7
Keeping a Diary
Diagnosis and treatment of a DIPG is something which the whole family, not just
your child, goes through.There are many practical things you and your family can
do to help everyone cope with what could be many months of treatment and time
spent in hospital.
Keeping a diary from day one is a good way to keep track of your child’s progress
as well as being a useful tool enabling you to look back on how the treatment
programme developed over time.You may wish to keep a record of your child’s
blood counts as this can be useful for the medical team.
There are pages included at the back of the
booklet for you to make notes and it’s a good
idea to write down things that you especially
want to know so that you can raise them
when you see different members of your
medical team(s). Having a ready list of questions
– and writing down their answers at the time –
can help act as a reminder for what you really
want to ask and need to remember about your
child’s treatment. As you get into a routine you
will fnd that some queries can be dealt with on
the spot while others may need a setting and
time when unhurried discussion can take place.
Don’t be afraid to ask for a specifc meeting to
accommodate this.