Supporting families through a Supporting families through a paediatric bone marrow paediatric bone marrow

transplanttransplant

Georgina MeyersGeorgina Meyers

Snap-shots of one family’s journey …Snap-shots of one family’s journey …

… … viewed from the pointy end of the canula.viewed from the pointy end of the canula.

In the beginningIn the beginning

The peopleThe people

Can I buy you dinner?Can I buy you dinner? How much chocolate do you have?How much chocolate do you have?

The systemThe system

I need you to know I talk to everybody.I need you to know I talk to everybody. The red folder.The red folder. She’s needle-phobic, we can do the tests here.She’s needle-phobic, we can do the tests here.

CountdownCountdown The peopleThe people

Place cannulas so you can still play computer games.Place cannulas so you can still play computer games. Catering quantities of Emla (hold the Band-aids)Catering quantities of Emla (hold the Band-aids)

The systemThe system

He’s going to have a transplant. That’s good!He’s going to have a transplant. That’s good!(At least she doesn’t have to have a transplant.)(At least she doesn’t have to have a transplant.)

Here is your appointment list for the week.Here is your appointment list for the week. You don’t need to know that.You don’t need to know that.

T-0 … off and runningT-0 … off and running

The peopleThe people

Doctor was off-duty but came to see us anyway.Doctor was off-duty but came to see us anyway. Salad dressing.Salad dressing. The Ninja Night Nurse.The Ninja Night Nurse. He’ll be OK, don’t worry.He’ll be OK, don’t worry.

The systemThe system

Not one, but two, doctors.Not one, but two, doctors.

Discharge … the music stopsDischarge … the music stops The peopleThe people

The systemThe system

Outreach nurses. Clone them.Outreach nurses. Clone them.

The waiting gameThe waiting game The people?The people?

LEGO Limbo.LEGO Limbo. Why did this happen to me? I just want to be normal. Why did this happen to me? I just want to be normal.

Do you think sometimes you can be so unhappy it Do you think sometimes you can be so unhappy it would just be better if you were dead?would just be better if you were dead?

How is he going? (OK, the same, not so good.)How is he going? (OK, the same, not so good.) What can we do to help? (Give blood. I don’t know.)What can we do to help? (Give blood. I don’t know.)

The systemThe system

It must be exhausting dealing with that every day.It must be exhausting dealing with that every day.

The other side (?)The other side (?) The schoolThe school

Other patients are always “going great”.Other patients are always “going great”.

The systemThe system

Regional clinics.Regional clinics. How’s school? Do you need us to write a letter of How’s school? Do you need us to write a letter of

support?support?

Please …Please …

Ongoing, regular contact with our school and hospital Ongoing, regular contact with our school and hospital communities. Phone? Skype? Schedules?communities. Phone? Skype? Schedules?

Three-way partnerships between schools, hospitals and Three-way partnerships between schools, hospitals and parents.parents.

Recognise that, just as medical care is not only about Recognise that, just as medical care is not only about test results, neither is school. Both are part of the thing test results, neither is school. Both are part of the thing we call health.we call health.

Thank youThank you

Ronald McDonald Charities (House and Learning Ronald McDonald Charities (House and Learning Program)Program)

Sydney Children’s HospitalSydney Children’s Hospital