When Romesh, then four, started complaining of tummy pains, doctors told his mum it was stress because he was about to start school. But after a fall in his bedroom in August 2012, his mum took him to Barnstaple Children’s Ward near the family home in Braunton, Devon.
“When they told us it was leukaemia, I was not expecting it” said mum, Stephanie. “I had no idea what was coming. It was in the middle of August. I just couldn’t get my head around the fact that he wasn’t going to start school. Everything changed in that moment. It is still a bit of a blur. I think we just couldn’t believe it. It’s like time stood still.”
Romesh was referred for urgent treatment at Bristol Children’s Hospital – a two hour drive from where he lived with his parents and three younger brothers, including three-month-old Ravi. A CLIC Sargent social worker immediately arranged for a space for the family at CLIC House – a free-of- charge place to stay for families facing cancer while many miles from home.
“CLIC House was amazing” added Stephanie. “It just felt like home. It didn’t feel clinical. It was so clean, but in a home-like way. Romesh would move down stairs and he would just fall asleep watching films. He was on steroids so he wanted to eat all the time. I have some funny memories of being in the kitchen in the middle of the night cooking sausages and someone else was making a roast dinner. It was 2am and we were like zombies making this food.
“Some of the families we met at CLIC House we are still in touch with now. Just having those other children, who were either having treatment themselves or siblings, was great for Romesh. I remember one day he was feeling a bit better and them all playing hide and seek and he was just crawling about because he couldn’t walk, and he laughed for the first time in such a long time. He had gone quite insular because of what was happening, and I remember his laugh. It is just little memories like that. With all the sadness there were little bits of fun and the staff who worked at CLIC House were so nice, so kind.”
The treatment left Romesh temporarily so weak, that he was unable to walk. But as he got his strength back, he was able to leave hospital and continue nine more months of treatment as an outpatient at the Royal Devon and Exeter Hospital. There, CLIC Sargent funded a nurse who would visit Romesh, taking bloods at home and school to minimize disruption to family life.
“Our CLIC Nurse, Jenny Birch, was completely amazing” said Stephanie. “She would do his weekly blood tests, but she did so much more than that. She was just there for us whenever we needed her.
“Romesh loves Jenny and CLIC Sargent so much that he is always keen to do fundraising. He did a little stall at the school fȇte. All the proceeds from the fete were going to the school, but Romesh said he wanted to do it for CLIC Sargent, so he did. And he made lots of Easter decorations and sold those. Then one time he grew a load of tomato plants and made £100 selling them.
“Romesh had his last treatment on December 30, 2015 – he had his last chemo at Disneyland. He rang the bell at Exeter. It wasn’t long after Exeter had got their end of treatment bell, so that was really special.”