September is 'Blood Cancer Awareness Month'. This year, Bloodwise are shining a spotlight on the need to reduce long term side effects from childhood blood cancers and the only way to do this is to invest in lifesaving research.
Not everyone is aware that blood cancer is the most common form of cancer in people under the age of 30. My story began back in January 1998.
In 1998, I was on holiday with my family in America and I showed signs of a distended stomach - I looked like a pregnant five 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. This type of blood cancer is most common in 40-60 year old adults and usually only two children on average are diagnosed with it each year. In the 13 years my Paediatric Haematologist looked after me, she never had another patient with the same condition as mine and to this day, I have never met another person who has had or knows someone who has had, CML diagnosed under the age of 10.
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!
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 five months where I desperately needed to find a match. Just months before my one 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.
I was admitted to hospital and I was told I would be in for at least eight 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...(which they are now going to stop giving to patients as it tastes dreadful but it is also very destructive!)
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! I had a visit from some football players from Queens Park Rangers and I was 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 assemblies.
Time to go home
The transplant was successful and after eight 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. This is a side effect usually caused when your bone marrow donor match is not as strong as it could be so the graft is not as well matched to the host - the difference between a 9/10 and a 10/10 match you could say! The GvHD caused Scleroderma pigmentation on my skin which was very red and sore. My joints ached and I couldn't walk very quickly or any distance before needing to sit down. I could no longer straighten my fingers and I had to sit on a chair in school assemblies as I was unable to sit cross-legged on the floor with my friends.
During the first few years after transplant, I went to hospital either every three months or six 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!
Late Effects & Further Treatment
I still have many things I have to deal with even 18 years on from my transplant - both emotionally and with late effects as a consequence of my CML and all the treatment I had to cure it. My doctors have told me that common late effects from transplants are dental issues, cataracts, osteoporosis further cancers and thyroid problems. Sadly, in November 2015 I was diagnosed with Thyroid Cancer. This was as a result of the full body radiation therapy and bone marrow transplant. In January 2016, I had a full thyroidectomy and am currently undergoing radio-iodine treatment - which is an internal and 'safer' format of radiotherapy that external 'zapping'. The issue with this treatment is it is still further radiation treatment, which can lead to developing 'further cancers' in the future.
My GvHD has improved over the years and I have better than most 'normal' individuals however I amunable to participate in high impact sports - such as athletics, as my body cannot withstand the impact and shock absorbance. My hands are uncurled and look normal, but I am unable to fully flex my wrist to lay my palm flat on a wall or table top at 90 degrees. The Scleroderma is still visable on my skin, but nowadays is a light brown rather than red - which just makes me looked a bit more tanned in places!
I developed cataracts in both eyes shortly after my transplant and I have worn glasses ever since. Eventually I will need to have them out - but I have a phobia of eyes/anything touching my eyes so I haven't found the courage to do it yet!
The doctors have warned me that I am unlikely to be able to have children in the future. The large dose of drugs, radiation and transplant itself could have made me infertile so this is something I will need to have tested when I am ready. Also, the stress on the body when carrying a child could cause my leukaemia to be triggered off again and with the knowledge that my CML returning would result in just scenario - it is not something I am prepared to risk my life for. It is a hard pill to swallow but something I must learn to accept as a young woman.
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 at least!
Nowadays, I am very well (you wouldn't know I have thyroid cancer!), 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. The late effects however...they are a whole other ball game and I must say, they are the only things that scare me as I get older. With the unknown on what could happen in the future, its important to live each day to the full, however you can't help think that it seems unfair to have late effects and consequences of having such a severe illness - you just think 'haven't I been through enough!?'.