JOSH'S STORY

In February of 2021, Josh’s parents noticed he was getting very pale. What was originally thought to be a virus, turned to a bladder infection and slowly descended from there. Just a few days later, Josh started vomiting and losing his balance. He was taken straight to A and E, given a blood test and diagnosed with leukaemia just two days later.

Josh’s family all found it incredibly hard when Josh became and wasn’t until a few weeks in to treatment that she started to realise just what the diagnosis was, what it meant for their family and how quickly life was going to change.

It all got a lot harder when Josh started to show the effects of treatment. He lost 25% of his body weight within just a few weeks and had an NG tube attached to try and put the weight back on. This was devasting for Chrissie who had to watch her once healthy boy struggle with treatment. She told us ‘he looked like a skeleton, and that was I think the hardest point for me and for my family.’Josh faced multiple treatments throughout his time at the hospital and with leukaemia specifically, the process is split into 5 stages. Chrissie told us:

‘The first phase is something called induction, which is when all inpatients have to stay in hospital the entire time. During that time, Josh had weekly IV chemo which was called doxorubicin. He also had vincristine, which he continues to have now. He then also had a chemo called PEG. Now, the PEG is administered via an injection into the leg, and that was very stressful for him. The peg is actually what caused really bad side effects for Josh. He didn’t have an immediate obvious reaction. But what we didn’t realise was that the PEG was developing a blood clot in his brain. We found this out six weeks into treatment when he had a seizure after he came in for a lumbar puncture .

He was rushed into the back of the ward, and they did an MRI which showed that he had an extensive blood clot in his brain. That evening, he had a seizure that wouldn’t stop, and he had to be sedated, put on a ventilator and taken to the intensive care unit, which he was there for a couple of days. This meant that he had to have an extra treatment on top of all the other treatments, which was blood thinning injections twice a day for six whole months. Now, if you consider that he had a needle phobia, that was really, really tough. It really affected his behaviour. He just wasn’t Josh for months, and it was really tough”

The next phase is called consolidation, and this also includes its regular chemo so mostly into his port but then also some oral chemo, which is called Mercaptopurine and also one called Methotrexate. He also had medication for blood pressure and potassium levels which kept getting low as well as vitamins, just to try and keep him strong.

Josh remained resilient and accepted his treatment very well. His parents had decided not to use the actual name of his diagnosis and instead told him that his blood was poorly, and the doctors were there to make it better, so as not to upset him. To begin with, he was okay with his injections and put on a brave face, but slowly started to develop a phobia towards them, especially the porta cath needle that had to sit in his chest. It was an incredibly distressing task for Josh to sit through and has been an impactful part of Josh’s journey throughout his treatment. Chrissie said recently that ‘it’s only been sort of the last, I would say, three, four months where he’s been able to sit still and let them put the port needle into his chest without any, any kind of fuss. He’s so brave. But it has it’s taken him a long time to be able to do that.’

We then entered what’s called interim maintenance. That’s a point where they lessen the medications a little, like a small break from everything just because of how intense induction and consolidation is.

Next we went into delayed intensification. As the name suggests, it becomes intense again. So, he was having weekly IV chemo and some of these IV chemo’s take up to four hours to go in. So, he would be on the drip for at least four hours and would need fluids at the same time as well, just to try and keep him as well as possible. He was still on the vitamin D; the potassium and he was still on the oral chemo’s as well. You can imagine just how intense everything was for him.

Finally we went into maintenance which started in September 2021. They do blocks of 12 weeks with the treatments. So, Josh is in the third one now and there’ll be 12 in total. In this phase, he has two oral chemo’s which are called Mercaptopurine and Methotrexate. Then he still has a monthly IV chemo, which is Vincristine. Every three months he has a lumbar puncture, where the Methotrexate is put into his spine instead of orally and they also check to make sure that he’s still in remission. Along with that, he also has anti sickness meds, which he’s had throughout treatment. He also has a special antibiotic that they do every weekend which is like an anti-fungal infection treatment.

In 2021, Josh became a Kidscan ambassador, using his story to help raise awareness of childhood cancer and the need for new treatments. His mum told us;

‘It’s so important that gentle treatments are found because a child’s body is different to an adult’s body, and we’ve seen first-hand the life threatening and life altering side effects that these treatments can have.

The blood clot that Josh got from his treatment, not from leukaemia, but from his treatment for it, changed all of our lives. They almost killed him. We were very lucky that when that seizure happened, we were at the hospital already, it could have been a very different story if we’d been at home. The blood thinning treatment prevented it from getting worse, but the clot is still there. As far as we know, it’s stable at the moment.

We do see a difference in Josh now; he has a lower attention span, and he struggles to control his emotions at times. Because I think because of the mental impact of his treatment, but also an element of the fact that there is a clot in his brain that everything has had to rewire itself around it. It’s always going to be a worry for us whether it gets worse or whether it starts to bleed or, that’s going to be a constant thing that follows us for the rest of our lives.

I think that’s why it’s so important that they have gentler treatments because of the impact that it has on these children. Because it’s not just Josh, I’ve met other people who have had the same kind of side effects happen to them, or sometimes worse. I’ve been thrown into the world of childhood cancer, and I know long term survivors who are suffering with infertility and, and all sorts of things that just completely changed their lives because of the treatments that they’ve had to have.’

‘I’d like to say that this is obviously a really difficult journey. But it isn’t all completely doom and gloom. We do still have moments of happiness and I think that’s because of the resilience and the bravery of our children. Josh and Elena, they are incredible and also people that support you as well. We’ve had a lot of people around us who have been so supportive and those are the things that get you through it.