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 ?
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3 comments:
Can't really put myself in your scenario - I am religious (Presbyterian) so am not able to comment from your point of view.
But I do want to say that I sincerely hope you won't have to make those kind of decisions.
I follow another blog of a little girl named Kyah who has Neuroblastoma Stage IV and they had to make several really difficult decisions i.e. do they continue with really high dose chemo treatment that could possibly kill her and would certainly have really bad long term effects? Do they stop treatment? Do they just give low-dose treatment and give her quality of life? They ended up choosing the high dose treatment, because 10% chance is better than 0% chance and currently she is doing really really well. Still a high risk of relapse, but doing really well at the moment.
I don't know what they do in New Zealand as far as paediatric palliative care goes, but I do agree that the support should focus on the emotional support side of things. The "how to prepare" your child kind of situation.
This journey is always one of those kind of situations where afterwards you probably do think if only I did this or that or the other. I recently read a book and one of the things that stood out very clearly was a doctor who told a mum, "make the best decisions you can with the information you have at the time". And I guess that is really all we can do.
When is your end date for treatment? It is this year sometime? Some people say that is the hardest when you don't have the "safety" of the treatment anymore and it becomes a waiting game.
Bianca started school on Monday and so far so good. We haven't had school / steroid combination yet so it will be interesting to see how that goes...
Lea White
http://whitesinnz.blogspot.com
Thanks for the kind comment Lea.
Kezia's treatment finishes in November.
Dex and school really don't mix! We tried it once and the school rang an hour later to come and bring her home! Leonie in Ireland had the same experience - so be warned!
The thoughts you have are very similar to my own mostly unspoken fears for the future. I have spent my life not worrying too much about things I have no control over, attempting to be rational especially when it comes to my children. However my internal barometer is really out of order when it comes to the idea of a relapse for Leonie - all her odds are that she will live a full and normal life after November so why do I experience the "what would I do ? what would I say ? how would I explain" feelings that attack me (usually in the middle of the night). I reckon this is a mental preparation for the parents who get the bad odds. ..
I just hope I wont need that preparation.
Rosie
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