4
by Dr Simon Bailey
I would like to offer my thanks and support for the work and effort that has gone
into making this instructive booklet which I am sure will be invaluable to the young
people and their families who have to deal with such devastating news.
Katie was a very brave young lady and her courage and that of Ann and Andrew
in dealing with this illness is an inspiration to others.The practical advice offered in
the booklet will be very useful as it is written by two people who have travelled this
diffcult journey themselves. It is reassuring to other parents and family members, as
well as the children and young people themselves, that there is non-medical peer
support available from people who truly understand.
DIPG is unfortunately a devastating condition and until now we have made very
little progress with being able to give effective treatment. However there is hope on
the horizon. A major effort is being made to understand the biology of this disease
and, in the last two years, the frst biological studies have been published. Further
studies are expected and, armed with this important information, drugs and novel
treatment will be targeted against the tumour cells. It will take a while to see the
potential benefts but at least the war against DIPG can begin in earnest.
You may be asked various questions about participating in studies or about
permission to take a biopsy.You may be bombarded with information at what is
a challenging time and asked to make decisions which seem very diffcult. It is
important to remember that there is no wrong answer for you or your child/young
person and these decisions are wholly dependent on individual circumstances.The
health professionals will support you whichever decisions you make and you will be
supported equally regardless of the direction you choose to take.
Most importantly I would like to salute the children and young people like Katie
who deal with this tumour.We all have a lot to learn from them and it is a privilege
and an honour to be able to help them.We hope to offer more to these young
people in the future.
Dr Simon Bailey
Consultant Paediatric Oncologist
Foreword