Skip to main content

Epstein-Barr Virus

Grapic of the Epstein Barr Virus under a microscope.


Glandular Fever

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.

Communication Passport

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. 





Comments

  1. Anon12 February 2017 at 05:58

    What a fantastic blog - such a blow-by-blow record of the battle. Luv ya xxxxx

    ReplyDelete
  2. @SarahLou12 February 2017 at 11:03

    Thank you for your kind words. Glad to have you along with us for the ride.

    ReplyDelete

Post a Comment

Thanks for your comment. We appreciate having you along for the ride.

Popular Posts

Missing Education due to Illness

The Importance of Attendance If you read any news articles on education, correspondence from your child’s school, or are simply clued up on parenting then you will know the importance of school attendance. Schools place a great deal of focus on targets and will often offer incentives and competitions to encourage and increase attendance figures, but what if your child has a serious illness. What happens if they really are not well enough to attend school. What happens then? Attendance targets at Ryan's school are currently set at 95% attendance for the school year. Therefore realistically your child can only miss 10 school days due to illness. Medical appointments such as GP or Dentist do not count, but you are encouraged to make these appointments outside of the school day where feasibly possible. If your child consistently misses school, even if it is only one day a week, that equates to 39 days over the school year. Even missing one day in a week results in pressure on the ...
11 comments
Read more

Questions to ask after Cancer diagnosis

Cancer Sucks I have shared with you Ryan's lymphoma journey where we have talked about the ups, the downs, the protocols for drugs, the side effects, but I realised recently I have never shared the questions. This post is all about what to ask when you receive a diagnosis of cancer. Receiving a cancer diagnosis is never ever going to be seen as good news. It can never be dressed up or made pretty. It is devastating, it is gut-wrenching, it is life-changing. There is so much information to process you will not think of the questions you need to ask or you will have hundreds of questions you want to ask all at once. These are just some of the questions you can ask once you have processed the news, in order to gain a better understanding of your fight ahead. General Information What type of cancer do I have? Where is it located? What are the risk factors for this disease? Is this type of cancer caused by genetic factors? Are other members of my family at risk? What lifestyle c...
5 comments
Read more

Chemotherapy Cycle 5

What is Normal? With this being our penultimate cycle of chemotherapy I have had several family and friends comment to me “oh I bet you can't wait to get back to normal”. This has really thrown and upset me because it seems to come across that they have failed to comprehend the fact that we have 2-3 years of maintenance ahead and at least two more general anaesthetic surgeries. Not to mention physiotherapy as it is expected Ryan will take 12+ months to heal from the effects of being poisoned from the inside out. Normal is long way off yet. While everyone else appears to all be getting excited that Ryan is coming to an end of his chemotherapy protocol treatment, Ryan himself is becoming more and more tired with the cumulative effect of the onslaught of the chemotherapy drugs and is spending long periods of time in hospital after each cycle with infections due to his impaired immune system now as a result. Ryan is far from excited. Ryan is exhausted. We still have one more cycle t...
6 comments
Read more

Worrying About the Future

  Worrying About the Future. Ryan said to me recently. "Childhood gave me Autism. My teens gave me cancer. What will adulthood bring?" Big worries for someone so young. So much pressure and conditioning are placed upon us about the importance of education and the set path that the majority of us will take through the system to university and/or the job market. What happens if you do not follow that path or miss so much education that the path is no longer open to you. How do you plan for the future? What options are there available to you? Ryan was excluded from his primary school in year 2 and I home schooled him for a year while we worked with the Educational Psychologist to find a placement that would suit his complex needs at the time. Due to his speech, language and communication difficulties the decision was made to withdraw him from Welsh-medium education and focus on English only which meant our choices were limited in the area of Wales that we call home. We...
Post a Comment
Read more

Peritonitis

Emergency Surgery On the morning of 25 October 2016 Ryan was complaining that his PEG feeding tube was unbearably painful. He was due for a review anyway that day at Velindre Cancer Centre and a PEG specialist nurse came for to look at Ryan. She said the site was a bit weepy and raw, she thinks he possibly caught or pulled it in the night. She is confident that it is fine and she also gave it another good clean.  A week on and we are back to square one. The district nurse came out on Monday 31 October 2016 to advance (turn) the PEG tube as is needed each week after the first month. The nurse was unable to move the disc and caused Ryan an incredible amount of pain. We ended up having to go to the Teenage Cancer Trust ward in Cardiff, where two gastro nurses met us and spent the best part of an hour, torturing Ryan while they 'forced' the PEG to move, which they eventually did. Or so they thought.  The following week, 7 November 2016, the district Nurse came again to the ...
7 comments
Read more