James's story

James was diagnosed with neuroblastoma after a family holiday in Wales, when he was just six months old. Thankfully, he was given the all-clear in February 2020. His mum Lisa shares his story.

Initial symptoms

‘We were told that James had a 7cm mass in his abdomen. He was only six months old.’

We first noticed that James was a bit more sweaty than normal in June 2019, however, we simply put it down to the weather warming up. While we were on holiday in Wales that August, it was nowhere near as hot as it had been, yet James was still having sweaty episodes.

Friends we were staying with suggested we get him checked out - they had four boys of similar ages to our three boys and had not experienced sweating like James’s. They said that something didn’t seem quite right, so we took their advice. As soon as we returned home, we called our GP.

The GP was brilliant and gave James a full examination from head to toe. When she came to his tummy, it was then that she suggested we go to the hospital. It could’ve been that he just needed a poo, or it could be something more concerning. She didn’t want us to go home, but to go straight there. We were seen straight away, and James was booked in for an ultrasound first thing the next morning. At this point, I was quite calm. But that soon changed.

Discovery of a 7cm mass in James’s tummy

Following the scan, we were told that James had a 7cm mass in his abdomen. He was only six months old, so it was a huge lump in his tiny body. I remember the consultant saying, “I’m really sorry, it’s not good news. We suspect that James has cancer.” You never imagine that your child will have cancer, so it was a huge shock for all of us when we heard these words.

“(Our consultant) told us that it looked like neuroblastoma, but thankfully, the least serious type - Stage 4s. Having never heard of neuroblastoma before we didn’t quite know what to expect. ”

James was referred for a CT scan straight away - he needed to be sedated which had its own problems. It was a real struggle to get the cannula into his little hand and the sedative wore off quite quickly, so he was quite wriggly during the scan.

Our consultant Dr Ramya was absolutely amazing. She told us that it looked like neuroblastoma, but thankfully, the least serious type - Stage 4s. Having never heard of neuroblastoma before we didn’t quite know what to expect.

As James was under the age of one, we were told that he would be put on a ‘watch and wait’ strategy. Stage 4s neuroblastoma can often disappear without treatment, but he would be closely monitored in case of any changes to his symptoms.

Weighing up the risks of surgery for someone so small

James started his first round of chemotherapy in September.

Unfortunately, his symptoms did get worse. He was still having what we affectionately called ‘sweaties’ and they were happening a lot more frequently. His heart rate and breathing also increased.

Having attended hospital a couple of weeks after his diagnosis, we were admitted and James was given medication for the blood pressure. It helped, but the consultant suggested we try chemotherapy.

At the end of September, we started the first round of chemotherapy which took three days and he would have a second round two weeks later. James had a scan after the second round and sadly the chemotherapy it hadn’t affected the size of the tumour.

Next step was to try a different chemotherapy which he received at the end of October. It lasted for five days and he would receive his 4th lot of chemo two weeks later. At this point, I really wanted James to have surgery to cut the tumour out there and then, but there were huge risks in this for someone so small.

However, before it was time for his 4th round of chemotherapy, James caught a sickness bug and was so poorly. He was more unwell with this than the cancer or any of his treatment. He wasn’t sleeping, wasn’t drinking and we were put into isolation on the cancer ward. It was then that I thought we were going to lose him.

He was so unwell from the bug that he was too weak for the second round of chemotherapy. The risks of having chemotherapy now outweighed the risks of having surgery, so James was booked in for the 17th December.

We were given the worst-case scenario from the surgeon, James may not make it through - and it was then that it all really hit me. We’d overcome so much but hearing that was incredibly painful.

James is discharged in time for Christmas!

James is now a typical, mischievous one year old little boy!

Then we had some good news.

James’s surgery was over in half the time they expected, and they were able to remove the whole tumour without damaging any other organs.

We were discharged before Christmas so we could be with all our family. His symptoms disappeared overnight and he’s now a typical, mischievous one year old little boy!

In February 2020, James had his end of treatment appointment and his scans and checks were all clear. We’ll be under the care of the hospital at least five years, but on 6th May he’ll be six months post chemo!

It was four and a half months from first being admitted in Poole to James having surgery with numerous stays in hospital during that time. I really don’t know how we got through it.  I feel like we had a much easier journey than a lot of people have had or are currently experiencing as ours only lasted six months.

“I’ve often been told I can be over-positive but I really feel my attitude helped me deal with everything we have been through.”

James’s developmental skills appear to have been slightly affected because of his cancer treatment. His fine motor skills are amazing for his age which we think it due to being stuck in a hospital bed for so long, however he’s not quite walking yet.

Hopefully being in isolation together for 12 weeks means that I’ll witness his first steps!”

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