This presentation was given by Georgina Meyers at the October 2012 CHA Conference, The Journey, in the 'Beyond Hospital Walls: Community Care' stream.

1. Supporting families through a
paediatric bone marrow
transplant
Georgina Meyers

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