Life and loss in lockdown – Fred’s story

We were the kind of family that fast forwarded through the sad stories.  In 2019, we watched Celebrity Hunted on Channel4 for Stand Up To Cancer, and would reach for the remote as soon as the ad break started “Who watches these?” we would all shout, and text a donation to assuage the guilt. “One in two people will get cancer in their lifetime” the ad break said.  Thirteen year old Fred turned to his brother and said “I hope it’s you not me, I don’t want it” and we gasped in outraged horror.

A couple of months later, Fred was diagnosed with Acute Lymphoblastic Leukaemia, almost overnight.  Apart from chicken pox and the odd ear infection, Fred had never been ill before.  He had been sent home from school on a Friday afternoon feeling unwell, and by Monday night we were in A&E receiving his diagnosis.

Our world ripped apart, just like that.  We were immediately transferred to Birmingham Children’s Hospital and treatment began the next day. 

You never think it will happen to your family until it does.

Suddenly we were locked down.  Our holiday was cancelled, Fred’s central line meant he could no longer go swimming.  We were not allowed to travel anywhere more than 30 minutes from our hospital.  I carried a thermometer in my handbag to check for temperatures.

Fred was a grubby boy.  His primary school teacher once said she had never known a boy so consistently dirty – muddy knees, grass stained shirt, dirty fingernails.  Suddenly we had to find a way to keep him clean.  We kept hand gel by the front door and all washed our hands 10 times more than before.  We had to check nobody was feeling ill before they visited.  We avoided crowded places and enclosed spaces.

I ran my own business but pretty much stopped working overnight.  I tried hard to get things  done but in reality, Fred’s treatment was a full time job and nothing could be planned in advance.  My husband’s company was supportive and allowed him to work from home.

After three months, Fred was entitled to Disability Living Allowance, our only benefit.  Our ClicSargent worker sat with me in the hospital and went through the lengthy application.  We sat and listed every drug, every side effect, every treatment.  Every way in which our lives had been transformed forever.  Every way in which Fred’s life was not what it had been.  I longed to write “my child had cancer” in sharpie across the front and was furious that they needed more than that for £600 a month.

By the time Coronavirus began appearing on the news, Fred’s situation was more precarious.  His cancer had not responded to chemotherapy, and he was waiting to receive Car T Cell therapy.  Initially, people’s anxiety about the virus only made us feel safer.  Welcome to our anxious world. Although Fred was high risk, at least everyone was washing their hands now.

As Coronavirus marched higher up the headlines, it really was the least of our worries.  Fred had a seizure which sent him to ICU, just as ICU beds were about to be in short supply.  We worried that the Car T Cells might not make it over from the States. We removed our younger son from school so that he wasn’t putting any of us at risk. 

As the rest of the nation wrestled with Joe Wicks and fronted adverbials, panicking over loo roll, we tried to make sense of how these rules could possibly apply to us.  We ran through the hospital equivalent of the fox, the chicken and the bag of grain as we tried to work out how we be a family when our younger son was no longer allowed in the hospital.  All of the things which had made hospital life bearable – fun even – were taken away.  The visitors, the communal areas, the school teachers, the youth workers, all no longer allowed on the ward.  The parents’ accommodation at the hospital closed.

Fred tested positive for coronavirus shortly afterwards, although he had no symptoms.  We were moved into an isolation room for 10 days.  Due to his leukaemia rather than Covid, we were told at the time that his condition was life threatening and he could deteriorate rapidly.  My husband would be allowed to see him, but if he did he wouldn’t be able to leave the room either.  So that’s what we did.  All three of us, in one hospital room unable to step outside the door.

Fred rallied, we emerged and were transferred to Great Ormond Street for his Car T Cell therapy.  His brother was allowed to sneak if for an illegal visit for half an hour before he left.  That was the last time he saw him.

Fred died on 3rd May 2020.  During the three weeks we spent at GOSH we did not see the doctors’ or nurses’ faces from behind their masks, we were allowed no visitors.  We spent Fred’s 14th birthday by ourselves, too tired for Zoom calls.

His funeral was held just as lockdown was starting to lift.  Only 10 close family members could attend an outside burial, no one could come in the house.  However, people lined the streets as his motorbike hearse drove through the village.  His brother and a group of his friends rode their bikes behind him.  People left messages and memories on the tree outside our house.

We were left alone to grieve.  Like the WH Auden poem, all the clocks had stopped.  Everything was spoilt.  There were no parties, no holidays, no barbecues, no sports days.  Just quiet.  It felt like the world had been put on hold, just for us, and just for him.

I vividly remember, weeks before, sitting in Fred’s hospital room watching Rishi Sunak announce his emergency measures.  These were unprecedented times. It was unthinkable that people could be expected to take indefinite unpaid leave overnight.  This unforeseen crisis would have devastating consequences on families through no fault of their own, and they needed the nation’s help.  The emotional fall out should not be underestimated. It brought into sharp focus that this was exactly what had happened to us 9 months earlier.  Our life had shut down overnight and there was no rescue package, nor for any of the other families on that ward.

We were lucky enough to have incredible family and friends.  They paid our mortgage, bought us food, tended to our garden.  They’ve left things on the step and invited us into their gardens, they raised money to provide us with some security. 

I hope that over the last 6 months we have all learned that we are all just a moment away from the unthinkable. But as lockdown returns, and we all worry where we will be for Christmas, we are left knowing that will never happen for us.  Our lives are forever changed. 

We can only resolve to make sure that other families are not left to cope alone.

We have set up the Don’t Look Down Fund in the hope that more children will get the chance to live the life they deserve. Fred’s medical team said that they still don’t know why some types of leukaemia don’t respond to standard treatments. The money raised will fund research into finding new cures and treatment plans for refractory ALL. We also would like these new treatments to be kinder to children, with less short- and long-term side effects than existing chemotherapy.

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