By theguardian |

Experience: I didn’t leave my son’s hospital room for 47 days

In January, just after our eldest son turned four, he was diagnosed with high-risk stage 4 neuroblastoma. It’s incredibly rare; only 100 children in the UK get it each year; our Olly was one of the unlucky ones. It was a shock. He was a fit and healthy boy who loved PE and riding his bike. He began a raft of tests, procedures and chemotherapy at Leeds General Infirmary, a 40-minute drive from our home in Ackworth. My wife Laura and I stopped working to focus on Olly.

As coronavirus spread across the UK, we pulled our two-year-old, Alfie, out of nursery, and the four of us began shielding at home. It was an oddly peaceful time, but then came the next stage of Olly’s treatment: inpatient stem cell treatment and high-dose chemotherapy. Doctors told us that one of us would have to isolate fully with Olly in his hospital room for as long as the treatment lasted; the worst-case scenario was that it could be months. Laura and I had never been apart from each other except for a few weekends away with friends. Now we had to split our family in two.

On 27 April , Laura dropped us off in the hospital car park and told Olly how proud she was of him. We were admitted and shown to our new home: a 15 sq ft room with an adjoining bathroom. I had a single bed that pulled down from the wall. We had both brought our own pillows from home. Olly couldn’t leave the room, and I could only go as far as a small kitchen down a short corridor to make a drink. There was no need to cook; the hospital provided us with three meals a day.

Before this, I was really active: playing squash, cricket and going for runs. I was conscious of not letting my own health deteriorate too much, but some days that was easier than others. Our time was dictated by Olly’s treatments, or his health and mood that day. Sometimes it felt as if I blinked, and it was already dinner time.

Developing a structure was crucial; we would try to wake up at the same time and do Joe Wicks’ workout. Olly would join when he could. We’d have bath time every night, to help him wind down. Every few weeks, I would pack up our dirty clothes and we’d swap them for clean ones Laura brought to the hospital.

As the days turned into weeks, we watched a beautiful spring develop outside. The sunny bank holiday weekends were especially hard, knowing everyone was off work enjoying the clear blue skies when we couldn’t even feel fresh air.

The worst days were when Olly struggled to cope. He had seven pumps in his body, and two cannulas, and his stomach was sometimes so sore it made him cry. Olly was born on Boxing Day, so he loves Christmas, and Christmas films gave him a much-needed escape; I think they reminded him of his happiest times.

We were also grateful to the hospital’s play team, who visited Olly on every good day. A tray filled with sand and dinosaurs was his favourite, along with a mini paddling pool they set up on the floor. This situation would have been so much worse if the staff hadn’t treated us like a family of their own.

Not knowing when we’d be allowed to go home made it hard to believe it would ever be over. Eventually, after a couple of false starts and 47 days, we were discharged. We’re now planning a special third birthday party for Alfie, as Olly and I missed it this year.

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There is still a long way to go, starting with daily outpatient radiotherapy for six weeks. The cancer has already shrunk in all areas of Olly’s body. We hope for an all-clear soon, but the disease has a very high relapse rate. Doctors say that if you can get to five years without the cancer growing back, it probably won’t return. That’s why we’re raising money to go to America for a clinical trial, which aims to reduce the chance of it returning.

If Olly ever has to do this for someone one day, I’d tell him not to try to do it alone. When so many people are constantly messaging, looking for updates and trying to help, it can feel overwhelming and it’s tempting to shut off. But letting others help and give their love makes a phenomenal difference.

• As told to Grace Holliday.

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