“We think that Hugh has cancer.”
It only takes a few words spoken in a hospital side room, and the life you once knew disappears.
Whatever mattered that morning becomes irrelevant. Whatever your plans were, gone. You have only one thought: please let my child live.
But outside that room, outside those hospital walls, nothing stops. Your mortgage payment is still due. Your employer still needs to know whether you are coming in. Your other child still needs collecting from school.
You are expected to manage all of it while trying to understand whether your son or daughter will survive. I know, because this was our life.
Our son, Hugh, was diagnosed with a rare cancer in October 2020. He sadly died on 18th September 2021, aged six.
In the 10 months between, my wife, Frances, and I lived around chemotherapy, surgery, scans and the desperate hope that a miracle would happen.
Hugh had a treatment plan. As his parents, we had to work out how to survive alongside it. How the family would navigate the pressure of it.
But nobody asked us as parents how we were. We were told in those first few days, “This isn’t in the parents’ handbook”. But what does this mean? And why is there not a page?
No one handed us a plan explaining how to protect our income, support his brother or recognise what the experience was doing to our mental health.
We were parents facing the worst thing imaginable, trying to find answers to questions we had never expected to ask and yet left on our own to do so.
People quite rightly focus on the child. So do the parents. You put your own needs somewhere much further down the list because there is always something more urgent, and nothing more important than your child’s future.
But those needs do not disappear. Exhaustion accumulates. Savings shrink. Anxiety follows you home, if you get home at all.
You try to sound normal on a simple work call while watching chemotherapy enter your child’s body in the hope that a miracle will happen.
Our additional costs whilst caring for Hugh came to around £8,000 over 10 months. Travel, parking and food were unavoidable expenses incurred because our son needed us there. For a family already struggling, how is that supposed to work?
A parent’s place beside a hospital bed should never depend on their bank balance or the goodwill of their employer. Yet goodwill is what families are too often left hoping for.
The same is true of emotional support. Being told to stay strong does not tell you what to do when you cannot sleep, cannot concentrate and feel permanently afraid. When your world is crumbling around you, sometimes a hand on the shoulder to say “You are going to be OK” would be a start.
But parents need help offered to them, without having to prove they are falling apart first.
Siblings need that recognition too. Hugh’s younger brother, Raife, was living through this with us. Serious illness changes the whole household, including the childhood of the person waiting at home.
And when a child sadly dies, the need for support does not end; it increases. Parents must somehow navigate grief alongside the financial and practical consequences of everything that came before – all on their own.
Frances and I founded the charity It’s Never You because families deserve better. Through Hugh’s Law, I am campaigning for the protection parents need to stay with a seriously ill child without sacrificing their financial security.
But employment protection must sit alongside a family support plan, beginning at the point of diagnosis. Every family should have a plan to guide them through practical help, timely financial support, proactive mental health care and support for siblings. Bereavement care should follow automatically when needed.
These things should be organised around the family – with hospitals, employers, schools and public services taking responsibility for their part. We understand that treating a seriously ill child requires planning and coordination. We should apply that principle to the people caring for them.
Parents will put their child first, whatever the personal cost. That love should never be mistaken for an unlimited capacity to cope.
I cannot bring Hugh back. But I can fight for the next parent sitting in that hospital room, whose world has just fallen apart and who has no idea how they will manage what comes next.
They should be able to hold their child’s hand without wondering whether they can afford to stay. They should have someone asking how they are, and staying to hear the answer.
Because when your child’s life may be measured in months, every hour beside them matters. You never get that time back.
Ceri Menai-Davis is co-founder of the charity, It’s Never You, which supports the parents and families of children with serious illnesses.
