Georgina Meyers - Supporting Families Through A Paediatric Bone Marrow Transplant
Supporting families through a paediatric bone marrow transplant Georgina Meyers
Snap-shots of one family’s journey … … viewed from the pointy end of the canula.
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.
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.
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.
Discharge … the music stops The people The system Outreach nurses. Clone them.
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.
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?
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.
Thank you Ronald McDonald Charities (House and Learning Program) Sydney Children’s Hospital