Story by Max Horwood
United Kingdom
http://www.maxhorwood.com/
I was diagnosed with chronic myeloid leukaemia on Friday May 23, 2003. I was 10 at the time and after a short
treatment of hydroxyurea, I was started on a drug called Glivec on July 24. Up until my diagnosis, the only tablets I
had ever taken were vitamin supplements, but now taking Glivec (and occasionally codeine for pain relief after bone
marrow aspirates) became part of my life. Glivec helped to both reduce my enlarged spleen and the cancer cells in
my marrow. Life returned pretty much to normal with Glivec, but thinking back there were some side effects: weight
gain, thinning of my skin and of course the diarrhea.
Max with his siblings
It was in February of last year (February 17, actually) when at a routine appointment with one of my consultants we
were asked to consider a bone marrow transplant. My parents both cried at the shock of the mention of a BMT and I
also cried as I was confused and scared. Glivec had become our ‘comfort blanket’. Over the next couple of months,
Mummy and Daddy had several more appointments with the consultants to discuss the BMT procedure. They took
advice from many professionals, and Mummy even e-mailed Dr Druker in the States.
I also went to a few of these and I remember one meeting with Professor Irene Roberts at St Mary’s Children’s
Hospital in London when I made up my mind that I wanted to go down the
BMT route. The Professor was the first person who didn’t talk to me about percentages. She talked about risks, of
which there are many, but she also mentioned the risks of continuing on Glivec
when there was a matched donor available for me. So early in July 2005, I had my Hickman line fitted
which would be accessed for all my treatment. I was also fitted wtih a Naso Gastro Tube (NGT) which would be used
to feed me when I found eating difficult. Due to the treatment I would often feel very sick and I lost a few of these
tubes due to this. The days before the new cells are given are full of treatment and some of the drugs leave you
feeling very unwell and poorly. The marrow infusion is also through the Hickman line and I remember how little time it
took. About half an hour after the infusion, I remember feeling very cold and I was told that this was
a normal reaction.
The following days in isolation, we would anxiously await the results of the morning blood counts. Before I would start
recovering I was told that I would feel bad due to the chemotherapy work up treatment and would easily pick up
infections as I would not have any neutrophils. I was in a lot of pain but the nurses helped me manage my pain. I
eventually ended up on a morphine drip, but even then I would insist on a 40 minute break to have a bath and
exercise on my bike each day, which I brought into the isolation room. The nurses were brilliant as I could easily have
stayed in bed all day every day, but they made me understand that my recovery would be quicker if I did get up and
do things. And it did help as it made me forget for a while. My neutrophils appeared on day +11 and by day +13, I was
out of isolation. It was a really weird feeling! My discharge depended on whether I could take all my
medications orally. That was really hard but it did get better in time.
There have been setbacks when I have ended up back in hospital with infections which have required intravenous
antibiotics. That is scary and I will not tell you any different. 6 months after transplant, the PCR test shows no signs of
leukemia and I am 100% donor cells. Seven months on, I have returned to boarding school and yesterday (20
February 2006), I returned from eight days skiing with my school in France. I take each day as it comes and make
sure that I continue to set myself goals. These help me to look forward and that is what matters now.
Max with his nurses
Max trying to live life as a normal
teenager. Max continues being cured.
teenager. Max continues being cured.