From three relapses to over four years in remission

“On the 17 August 2014, we were told that Josh had leukaemia.

“It was devastating, I never thought we’d hear that.

“The next day we were taken to our local children’s hospital and Josh started chemotherapy a day later. He was so poorly he couldn’t move.

“We were told that treatment for ALL would be three and a half years. That was hard to get our heads around, it’s an incredibly long time.

“We thought we would be in hospital initially for about six weeks, but after two weeks we were allowed to return home. That was scarier than being in hospital, as it meant learning how to deal with medications ourselves.

“Unfortunately, Josh developed acute pancreatitis a couple of months after starting chemotherapy. This was nearly fatal for him, but he pulled through.

“During that time, he was also found to be high-risk, so he had to move onto higher intensity chemotherapy for the first nine months. It was a gruelling time for him. He then moved to maintenance chemotherapy.”

“Josh wasn’t well over Christmas 2016, and by January 2017 he had pain in his arm. We then found out he had relapsed in his bone marrow.

“We’d almost done two and a half years of treatment – to hear that he’d relapsed at the stage was absolutely devastating. I can’t begin to tell you how that felt.

“The plan was then for Josh to have a bone marrow transplant. He was very unwell and suffering with ulcers and mucositis in his oesophagus. Due to this, he couldn’t have his transplant until mid-April 2017.

“Josh’s younger brother, Luke, was a 10/10 match and we had opted to freeze Luke’s umbilical cord at birth, so the team were able to use stem cells from the cord, as well as Luke’s bone marrow for the transplant.

“Luke was only a year old, and Josh was seven – it was a very difficult time with both boys having treatment, but it felt precious in that Luke was giving Josh this lifeline.

“The transplant was challenging, and we were in hospital for eight months. I remember looking at Josh and thinking how weak he looked.”

“Things seemed to improve, and Josh was able to ring his end of treatment bell in September 2017.

“We had assumed that would hopefully be it and we could get on with life. But he started to gain a lot of weight and his personality changed. He had a lumbar puncture and we found out the cancer was in his spinal fluid – he had relapsed again.

“At this point, Kymriah, a type of CAR T-cell therapy (which modifies a patient’s immune system cells to attack cancer cells) wasn’t licensed yet. There were a couple of clinical trials running, but we weren’t sure if Josh would be eligible.

“The team were talking to doctors everywhere to find out what might be available for Josh and that’s when GOSH was first mentioned. We found out there was a trial that Josh could be eligible for at GOSH.

“Our decision was a no-brainer. We had done everything to get so far and there was no way we couldn’t try.

"The CARPALL trial at GOSH [funded in part by GOSH Charity] was our best option. It was known to be less toxic, and we didn’t want to put Josh through anything more than we had to, given how bad his treatment had been before.

“We didn’t know much about CAR T therapy beforehand, but we’d seen it on the news. Our local hospital was in constant contact with Professor Persis Amrolia, who was the brains behind it all at GOSH."

“We travelled down to GOSH and Josh had his T cells taken. Everything was brilliant – we couldn’t fault the staff or the information we were given. We were due to come back down in January 2018 and had planned to be there for a minimum of six weeks. However, after a viral swab came back positive, we were told that Josh couldn’t have treatment – he had to be well.

“Josh had to slowly go through more chemotherapy because he needed to stay well. Eventually we were able to travel to GOSH again in March 2018. The team ran so many tests and got to know him. He had physiotherapy to ensure he was as well as he could be, no one could have done anything more to get him ready.

“He had a week of conditioning chemotherapy and his hair started falling out again. He shaved it all off himself which he really enjoyed.

“By the end of that week, he was well enough and started the CAR T infusion in March 2018.

“Josh was on GOSH’s Fox Ward for about seven weeks in total. We were well informed as to everything that could possibly happen, good or bad.

“He had one temperature and the rest of the time he felt right as rain...He was happy, well and playing on his Xbox.

“It was Luke’s and Matt’s birthday around this time and Luke came down to London to visit. He couldn’t come on to the ward, but I remember Josh looking out of his window onto Great Ormond Street below where Luke was stood waving. It’s a special memory.

“After our initial seven week stay, we continued to visit GOSH every six weeks, then every three months, every six months and then yearly.”

“The Play team were brilliant with Josh. They would sit and chat with him and he made me a Mother’s Day card with their help. He was so proud of himself.

“Due to his illness, Josh only did 25% of primary school. He had a wonderful teacher in GOSH. Matt and I were able to grab a quick lunch together while [they] did science experiments.

“I saw psychological services at GOSH and had a couple of calls with them as I was finding things particularly hard. They were a good support, and it was on my terms. They understood how much I wanted and how much I needed.

“I’m still in regular contact with the staff at GOSH. They were and still are my go-to people for anything I need, no query is too small."

“Over the summer of 2018, Josh was back in our local hospital with a strange chest bug. Through various investigations, they found leukaemia deposits growing at the back of his right eye. We couldn’t believe it and were terrified it was another relapse.

“Fortunately, the deposits were isolated to the eye and hadn’t spread anywhere else, but it did mean Josh had to have his eye removed.

“At the time, I didn’t think we had made the right decision, but he had lost all the vision in his eye and after pathology, we were told that nothing could have saved it.

“Adapting was really tough for him. He was only eight, it was a huge thing for him to cope with.

“He’s worked very hard, and you wouldn’t know he had an artificial eye now.”

“Josh is 14 now and has started secondary school. We were so scared about him going because he hadn’t had much time in primary school, but he’s had a really positive three years so far. He loves football, theme parks and the computer!

“He’s four years in remission. We just want him to be happy and healthy, to live like other children and have nothing hold him back.”

“We have GOSH to thank for everything. Prior to the trial, during it, and ever since, we couldn’t ask for anything more. You never think cancer will happen to your family. You’d hope that there would be enough out there to help save your child, but without research, new treatment developments, and funding, we might not be where we are today.

“Josh wouldn’t have had the opportunities for the future he’s got now. The more GOSH do and the more money that goes towards research, the more options there are for children like Josh. Without the CARPALL trial, we wouldn’t have our son.”

Together with the UCL Great Ormond Street Institute of Child Health, GOSH is one of the few places in the world where research and clinical care happen side-by-side, quickly translating breakthroughs in the lab into real benefits for children with cancer.  

GOSH is already home to many breakthroughs, and the Children's Cancer Centre will allow even more groundbreaking research to take place. 

Find out more about the centre and how you can help build it by visiting our Children’s Cancer Centre page.