Danielle’s Story

Danielle

My name is Danielle and I have a genetic illness known as Turcot Syndrome. This is caused by a genetic fault. This gene fault makes me very vulnerable to making multiple cancers through my life.

I have so far suffered four kinds of different cancers already throughout my life which have required treatment involving chemotherapy and Radiotherapy as well as a Bone Marrow Transplant.

I was eight years old when I was diagnosed with a Brain Tumour known as Medulloblastoma in 1998. Doctors first thought that it was migraine!

I was first treated at the Atkinson Morley hospital where I had an operation to remove my Tumour. This was when I was told by my parents that I had cancer. I was then transferred to the Royal Marsden hospital where the next steps of my treatment would take place, but being eight years old I did not understand what was really happening.

I was told by my mum that I was going to have Chemotherapy and Radiotherapy and that this would make me lose my hair. Lose my hair! I remember crying about this as I had really long hair at this age and to lose it was really upsetting, but my mum told me that it will grow back in time. So the days came when I started my treatment and very quickly afterwards my hair indeed started to fall out. My parents and family members brought me some beautiful hats and bandanas to wear so I did not feel so bad and was also given a wig which was not very comfortable to wear as it was itchy and hot but was better than nothing. After six months of chemo and radiotherapy treatment my course of treatment was finished. My hair did start to grow back although it didn’t feel as thick as it ever was before.

Treatment over I began to rebuild my life, but unfortunately two years later in 2002 I began to be unwell again and was taken to the doctors who said it was glandular fever! Eventually after pushing for a blood test which I finally had the doctors found out that it was something quite different.

This was when I was diagnosed with Acute Myeloid Leukaemia (AML). Again this meant more chemotherapy was needed to treat it and also meant losing my hair again when it had only just come back. I also had a Bone Marrow Transplant. This was when tests were done to find a suitable donor. They found that my brother Adam was a suitable donor and he was brilliant when it came to having my BMT.

After having my BMT I was allow home and after many months at home to recover, I was finally allowed to go to school when I felt I could. At this point I remember just having one or two hair’s on my head and came home from school one afternoon and my mum saw that one nit was hanging on for dear life, it had definitely chosen the wrong head to seek a new home!! Luckily I did not need to go through the horrible nit treatment I did when having long hair!

During my last year at secondary school in Year 11 in 2005, I was again not as well as I could be. This was when I was diagnosed with colon and rectal (colorectal cancer). I was treated by having major surgery resulting in having an ileal anal pouch made and a stoma for a year whilst it healed. I had to wait four months before they treated me. This resulted in needing more chemo in tablet form due to the illness spreading to my lymph nodes. This cancer was initially thought by my doctors to be piles!

My mum and dad demanded that the doctors carry out more tests when I had symptoms because the doctors were in no hurry to operate or treat me. I was 14 at the time and they said I could wait two more years before doing anything! I am very glad my parents did push the doctors as they were wrong and I would not have made sweet sixteen if they had waited. This was when finally I had a diagnosis of Turcot Syndrome through genetic testing.

To add to all the woes of my story I contracted bacterial meningitis after having my peritoneal shunt moved higher into my pleural area before my colon surgery. I now have temporal lobe epilepsy and due to the effects of the radiotherapy I have had, I am also now profoundly deaf in both ears. This is one of the late effects I have got from having radiotherapy all those years ago when I was 8.

I am now 20 and since I finished school when I was 17 I have been to college and have done a course in Health and Social Care and have come out with 2 A levels with Distinction, Distinction. I have also completed a business level 2 courses and got a pass. After all of this hard work I am unable to work due to the epilepsy and hearing loss and due to my general health issues, but I hope to one day fulfil my dreams eventually, and being able to work is one of them.

I say that throughout my life so far it has been very tough at times, it has been socially and physically a struggle and at times I felt a lonely road due to not knowing many people who have been through similar experiences. My confidence and self esteem has often been very low at times but as I have grown throughout the years I know that good things can happen too and although life can be fragile, you have to make the best of what you have and don’t give up on the challenges along the way.

It is now two years on and unfortunately I have been ill recently with gallbladder cancer this time. I needed a further liver resection to check the cancer had not spread but thankfully everything was ok. I am still unable to work but I have now have a boyfriend and get taken out by carers twice a week. I take every day as it comes and enjoy my life to the full, every day is a bonus. The opportunities that Teens Unite offer for people like me is invaluable. Thank you for all the hard work that you do.