Posted on Wednesday 11 September 2019
Darcy’s story – “In total we’ve driven around 17,000 miles for hospital visits”
Darcy was 8 years old when he was diagnosed with Acute Myeloid Leukaemia (AML) in 2017. His mum Jo tells us about the 166 mile round trip from their home in Louth, Lincolnshire, to Sheffield Children’s Hospital, and the other costs the family faced on top of that journey.
Darcy had never been an unwell child, but over the course of the summer in 2017 his parents noticed something wasn’t quite right.
Darcy’s mum Jo told us: “We were on holiday near the Alps and Darcy was fine and active whilst we were away, but we did notice he was pale. When we came home he developed a persistent cough which he had first thing each morning, but we put down to having a virus. Ten days later Darcy woke up with stomach cramps, he was doubled up in pain. It was really unusual for him to be unwell, he wasn’t an ill kid – he had a 100% attendance record at school, he’d never had a day off sick. We took him to the out of hours doctor who told us that it was most likely a virus that had irritated glands in his stomach. We were told to give him calpol.”
“Darcy has played rugby since he was four years old. Training started up again in late August after the summer break. Jay (Darcy’s dad) took him to the first practice and when they got home afterwards he said that Darcy kept sitting down and was tired, and didn’t seem interested.”
“Darcy started back at school in September and he seemed fine, but when I picked him up after school on the Friday that week he got in the car and he said to me “Mum, I’ve got a huge bruise on my leg!”, he rolled up his trousers to show me. He had the biggest bruise on his upper thigh. I said to him “what have you done?!”, and he said nothing, he had just bumped into a post after lunch, and lightly touched me to show me how light the bump had been. I thought it was odd he’s get a bruise so big from that.”
He had rugby training on Sunday morning and during that his dad noticed something wasn’t right. Darcy had gone from being at the top of his game the previous season to not being able to keep up with the other players. They went to the out of hours clinic but were told they’d be seen faster if they went to the A&E department in Grimsby. A doctor there examined Darcy’s bruises and did blood tests, and the family were sent up to the ward so they could put in a cannula.
Jo told us: “At about 10.30pm that night we were called into a room and told they think he’s got Leukaemia and that they wanted us to go to Sheffield Children’s Hospital. They said they’d called an ambulance to take us there that night. We arrived there at 3.30am. The next morning Darcy went straight into theatre for a biopsy and to have a broviac line put in. At 4pm that afternoon we told he had Acute Myeloid Leukaemia (AML) and they told us what was going to happen next in terms of treatment.”
“This all happened in the space of the 6 week summer holidays, that was it. It was a shock to the system! He started chemotherapy the following day.”
For Darcy’s treatment the family are travelling to Sheffield Children’s Hospital which is a 166-mile round-trip from their home in Louth.
Jo said: “We were doing that journey twice weekly at first. Since he was diagnosed, we’ve done the journey about 150 times. We’ve been adding up how much we’ve spent on travelling during that time and it’s shocking to us. In total we’ve driven around 17,000 miles for hospital visits alone since Darcy was diagnosed. In the past 18 months or so we’ve spent around £7000 on travel, £1200 on hospital parking, £4000 on fuel, and £1500 on food whilst travelling. This doesn’t include the cost of addition times we’ve had to get the car serviced or the extra tyres needed due to the amount of miles we’re driving. On top of that we had to buy a new car because we had an old VW Beetle and it wasn’t reliable enough to do so many miles.”
Darcy had four rounds of chemotherapy but relapsed following that. He had a stem cell transplant in November 2018, and is now having Azacitidine injections, a chemotherapy that is not used that widely in paediatric care. They are currently travelling to Sheffield Children’s Hospital once a week.
Jo told us: “We both have good jobs, we’re financially stable, and I feel really sorry for parents who aren’t in our position. I don’t know how they manage. Louise Dolphin, our CLIC Sargent social worker, has been amazing at helping to source grants for us to help.”
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