Dr Crippen got me thinking about palliative care as you may have seen by my post on Friday last. Particularly for children, their siblings, their parents, carers and family ...
What if ... as Rob has put it, the other shoe drops ... and Kezia relapses? She will require a bone marrow transplant, a compatible donor will have to be found. Her chances of survival diminish dramatically and the transplant can fail as Adrian Sudbury has shown us.
As an adult or a young adult, such as Adrian, Josie Grove, Davo, Lucia, and H., when to stop an increasingly painful treatment regime with miniscule probabilities of success, make it "easier" to decide to let the disease kill you and move on to a palliative care regime that will hopefully lessen the pain of dying. It is your decision.
What if ... in a year's time Kezia relapses?
What if ... further treatment fails?
At the age of five, six, seven years-old a child cannot make the decisions Josie and Davo made and Adrian has made. It will be our decision as her carers and parents. We will have to sign her death sentence - our only choices will be for her to die slowly with much suffering or to die more quickly with less suffering.
The clinical side of paedatric palliative care does not cause me much worry ... how much morphine or whatever painkiller, she would be prescribed. But the psychological side does ....
Many carers take comfort from their religious faith and say to their loved one, whether adult or child, "You will soon be going on a journey to be with the Bunny Rabbits and Angels - Mummy and Daddy won't be with you on the journey but we'll join you there later". Heaven as a super-kindergarten.
In fact, Kezia already has her visa to get through St. Peter's Gate as my dear Aunty Laura (who phones Nanda every week) converted to the Church of the Latter Day Saints (Mormons to you and me) and they baptise everyone, living or dead, whose birth, death or marriage certificate/record they can get their hands on. So Kezia has a guaranteed place in Mormon heaven ... deity forbid!
I have no religion. Nanda is a "token Roman Catholic" (baptisms, weddings and deaths - as most people here and as most people in the UK).
What would we say to Kezia and her brother Jaime ?