18 years ago, when he was 4, our youngest son was diagnosed with Non-Hodgkin lymphoma. Today he’s a healthy survivor with a job, lots of friends and a girlfriend.

Vividly I remember my first steps in the hospital. I could only look at the other children. They were very sick. But one little guy was racing around on a scooter, a bag of liquid attached to his arm and his father running behind. Or that girl. She knew she was going to die, but asked me to help with her homework. Then I couldn’t understand.  Now, after listening to so many parents and children, I do. We all need hope. 

Parents listening to, with and about each other

First of all, parents of a child with cancer have to listen to themselves. Intuition is more powerful and important than many will admit. 

Nurses and doctors can encourage parents to listen to their own feelings. Parents confronted with a child with cancer can lose control. Listening to themselves gives them the power they need.

Listening to the child with cancer

This is one of the most difficult things. The threat of losing your child blurs your vision.  Parents want to protect and spoil their child.  Listening to a child’s real needs can help parents to be parents again. 

I remember when I was with my child on the oncology ward. I sat beside his bed.  I endlessly read him books about a little gnome, I tickled his back when he was restless from the chemotherapy and when he couldn’t sleep from the pain we took a bath together.

I tried to read his mind. What was going on in his little head? That he understood the seriousness of his illness was evident. “Do you think I’ll ever see the beach again?” was one of his first questions.

Listening to siblings

Besides being afraid and careful, siblings of children with cancer can be angry and jealous, lonely and left out.

A year after the start of the treatment of my youngest, his brother was lying in bed with toothache. He was very happy and smiled the whole day. It was him getting attention, at last!

Professionals can help parents by knowing the names of the siblings, by asking after them, by stimulating parents to talk to them and spare some special time with them, by inviting them to the ward.

Parents listening to each other

‘I was in the hospital with my daughter; my husband was at home with the other children. Although we phoned regularly, I missed his arms around me. Once at home, I thought it would be better. But I was exhausted. My daughter with cancer, the other children, my work, it was all too much.’

The little girl survived, but this couple had to start again.

Staying close as partners when you have a child with cancer is not easy. From the moment of diagnosis ‘normal’ life ceases.

Professionals can stimulate parents to spend time together. Ask them what support they have. Is their network strong enough? Do they need extra help? If they are divorced, are they still able to communicate?

Parents listening to doctors and nurses

Parents become cancer experts. Suddenly they use words like blood counts, leucopenia and bone marrow. The more they become attached, the greater the distance from the normal world.

‘I felt I was living in two worlds’ says one mother. ‘On the one hand the world of cancer, on the other hand the world of school, shopping, laundry, etc. I sometimes felt safer in the hospital than at home.’

Are parents listening to doctors and nurses?  Sometimes the bond between them is very close. But the relationship is unequal. Is it safe for parents to ask questions? Can they be critical? Of course, parents can be very annoying. But they are also vulnerable, anxious and tired. Encourage them to ask

questions and talk about their feelings.

Parents meeting parents

It’s comforting to hear that your feelings are normal. Parents can share experiences and learn from each other. How do you get along with a child with cancer? What about the other children? Is it normal to be afraid of the future? Is it normal to feel depressed?

In the end…

-          Parents need time to heal, to find confidence again.

-          Every child and every parent is unique.

-          Listen with your ears and your eyes!

-          Empower parents by stimulating them to listen to themselves.