Katy Burnett
Posted by
Katy Burnett

My battle with CML

Katy Burnett
Posted by
Katy Burnett
28 Oct 2015

My story began in January 1998. I was on holiday with my family in America and I showed signs of a distended stomach – I looked like a pregnant 5 year old! My parents took me to my local GP in order get it checked out, thinking it was likely to be a prolonged stomach bug. Luckily, my GP realised that this was not just a stomach bug and he referred me to a local hospital who ran some tests.

January 1998 - Diagnosis

 

I was diagnosed with Chronic Myeloid Leukaemia in June 1998. I don’t remember the day I was diagnosed, I just remember being with my mum and my dad being informed over the phone shortly after my appointment. I was referred to Barts Hospital in London who had more resources to find out what was going on and what the options were. I was told the only chance of survival would be from a successful bone marrow transplant within a year of my diagnosis.

My family were tested to see if they would be a related bone marrow match. However, none of them were a match for me, not even my sister. We had to turn to the option of an unrelated bone marrow donor and start a lengthy process of searching the bone marrow registers for a match, with the support of Anthony Nolan.

Even though it was over 16 years ago, I still remember my time at Barts. I even met Carole Vorderman whilst I was there and at the time, I had no idea who she was!

My parents held a recruitment event in December of 1998 and recruited 80 people to the Anthony Nolan bone marrow register. However, there was still no match. In early 1999, a match was found but it proved unsuccessful when further tests were carried out and the donor was lost.

At last... A Matching donor!  

 

I was into my last 5 months where I desperately needed to find a match.

Just months before my 1 year since diagnosis, a successful match was found - a Dutch lady and the only person on the Anthony Nolan register who was a match for me.

Treatment begins

 

I was admitted to hospital and I was told I would be in for at least 8 weeks. My room was quite big and it had a porch-like room in front of the main door which was for anyone entering my room to make sure they had clean hands and were wearing the right things such as gloves and aprons.

I had surgery to implant a ‘hickman’ or ‘central’ line and this had three coloured tubes which came out the right side of my chest. The coloured tubes went various places in my body and allowed doctors to hook me up to the drips without constantly needing a cannula in my hand or arm.

I also had a bone marrow harvest done where they put me to sleep and in the back of my pelvis they had two needles inserted to withdraw a small amount of my bone marrow. I began having strong doses of radio-therapy and chemotherapy in the process causing dramatic hair loss and sickness. The drug therapies used today were not around whilst I was in treatment and the ones I was given were awful and caused further sickness. I shall never forget the taste of Cyclosporine…

On April 30th 1999, I had my bone marrow transplant. I was made drowsy for a few hours whilst the donation was given to me through a process similar to a blood transfusion. I remember it being a horrible process with many people in the room watching and feeling very sick.

During my stay in hospital I accumulated about 300 cards which we stuck all around my room. It actually got to the point where we ran out of places to put them! (The picture I have included shows my room after just a couple of weeks). I had a visit from some football players from Queens Park Rangers and I went sent toys and games by family and friends. My Dad also did video diaries of my time in hospital and every couple of weeks he would go into my school to show them. They would then send videos back either with messages or recordings of things like my school assembly’s.

Time to go home

 

The transplant was successful and after 8 weeks in isolation in Hammersmith Hospital, I was allowed to go home. However, this didn’t stop the isolation. I was not allowed to go outside without a mask on and I couldn’t just sit in my garden and play with my guinea pigs and I couldn’t even see my family or friends! I was essentially a prisoner in my own home - but it was better than being in hospital!

Eventually I was allowed back to school, where sadly I was bullied upon my return by some of the other children. Before I left to have my transplant, I had bleach blonde perfectly straight hair and when I came back, I had dark brown, thick wavy hair and some of the children thought I was a new student and used to call me a boy and various other things as a result of having such short hair! I hated school for a long time as the other children really brought me down about my appearance.

Relapse & further treatment

 

My transplant was successful but I relapsed in the year 2000 and was given a 'push' of white cells which would hopefully kill off the leukaemia cells which were fighting to get back in control. It worked and the leukaemia cells were kept at bay. However, the push caused me to suffer from GvHD (Graft vs Host Disease) in my muscles; joints; gut; mouth and pigmented on my skin. This severely impacted my self-esteem and body confidence. The GvHD stripped my muscles of flexibility and I accept that my dreams of becoming a ballerina were only ever going to stay as dreams.

During the first few years after transplant, I went to hospital either every 3 months or 6 months for various transfusions, platelets or Haemoglobin transfusions. I also went for BRC-ABL tests which measured my CML cell count. Eventually the cell count was so low I started to just go annually for check -ups and the extra transfusions stopped.

I had leukaemia for 13 years and even though my cell count was low, it was never truly gone. There was always a risk that there was enough parts of cells still present in my blood which could reform to bring back my leukaemia and I was told if this happened, surviving it for a second time would be almost impossible.
 

The ‘all clear’ result!

 

I will never forget the amazing day of the 8th November 2010. Finally, I was given the all clear by my doctor, telling me that my leukaemia cells were undetectable and that I was in full remission. After 13 long years, I had finally beaten it. In October 2013, I received the news that my blood tests were at 0.000% - my first completely 0% result since I was diagnosed and the new rigorous testing had been implemented!

I still have many things I have to deal with even 16 years on from my transplant. I think as I get older things get harder to deal with at times because I just ‘want to be left alone’ but…what can I say, I am very thankful to be alive and to be leukaemia-free!

Nowadays, I am very well, very happy and healthy and I appreciate everything life has to offer. I do not feel sad or resent having CML as it made me strong and gave me qualities which make me who I am today! It is part of who I am and a story I am proud to have and to share.

Comments

02.11.2015

Katy this blog is absolutely fantastic! Thank you so much for sharing!

It's great to hear that you're in remission and doing so well. Long may that continue to be the case. Stay in touch and remember that we're always here if you ever need anything.

Andy