Oliver’s story. “It’s so far and such a long trip for him”

When Oliver was nine months old his parents noticed a rash on his scalp – they went back and forth to the doctors and dermatologist and finally got the diagnosis of Langerhans Cell Histiocytosis- LCH in April 2022. Oliver had also developed a condition called diabetes insipidus which meant he was drinking up to six litres a day.

Oliver’s treatment was in Manchester which meant a 63 mile journey from home and then from hospital back once a week for twelve weeks. Oliver started to not like going on the motorway because he knew this meant they had a long journey to hospital.

Oliver’s family were supported by Josanne, a Young Lives vs Cancer social worker, throughout their treatment.

“We went back and forth to the doctors with this unknown rash. We got referred to the dermatology in Lancaster hospital and was going backwards and forwards to them, that was in September 2021. We finally got a biopsy in February 2022.

“We went in for a paediatric appointment, it was the first one we’d managed to get to because no one was putting two and two together or listening to our concerns or putting us through. We finally got to this appointment, we just thought it was routine and that she wasn’t going to be able to help us with the skin stuff because that’s only dermatology but she looked at the whole picture, put everything together and fought to get the biopsy results.

“She said to go over to the children’s ward and she’ll come find us when she finishes her shift and they told us then. It is a rare condition called Langerhans Cell Histiocytosis- LCH. Due to delays in getting a diagnosis he also developed another rare condition Diabetes Insipidus. Part of his pituitary gland has been damaged. It depends on which hospital you go to, it’s classed as a cancer in some and not in others but it’s treated like a cancer so it all goes through the same system.”

Oliver was transferred to Manchester where he went on to have chemotherapy once a week for twelve weeks.

“Once a week for six weeks we went into Manchester for chemo alongside that an awful lot of steroids. We did that again because it didn’t quite work enough, we did 12 weeks. We’re now on a maintenance programme – so now he has one chemo session every three weeks and five days of steroids with that as well, for two years.

“Our routine was we’d go into Manchester and then we’d go into Lancaster for a few days with a temperature, with some sort of cold viral infection. We’ve still got another year to go, we’re at a halfway point.

“We’ve got a suitcase we always take with us to Manchester, for every appointment we go to, it’s packed ready with two days worth of stuff for two people.”

On top of the stress of facing Oliver’s cancer treatment, his parents also had to pay up to £250 a month to travel to and from hospital.

“Manchester’s not the easiest place to drive into so it’s an hour and fifteen but it’s more like two hours and then the car park is a 10 minute walk away from the hospital, it’s onsite but walking at a toddler’s pace. I’d say it takes us just over two hours. For some occasions we had to be in really early – when we first started we had to be there for 8am, we left at quarter past 5. Occasionally we had to be in at 7:30 like for one biopsy so we were up at 5 in the morning.

“He’s got this obsession at the moment with not wanting to go on the motorway we think it’s where we’re going to Manchester and it’s so far and such a long trip for him, we think that’s why he doesn’t like motorways as much as a three year old can say.”

Oliver’s family did try to use hospital transport, but it would make the days much longer and it wasn’t appropriate for Oliver.

“We once did get a taxi home from Manchester and Oliver sat in the middle seat, it’s not a safe way for him to travel. We were waiting for a couple of hours but it was an unknown time they said ‘we’ve ordered you a taxi’ and that’s all the information you get, at some point you get a phone call from a random number saying ‘your taxi’s outside’ but that could be anything from five minutes to a few hours later, ours was two hours later – we were trying to get home for bedtime. For us, it just wasn’t an easy option to get the hospital transport.”

Oliver and his family have been supported by a Young Lives vs Cancer social worker throughout his treatment. She has helped the family with grants to cover some of the costs of cancer and has generally been there to help guide them through as they face cancer.

“It’s just quite a hard lonely journey, we know other people are going through the same thing and we know other people have got it a lot worse than us but just being able to chat through things with Josanne normalised things, which is really useful.”