Experiencing GOSH: Josh's Story

When Josh, 16, went to his local hospital for a routine operation to remove nasal polyps, his mother Dawn was told that he actually had a large tumour known as Juvenile Nasopharyngeal Angiofibroma (JNA). They share their story:

“For about a year prior to my diagnosis, I felt constantly bunged up. I couldn’t breathe out of one side of my nose at all, so I couldn’t smell or taste anything. I was getting headaches and dizziness – it was affecting everything,” Josh recalls.

“The noise when he slept was horrendous,” begins Dawn. “I’d listen out for his breathing, which would suddenly stop until he gasped for air again. Food had no taste to him, so he didn’t eat much and lost a lot of weight. He would get headaches looking at the whiteboard at school, and wasn’t playing hockey to his usual terrific standard, losing all his fitness.”

“I was prescribed nasal sprays with steroids and when that didn’t work, I was told it was polyps, a fleshy swelling that develops in the lining of the nose,” Josh explains. “I was booked into theatre at my local hospital to undergo a small operation which would remove them, under general anaesthetic.”

Unfortunately, Josh was unable to undergo treatment at his local hospital, as it was made clear that what was thought to be nasal polyps was actually JNA, a much more serious condition.

“We were told that Josh had JNA, a rare benign tumour that had been growing for a long time into every cavity it could find. It was huge. It was even wrapped around his optic nerves. In fact, we realised we could physically see it. His face was puffy and taut at the same time when you touched it.”

“It bulged out” says Josh. “We’re lucky it didn’t go to my brain to be honest. If it went to my brain we would’ve been in serious trouble.”

Arriving at GOSH

“We came up to Great Ormond Street Hospital (GOSH) for the first time around April 2017 and Josh had his first procedure at GOSH that August,” says Dawn.

“The operation went well, but by the following February, Josh was starting to see symptoms a second time. The tumour was growing again. They had hoped that it wouldn’t regrow, as JNA generally affects adolescent boys and typically begins to resolve once adolescents stop puberty growth, and Josh was 16. We were brought to GOSH again in November 2018 to go through the procedure once more. It was awful to go through it again.”

“You know what to expect second time round, but that makes it scarier – because you know what to expect,” explains Josh.

“Josh had a horrible turn in his second operation. His blood pressure dropped, he wasn’t responding, his bed was surrounded by senior nurses trying to bring him back around. For about 45 minutes, it was very scary,” Dawn describes.

Patient Josh outside Panther

The wards

“For Josh’s first operation, we were in the old Peter Pan ward,” says Dawn. “After the JNA returned, GOSH had just opened the new Premier Inn Clinical Building, (part of the Mittal Children’s Medical Centre) and we felt a lot more at home and comfortable in the surroundings. I do believe that charity funding into renovating buildings is important. The new wards created a more positive environment generally. Staying in hospital can feel daunting, overwhelming and very frightening and anything the environment can do for patients and families is definitely a massive help.”

“I could tell straight away I was in a bigger room – even when I felt a bit out of it and couldn’t really look around,” Josh adds. “It was much brighter, with a bigger bed. It was just so much better. I had remote controls to my bed which meant that I didn’t have to ask nurses to push me up into a comfortable position. It was easier the second time to lie completely flat and still for four hours after they starved the tumour of blood in preparation of the operation. I had an overhead TV and so could feel a lot calmer and more relaxed as I lay still. Although these things don’t sound like they should make a difference, they do. You don’t realise how important being comfortable is when you are preparing for a big operation, both mentally and physically.

“I think that charity funding to build new wards or renovate old ones is very important. I have seen and understand that there are kids in there that have much more complex conditions and stay in hospital a lot longer than my few nights each time. To have a room that enables big family visits must be a great comfort. I’d urge anyone to think about the changes that donations can make for a seriously ill child who has had no choice but to spend days, weeks or months in a hospital bed.

“Although it sounds like a luxury and not important, it was also a massive relief when I saw that I had an ensuite bathroom because I could use the facilities without leaving my room in my hospital gown.”

“I agree,” continues Dawn. “My favourite part was the en-suite bathroom. Not as a luxury – it makes a huge difference to parents who have anxiety about leaving their seriously ill children, even for a minute. Josh had lost a lot of blood during his operation and soon after being transferred to his room he went into hypovolemic shock and became something of a medical emergency. As a mum this was a very frightening experience to go through and although he responded well to the nurses’ and doctors’ speedy actions, I was very nervous about leaving him alone, even to pop out to the loo. Thankfully, I didn’t have to.”

Feeling inspired by Josh and Dawn’s story? You can donate to GOSH’s redevelopment programme, to support the design, construction and fitting of new buildings and the renovation of older areas to give our patients the best care and experience possible. Learn more here.