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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

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Georgina Meyers - Supporting Families Through A Paediatric Bone Marrow Transplant

  • 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