In 1998, Katy was diagnosed with blood cancer. She needed a stem cell transplant to save her life, but the register looked very different back then. Katy shares her story to help other people going through transplant to not feel alone.
Today, I am celebrating 9 years since being cured of my childhood CML (chronic myeloid leukaemia) and it feels amazing.
I was only five when we were given the devastating news that I had leukaemia. Being so young, I didn’t really understand all the fuss. It was only when I started to feel more poorly as the weeks went on that I knew it must be serious.
A race against time
We were told that a stem cell transplant was my only chance. If I didn’t have one within a year, I wouldn’t survive. So finding a donor became a race against time.
This was 20 years ago, and the register was much smaller back then. The doctors said that my odds of finding a donor were 1 in 300,000 – and there were only 220,000 potential donors on the register.
My family spent 10 months campaigning for more people to join the register and waiting for that news to come through that there was a suitable match. When we finally got that news, it was incredible.
I don’t know what my donor’s life is like or what she looks like, but I don’t need to. All that matters is that she was selfless enough to sign up to register and agree to save my life. I wouldn’t be here without her.
My memories of that time
Recovery was difficult. I was only six when I had my transplant and I was very weak. I struggled with being in isolation and I missed my dance classes and going to school (if you can believe it!) and then, when I was seven, I relapsed. I had to have a push of white cells to get me back into remission, which brought on chronic graft versus host disease (GvHD).
Sadly, the GvHD really affected my mobility; dashing my dreams of becoming a ballerina. But, despite everything, I was adamant that I wanted to carry on as much as I could with living a normal life and I wanted to be treated like all my friends.
You wouldn’t normally remember most memories from that age, but I can relive that time in my mind quite clearly. I remember the bad times of feeling really poorly and losing my hair, but I have good memories too.
The nurses were so lovely, and I had an amazing doctor. There was a schoolroom I used to go to; they had a snake and lizard, which I was allowed to feed if I completed my homework! And though it was hard being in isolation, I received about 350 cards which we stuck all over the walls of my room.
Life is difficult at times, but I am thankful to have it every day
Since my transplant, I have always been prepared for other complications and unfortunately, over the last 10 years I have developed several benign conditions requiring tests and some surgeries and, more recently, thyroid cancer.
Emotionally it’s been hard, but though life is difficult at times, I am thankful to have it every day. I’ve learned to roll with the punches. I enjoy the highs when they come and embrace the lows.
I wouldn’t be here without Anthony Nolan, so they will always have a place in my heart. Because of my transplant, I have enjoyed and celebrated 20 Christmas’ and 20 birthdays (and birthday cakes!)
I have just bought my first home with my boyfriend and we have a puppy called Poppy. Hopefully, the future continues to be full remission and no more problems!
There is so much hope
Throughout my life, the knowledge that nobody else was going through the same thing as me was really isolating. I felt I couldn’t relate to anyone around me. I would go to parties put on by the hospitals and in a room with hundreds of people; I would be the only child there with CML. I still haven’t met another person that has been diagnosed with adult CML under the age of 10, so I’m a rare case!
That’s why I wanted to share my story. I know what it’s like to feel isolated and like there is not much hope, but there is so much more hope now - in the last 20 years, treatments have advanced so much and the Anthony Nolan register has grown to over 750,000 potential donors.
Growing the register has been really important to me personally. Luckily, I found a match but so many people don’t. When I went to University, I founded and ran Kent Marrow, the student branch of Anthony Nolan. For all the work I did with Kent Marrow I won a University award which was a real honour.
To anyone going through this: The journey sucks and it’s really scary but believe that there is your whole life and hope at the end of this tricky part.
If you or someone you know is going through a stem cell transplant and would like more support, we’re here for you. To find out more, visit anthonynolan.org/patients