tag:blogger.com,1999:blog-9111865175990268039.post4074519588401318001..comments2023-10-17T12:41:57.681+00:00Comments on Life with Leukaemia: What if ... ?Angushttp://www.blogger.com/profile/07533009793681883619noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-9111865175990268039.post-34987784269417855972008-07-23T22:04:00.000+00:002008-07-23T22:04:00.000+00:00The thoughts you have are very similar to my own m...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. ..<BR/>I just hope I wont need that preparation.<BR/>RosieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9111865175990268039.post-72957278142122528012008-07-23T10:00:00.000+00:002008-07-23T10:00:00.000+00:00Thanks for the kind comment Lea.Kezia's treatment ...Thanks for the kind comment Lea.<BR/><BR/>Kezia's treatment finishes in November.<BR/><BR/>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!Angushttps://www.blogger.com/profile/07533009793681883619noreply@blogger.comtag:blogger.com,1999:blog-9111865175990268039.post-57999719372611628002008-07-23T09:41:00.000+00:002008-07-23T09:41:00.000+00:00Can't really put myself in your scenario - I am re...Can't really put myself in your scenario - I am religious (Presbyterian) so am not able to comment from your point of view.<BR/><BR/>But I do want to say that I sincerely hope you won't have to make those kind of decisions. <BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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. <BR/><BR/>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...<BR/><BR/>Lea White<BR/>http://whitesinnz.blogspot.comLea Whitehttps://www.blogger.com/profile/08115298071761933905noreply@blogger.com