The story of Darren
Hi there I’m Darren or Daz to my friends and I’m known as the Ameloblastoma Warrior. This is a exceptionally rare but benign tumour that grows in the jaw .
I’m sure your wondering how I acquired the name so I’ll tell you . In April 2019 i registered with a new dentist as I had had a great fear of them and not been for over 27 years. I never knew there was an actual Phobia of dentists but there is and it’s quite a common issue for many people of all ages. I’d had a bit of tooth ache and couldn’t bear the pain any longer.. As I was being examined the dentist noticed a dark mass as she removed a wobbly tooth . Let’s take an X-ray and look at it closer she suggested. She took an X-ray and said she’d “never seen anything like it before”. The dentist said that as a matter of caution she’d send me for a referral to a specialist and after agreeing to this I left feeling quite nervous. I had no idea what was to come next as I was kept waiting for 5 months spending every day wondering if it was serious as I’d heard nothing. I tried to convince myself that no news was good news , but deep down all I could think about was it’s bad news and I started to think the worst case scenario’s.
On the 19th December 2019 I was referred to Charles Clifford Hospital for a biopsy and two teeth extracted. Following this on the 16th Jan 2020 I had a review at Charles Clifford Hospital. It was discovered that the first biopsy did not get enough tissue for a full diagnosis, but it definitely wasn’t just a abscess or a cyst. The same afternoon I received a call saying that I was to admitted the next day as a day patient and I had to have a second emergency biopsy. Whilst under anaesthetic i had 2 more teeth extracted and the removal of my lower jawbone.
On the 30th Jan 2020 I went to find out my diagnosis from the day surgery and then it was then that I was told that I had Ameloblastoma.Tumour.
I just wanted the floor to open up and swallow me. Id thought of everything it could be but never once imagined it could be a life threatening disease. I was healthy and strong and apart from a bit of toothache there was nothing wrong with me and this wasn’t real
But there was, and it was real and it was happening to me. As my Dr told me it wasn’t Cancer but a tumour that needed to be treated aggressively I just burst into tears .
On the 13th Feb 2020 I went back to hospital and saw two specialists who discussed several options for the removal of the tennis ball size tumour . A date was set and I would await surgery on the 20th March which would involve the removal of my full lower jaw and quite possibly most of my teeth.
The surgeons were amazing, they answered all my questions and showed me a 3D model of my jaw built from my CT scan.
As the days went by I knew I had to do something to help me cope and understand what was going to happen to me. I found a charity called Bone Cancer Research Trust who didn’t really know much about Ameloblastoma, but they said they would support me through this diagnosis and suggested joining an Ameloblastoma Facebook group. Of which then lead me to starting my own blog on Facebook called ‘Humour with a Tumour’. Knowing that there are groups like the Bone Cancer Research Trust and Ameloblastoma groups to confide in and share knowledge of this condition really takes the weight off your shoulders. I spent days contacting some people who have experienced what I was going through, and their advice was priceless.
I was advised not to eat anything too hard as there was a likelihood that I could break my jaw before surgery.
I was unable to eat solid food at the time as the tumour has made my jaw so fragile. I was informed by my surgeon that after the surgery I would not be able to eat solid foods for weeks after the surgery. How wrong they were !!
I was told I may have to be fed through a nasogastric tube and also have a tracheotomy to help me breathe. A lot of people I had spoken to had had a surgery where you have a bone graft from their fibula bone to replace the missing jaw. I am undergoing something called bone distraction osteogenesis. It is hoped this will encourage my jaw to grow back by stretching the two pieces of bone .
I was informed that they would be removing my jaw below the hinge joint and then inserting what looks like Meccano to the bits of the jaw that is left. There would be two screws out of the back of my neck and they would have to be turned with a small screwdriver twice a day enabling the new bone to grow.
My advice to others would be to talk to people and don’t be scared to face it the way you want to, not how you think everybody else would. It’s your diagnosis not anybody else’s. Its personal to you and having a good support network around you is important. I’m raising funds for the Bone Cancer Research Trust as a way of raising awareness and helping me cope. I set up a special fund called the Darren Wilkinson Ameloblastoma Warrior Fund where all monies raised by me can be sent straight to the Bone Cancer Research Trust.
I feel after being diagnosed with a benign but very aggressive tumour that there should be more support available to patients when visiting the dentist. I believe that dentists should incorporate a 12-monthly appointment with an X-ray for every patient, so that things like slow growing tumours could be discovered before they take over someone’s life and be potentially life threatening. I have s current petition running on the change.org platform that is gather momentum but needs a lot more support.
I still have moments of anger and hurt at the cards that have been dealt to me and it is the unknown that particularly worries me. I have faced more many life saving challenges since my journey began and I’m not done yet .I have still got more surgeries to overcome , but I’m fit and strong and much more equipped to do so with support from family and friends.
If I could reach out and save the life of just one person through telling and sharing my story with you all , then I’ll be certain I did all I could. If I can be as inspirational to others as they have been to me, then I’ll be happy. I’m determined to get out there as soon as I can, to show people that we are going to beat this thing.”
Ameloblastoma Will Not Win .
Thank you
Darren Wilkinson.
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