Kat Earley’s son Cohen was diagnosed with rhabdomyosarcoma, aged four. She writes about how staying active wherever possible played a crucial role in his wellbeing both during and after treatment.
In May 2020, my funny, loving, energetic, beautiful boy Cohen was diagnosed with stage four rhabdomyosarcoma. Before his diagnosis, Cohen was always jumping from anything he could climb on to. He could never sit still, and he definitely wasn’t a child I would have been able to take to a museum! Even the thought of sitting in a waiting room of any sort filled me with dread with the amount of energy Cohen always had.
Up until the day he was diagnosed, he never showed any symptoms other than a sinister lump on his left calf. But then, all of a sudden, we were confined to a bed on a hospital ward. Cohen had his Hickman line put in and was stuck to lots of wires and tubes and under constant observation. As he began his intense chemotherapy, we saw the energy drain out of him those first few weeks. He was struggling to stay awake, move around without feeling or being sick, eat his favourite foods, or go to the toilet. He really was a shadow of his old self.
However, on the days he had any energy we would go straight to a park or would spend the day at the Safari Park. Any time he could manage on his bike, or his scooter, would bring him so much happiness. When he finished his intense chemotherapy, he started to get his energy back, and he put more weight on. He was able to start kicking a ball about and got back on his scooter and his bike. It was really important to see him enjoying that time after lots of isolation in the hospital.
I always say if I had a crystal ball during those darkest times, to see that one day we would see the light and get our boy back, it would’ve made those times in hospital so much easier.
Even after major surgery to remove the sarcoma in his leg, Cohen didn’t take long to start walking about with the aid of a frame, and within a couple of weeks he was back on the scooter building his strength up. It was important for him to build up his confidence to use that leg again, as a quarter of his calf muscle was removed, and we really weren’t sure what his mobility would be like after surgery. So, to go from discussions with surgeons about removing his leg to see him running around racing his friends, playing football, climbing and jumping around, is amazing.
I always say if I had a crystal ball during those darkest times, to see that one day we would see the light and get our boy back, it would’ve made those times in hospital so much easier. Sadly, we didn’t have a crystal ball, but that’s why we had to keep positive. Anytime we could get outside walking, or playing together as a family, meant so much to us and helped so much during treatment and recovery, as it still does now.
Since finishing treatment, Cohen has joined the school football team and taken part in fun runs, which he even did when he had his Hickman line in. He took part in the Lidl mud run and this was a very emotional and proud moment to watch him taking on the obstacles, displaying the strength and determination that he showed throughout his whole cancer journey.
My advice to others is to see the strength of children. They have so much resilience. It will be the hardest thing you and they’ll ever go through, but where possible keep them active and get them outside. Anything that allows them to be that ‘normal’ child will not only build their confidence and strength but will also bring them happiness.
From Contact magazine issue 99 - Summer 2023
