“He gets his car and rides around all three wards”– meet Hugo
11 Sep 2023, 5:28 p.m.
This Childhood Cancer Awareness Month, we meet three-year-old Hugo.
He arrived at GOSH just before Halloween last year to receive treatment for hepatoblastoma – a rare type of liver cancer.
Since then, Hugo’s undergone chemotherapy and a successful liver transplant. Today, he’s doing well.
His mum, Jasmin, shares their story.
Arriving at GOSH
“The only symptom Hugo had was a very mild tummy ache. It started when we were on holiday,” Jasmin begins.
At first, they thought Hugo might have a viral infection. However, two weeks later, the discomfort still hadn’t gone, so Jasmin took Hugo to their local GP.
“He did a thorough check,” Jasmin says. “When he felt Hugo’s tummy, he said he could feel Hugo’s liver was enlarged.”
Hugo was referred to his local hospital that evening for tests.
“First of all, they did bloods to check for blood cancers and infections, but still nothing was coming back,” Jasmin recalls. “Then they did an X-ray and then an ultrasound, then a CT scan and then an MRI scan, and that’s when they found he had a lump on his liver.”
Jasmin and Hugo’s dad, Mike, were told they could go home and should expect to receive a call from GOSH later that week. They ended up hearing the following day.
“We went trick or treating with the kids early, and while we were out, we got a phone call from GOSH telling us to come up the next day,” Jasmin recalls.
“Within a week of our GP appointment, we were already at GOSH having a biopsy and having a PICC line put in.”
Chemotherapy every two weeks
Hugo started chemotherapy a few days after arriving at GOSH.
“Everything happened so fast, it was hard to get your head around it,” Jasmin says. “I was grateful it happened so quick, but at the same time, I felt a bit like, ‘what on earth is going on here?!’.”
During that first stay on Lion Ward, Jasmin stayed with Hugo. Mike stayed in parent accommodation.
“Hugo’s very attached, and he won’t go anywhere without me,” Jasmin says.
Hugo went on to have chemotherapy at GOSH every two weeks.
“He had two different lots of chemo,” Jasmin explains. “[When] Hugo wasn’t an inpatient, we visited Safari Ward and stayed in the patient hotel.”
Hugo needed chemotherapy the day after his third birthday, shortly before Christmas.
“We were on Safari Ward and they brought him up a birthday present and a card, which was lovely,” Jasmin says.
Waiting for a liver transplant
Hugo was added to the waiting list for a liver transplant at the end of January.
Initially, no donors were suitable. Hugo then had COVID and had to come off the list. He had more chemotherapy before going back on it.
Hugo had to come off the list again on two more occasions.
“He was on the list for too long without getting a phone call, so he had to come off and have more chemo again. Then he had a cold, so he had to come off the list and have more chemo,” Jasmin explains.
In May 2023, Hugo finally had his liver transplant. While Hugo underwent all his chemotherapy at GOSH, he had his transplant at the family's “closest hospital that specialises in liver transplants”.
He had one more round of chemotherapy after the transplant and has now finished treatment.
Watch the moment Hugo rings his end of treatment bell in the video below.
In the video, Jasmin reads the poem next to the bell aloud:
“Ring this bell three times well its toll to clearly say my treatment's done this course is run and I am on my way!”
Home away from home
During Hugo’s time at GOSH, it came to be like a “second home for him”.
“Hugo loves going to GOSH,” Jasmin says. “You don’t ever expect your child to love being in hospital or to spend that amount of time in a hospital. The fact Hugo’s so comfortable at GOSH is so nice.”
For Jasmin, the staff at GOSH were “amazing” throughout Hugo’s treatment.
“The Play team are fantastic,” she adds. “They always ask what Hugo wants to play with, and they bring the toys to him, which helps a lot when he has to stay in the room.
“Whenever we get transferred to GOSH ... he goes and gets his car from the Playroom and rides around all three wards.”
Hugo has also received support from the clinical teams at GOSH.
“Hugo has got his favourite nurse on Lion Ward,” Jasmin says. “She is absolutely amazing with him no matter what. Whenever we’re in, she always comes and sees him. She was the first nurse we had at GOSH when he started his journey, so it’s nice that he’s got that connection with her.”
When Hugo had his line put in, Jasmin was impressed by how much effort was made to put her son at ease.
“I cannot praise the team who did it enough,” she says.
“The anaesthetist had a game that Hugo could play while he was going to sleep. Hugo is Paw Patrol mad, and the surgeon had a nice little Paw Patrol cap on, so Hugo loved that.
“After Hugo had woken up, one of the team actually brought him some Paw Patrol pyjamas up.”
For Jasmin, little things like this went a long way.
“It made everything go so much smoother. They were just amazing, they connected with and made so much effort with him. It was such a bonus.”
For Jasmin herself, the Psychology team at GOSH have also been a source of support.
Children’s Cancer Centre – helping children like Hugo
The new Children’s Cancer Centre at GOSH will help children like Hugo.
For Jasmin, bigger, better-equipped rooms will make all the difference to families like theirs.
“Hugo co-sleeps, he has really bad nightmares. When we’re in GOSH, I have to sleep in one of the little hospital beds with Hugo, so we don’t get a lot of room,” she explains.
During treatment, Jasmin found that Hugo would often feel too sick to eat during the lunch round – due to the timings of his medication. He would only feel up to eating a few hours later.
GOSH is developing a model to cater to every child’s dietary needs in the Children’s Cancer Centre.
A purpose-built kitchen will have a ward-based chef. They will provide a more tailored service based on individual preferences and needs.
Having the ability to provide children with recognisable home comforts can be transformative.
While Hugo has now finished treatment, the chemotherapy has caused some hearing loss. Research into kinder and more gentle treatments is desperately needed, and the new centre will help to deliver those breakthroughs.
Find out more about the centre and how you can help build it by visiting our Children's Cancer Centre page.
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