Matthew suddenly deteriorated in one weekend. I had taken him to our local A&E on the Saturday and we had been sent home with antibiotics for an ear infection.
On Sunday morning I couldn’t wake him, and it was later we found out he was having back-to-back seizures. We were rushed to hospital by ambulance back to A&E, and due to his presenting symptoms, he was scanned straight away.
It was just a short time later that we were told Matthew had a brain tumour and that we would be going to The Royal Manchester Children’s Hospital straight away for emergency surgery.
However, when we arrived Matthew was so unstable that he the surgeons were not able to complete his operation and he was taken to the Paediatric ICU for 10 days, before he returned back to theatre to have his surgery completed.
Whilst Matthew was on PICU we were told that Matthew had a very rare cancer called ETMR – there was no specific treatment protocol but Matthew would need to start chemo as soon as he was well enough. This turned out to be 2 weeks after his last surgery, and this was when we were moved to Ward 86.
After his first cycle of chemo Matthew’s oncologist showed us a research paper which confirmed the treatment, he was having wouldn’t provide him with long term survival. The decision was made to stop the current treatment and instead Matthew had very high dose chemotherapy, a stem cell transplant and 30 sessions of proton beam therapy.
Matthew was coping extremely well with all this until he unexpectedly had a stroke in January of this year, for which he needed further surgery and a stay in the high dependency unit.
There have been other admissions both during and after treatment but currently Matthew is doing really well.
He has had to learn to walk and talk again, and he had the needs of a new born baby. Most children diagnosed with ETMR will not survive past their 4th birthday, Mathew starts school in September and we could not be prouder of him.
Thank you for what you do for oncology children and their families, Matthew’s rainbow blanket is a favourite of his and something that connects all these lovely children together. His Milly Bag is a staple in our house, not just for hospital, but anytime we go away.
