer can be physically and emotionally draining, and it is so important for parents and other family members to take care of themselves too. Whether you need information for parents, siblings, or grandparents, Cancer Advisor has a range of resources on coping with cancer.

“You pray for strength and talk to friends and try to not drown and disappear in the diagnosis and almost-dying moments and procedures and tests and the surgical waiting rooms. You meet parents who are going through similar [things]and are a few years more in it and see what they do. You get a sense of humor. You become friends with your kid’s doctor and nurses because you see them so much and you are grateful for them.” — Lisa Bingham

“I got busy reading, writing, decorating the room and getting engaged with my daughter’s day. We became best friends. We did our nails, played with makeup, and I even shaved my head to support her. We did it together. We walked it out together, each day.” — Melinda Cadwallader

“Our bodies are not designed for such high levels of continued stress. Cortisol levels always high, suffering from insomnia, exhaustion and trying to cope with the rest of life meant that my needs were last. The only thing I did for myself was listen to a meditation sometimes right as I was going to sleep, and get regular massages to help release the tension in my own body.” — Jen Bronk

Learning to find moments of joy

Andrew Holland

“I learned that even in the midst of incredible pain and sorrow, you must find those moments of joy. You must take advantage of every opportunity for a belly laugh. And you must realize that there is a lot of pain in this life, shared by everyone. Keep that in mind when you interact with others, and be kind. Be more than kind.” — Elizabeth Brubaker

“You can do all the right things, and be a good person, but tragedy doesn’t discriminate. I have learned to advocate and stand up and push until my voice is heard. I have learned how to be an ultimate protector of my little son. I learned who real friends are, and how people have a whole lot of love in them.” — Jessica Unruh

“I learned that worrying about future possibilities only makes life impossible to enjoy in the moment. There were often long waits to hear about tests results and it was unbearable at first. Then I learned to shut that away and live in the moment. I learned it was more important for my daughter to know how much she is loved than to worry about how well she will do in the future.” — Laura Saller

Cancer Advisor has a range of resources and support services for bereavement, but we’re always looking for more content. Leave a comment below, share your own story or recommend a resource.

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