The Epstein-Barr Virus (EBV), which causes Glandular Fever, is still proliferating in Ryan's immune system and is what is driving his head and neck - NK/T-cell lymphoma cancer. The Immunology team looked at Ryan's DNA to try and work out why his body has not been able to kill off the EBV from 2 years ago. They wonder if he has an underlying immune problem.
They also wanted to know if we as a family have any Asian descendants in our history as this type of head and neck cancer usually presents in Asian men over the age of 50 who have a background of alcohol and tobacco addictions. Ryan is Caucasian, aged 14 and has never drunk alcohol nor smoked.
90% of the population have been exposed to EBV. Like chickenpox, it is in our memory cells, but for Ryan, it is still a live virus so they are tracking it through his plasma to know if they are able to successfully kill it off, with the radiotherapy and chemotherapy.
If even 1 cell remains in his plasma then the cancer could re-grow. He has a 69% chance of Chemo being successful at killing off the EBV and cancerous T-cells and a 40% chance of relapse, which I thought was quite good at less than half, although I would like the 69 to be a bit higher personally.
At Ryan's first, follow up clinic on 2 November 2016 he was making positive progress. The tumour in his throat had almost gone and the tissue was looking almost visibly normal. Big yay. With regard to lymphoma cell proliferation in his immune system, the EBV DNA in his plasma is currently at 1000. Ryan's consultant (DC) said this is the marker they will use from here on as his tumour load. Ryan will be given the all-clear when this figure reaches 0 (zero) and will be given cured status when he has been at 0 for more than 6 months after chemo.
We have a psychologist involved too who has helped us create a 'communication passport' which has gone into his medical notes. He has a playlist on his phone that he either listens to on headphones or they can play on speakers during treatments and tests. They have been wonderful at accommodating him. Appointments can take twice as long as most other peoples but everyone is so laid back. He swears at the nurses sometimes but they say they are all thick-skinned.
I don't think there is even a word for how tired I am. I am worried and lost, a mum who battled for 2 years to get doctors to see if there was something more serious going on with my darling son's chronic illness. Medical professionals were convinced his sustained illness was the lingering effects of Glandular Fever, but something kept nagging me that it was something more. There is a saying, a worried mum does better research than the FBI.
I don't want it to be this but here we are and we will battle to the bitter end and kick cancer's butt. Ryan and I live away from home during the week for treatment while my hubby works looks after the house, dogs and our eldest son. Being a split family is so hard it hurts, but we will make it work. We have to make it work. We have to win.