Ash

We found out about Ash's condition in the summer 2024.

He had been complaining about pain in his knee and we thought it was growing pains or maybe he hurt it while playing in the park with his friends. That summer he spent a lot of time trying to get better at football so he could join the team when he went back to school that September.

The pain went on for 6 weeks so I called the doctor and they told me to take him for an X-ray.

At first, they thought it was a fracture but the day after the doctor told us it was bone cancer and to expect lots of appointments in London….we were absolutely devastated, our lives turned upside down. It quickly spiralled out of control with appointments.

In November 2024 he started chemo which was split into two parts and lasted until 4th July 2025.

Before they started chemo, we met the surgeon they told him because he hadn’t started puberty, he had the option of choosing whether he wanted to go through with a fertility thing where they take a small sample of his testicle and freeze it and if it’s possible in the future, they might be able to get some sperm for using stem cells -this would possibly give him the chance to have children in the future, he had one day to decide.  

When we spoke to the surgeon, they asked Ash what he enjoyed doing where he said…computer games and football. The surgeon told Ash ”If you really want to play football then you should consider an amputation because that would be the only way you would be able to play contact sports.”

Ash decided to go with an implant and give up football!

In between his treatment he had the surgery on his leg on 27th Jan 2025 where they removed 17cm from his knee upwards put an implant in the mid part of the femur and down into his tibia (this has 4” of growth in and they can extend it a few mm every few weeks).

Once Ash had the surgery he was doing amazingly, walked around his room the day after his surgery, it was amazing to see!

A few days later a physio came to see him and had a cold.

Ash started to suffer massive fevers where they had to put him on lots of antibiotics because they didn’t know what was causing it. I thought it would be obvious seeing as he just had major surgery. They did cultures and a week later they said unfortunately Ash caught the flu, so they stopped all antibiotics. The problem is the flu was masking the infection.

We were there for three weeks and in the meantime the infection was brewing because they had stopped the antibiotics.

Ash was transferred straight back to UCLH to start chemo again and he was so poorly. We spent a week there and then finally went home for his two-week break. A week into that and he was rushed back to hospital at the Conquest where they started antibiotics again because he had a massive infection in his leg. They rushed him back to Stanmore to have his leg reopened and washed out…he had sepsis!

Ash and I were there for another three weeks, antibiotics from then until July and had to go through the whole thing again, learning to walk🤦🏽‍♀️

He finally finished his treatment on July 4th 2025.

He had 6 months cancer free and in January he had a regular check up and CT of his chest where they told us he had two tumours in his chest, one in each side…. We were devastated!

He started chemo again at the end of January where this chemo made him very sick and he was in hospital at the end of every single treatment for a week at a time stuck in hospital with Febrile neutropenia, blood transfusions and line infections, so more antibiotics!

Thankfully he got to the end of treatment on 19th June 2026.

His next surgery was on his right lung which was in July, they removed the tumour and part of his lung… he did so well and came through that so quickly.

The last surgery was 25th August 2026 then had the same procedure and was home 3 days later and has made a full recovery. In the meantime we have seen some surgeons and had X-rays on Ash's leg and we have been told they the cement round the implant in his knee has cracked!!! Which means he will have to go through more surgery and have the top part replaced 🤦🏽‍♀️

Honestly it's a nightmare. Ash has taken the news well and has been doing as much as possible.

Ash has always been a bright and clever young man and he has taken everything that has happened to him so well and never complained about anything, even on the really bad days. Ash is very much the sort of person that doesn't like a fuss and he doesn't think he deserves any special treatment even though he really does deserve it.