2. Snap-shots of one family’s journey …
… viewed from the pointy end of the canula.
3. In the beginning
The people
CanI buy you dinner?
How much chocolate do you have?
The system
I need you to know I talk to everybody.
The red folder.
She’s needle-phobic, we can do the tests here.
4. Countdown
The people
Place cannulas so you can still play computer games.
Catering quantities of Emla (hold the Band-aids)
The system
He’s going to have a transplant. That’s good!
(At least she doesn’t have to have a transplant.)
Here is your appointment list for the week.
You don’t need to know that.
5. T-0 … off and running
The people
Doctor was off-duty but came to see us anyway.
Salad dressing.
The Ninja Night Nurse.
He’ll be OK, don’t worry.
The system
Not one, but two, doctors.
6. Discharge … the music stops
The people
The system
Outreach nurses. Clone them.
7. The waiting game
The people?
LEGO Limbo.
Why did this happen to me? I just want to be normal.
Do you think sometimes you can be so unhappy it
would just be better if you were dead?
How is he going? (OK, the same, not so good.)
What can we do to help? (Give blood. I don’t know.)
The system
It must be exhausting dealing with that every day.
8. The other side (?)
The school
Other patients are always “going great”.
The system
Regional clinics.
How’s school? Do you need us to write a letter of
support?
9. Please …
Ongoing, regular contact with our school and hospital
communities. Phone? Skype? Schedules?
Three-way partnerships between schools, hospitals and
parents.
Recognise that, just as medical care is not only about
test results, neither is school. Both are part of the thing
we call health.
10. Thank you
Ronald McDonald Charities (House and Learning
Program)
Sydney Children’s Hospital