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What do families experience when facing childhood cancer?
The experience is often described by families as a marathon, an emotional rollercoaster and an overwhelming time for all members of a family.
The childhood cancer experience is a challenging and emotionally difficult time for every member of a family. While families will often go through similar milestones, every family’s experience with childhood cancer is unique.
In this article, we provide a starting point for you to understand what usually happens at these milestones so you can better understand what a family you care about may be facing and how you can offer your support.
When a child is diagnosed
Parents and carers are never prepared for a cancer diagnosis, and it could come as a shock, turning a family’s world upside down. They could feel sad, anxious, angry that this has happening to their child, and they could have a fear of the unknown.
”Finding out Ollie has a brain tumour was devastating. Obviously, you can’t plan for this. We would never have thought having a few ear issues and a lazy eye would turn into a brain cancer. It turned our life upside down. I just started having those flashes in my brain of how life is going change and we have no idea what’s coming at you. It was very intense.”
“When you think cancer, you think its life altering and life changing and, in that instant, my son’s life and he’s mortality is being brought into question.”
During treatment
During treatment one parent may have to give up work to be a full-time carer for their child in hospital and the other may take over the family and household responsibilities. They will need the support of their extended network of family and friends. Every reaction to a cancer diagnosis is unique and no one family goes through the same cancer experience.
“If you know someone going through cancer, childhood cancer, then even if they don’t ask for your help, they need it. They need you to be there and support them and help them in any way that you can. Target your support and be purposeful in it. Don’t just cook them lasagna but cook them food they like. Don’t wait for them to ask for help; just go and clean their house, clean their toilet, and wash their clothes. If you think about it and be purposeful, then they will be even more grateful for what you do.”
Parents need to look after themselves while their child is getting treatment and sometimes that can become hard because they are entirely focused on their child. It can become overwhelming when one parent is full-time carer at the hospital and the other is trying to manage work, home life and other children. Emotions could intensify due to:
“It was helpful when friends would come and pick up Matilda’s older sister, so that Will and I could also get some time together because we had so much time apart. It was really helpful for Will and I, just to get some time alone just to reflect and just be together.”
You may be able to help by doing something as small as relieving the parent at the hospital so they can sleep or take a walk in the fresh air to clear their head and find some balance or bringing them a healthy meal to keep their energy up. The support you offer, no matter how minimal can help shifts their thoughts so they can recharge. For the parent at home, they may be under stress with the additional responsibilities and could be feeling the pressure of everything happening all at once.
“I remember one time I came home from hospital and my mum had washed and folded and put the clothes away and it was amazing. Even though it’s something little, it was so nice not to have to worry about that.”
Each family member could be processing the cancer in different ways. Young children could present behavioural issues or separation anxiety, older kids may shutdown and internalise their emotions, not wanting to talk, which may cause additional worry to the parents.
“I was having to grapple with this new identity that I had assumed that I didn’t ask for. No longer was the person that I thought I was, I was now a cancer patient. I think an identity that I had assumed that I still, I think to this day grapple with really, truly believing that was something that was bestowed upon me. And I think that connected with all the other challenges that I had. Instead of being in class, I was in the chemotherapy room. And so, I was behind a lot of the times with school and schoolwork, which again, for me as somebody who was really studious, really disrupted and it impacted my mental health.”
End of treatment
At end of treatment, parents could have mixed feelings and emotions about their child coming home:
The reality of their child’s new future could be faced with worry. The child may have fallen behind at school or hasn’t hit age-appropriate milestones or can’t be out in large crowds. A parent who may have had to leave work may worry about their career and finances moving forward. Creating a new normal for the whole family can take time as parents may be exhausted from months of treatment.
Sometimes the family’s repressed feelings and emotions can resurface once the cancer has gone and become overwhelming, sometimes requiring outside support or counselling.
“I remember earlier on, talking to the councillors and feeling like somebody outside of my family situation were there to talk to, so I didn’t feel like I was burdening my family. I didn’t know what my thoughts were around what I was going through, and I felt valuable speaking to the Redkite counsellors.”
Each family members reactions are unique, and we hope this article helps explains some of the feelings and emotions a family facing childhood cancer may go through.
We hope that this article can act as a base for you to understand the feelings and emotions a family may experience so you can provide more meaningful and personalised care for them.
Please remember that Redkite is here to support you as you help care for a family facing childhood cancer. You can contact us here.
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