Update for 9/02/2012
9 February 2012Hi folks Thanks for all you posts and thoughts. After last week's update where Hope's health was apparently stable I realised it would have been good to mention that sometimes what appears to be happening on the outside is not often an good indication of what is going on inside. Like we expected, the latest blood transfusion was a bit of a pick-up for Hope's energy levels, although her blood counts were not as low this time as they had been previously. But while we've managed to get out and about a little bit with Hope this week, her health seems to have taken quite a dive due to what seems to be pretty rapid disease progression. Earlier in the week she started complaining that her eyes weren't working properly and we eventually worked out that she had double vision. It bothered her a little but she seems to have taken it all in her stride - she wore a patch over one eye for a while that helped but got a bit sick of it and took it off. She hasn't really complained of it since but looking at her, we can see that her eyes are crossed some of the time. I'm not sure why but this really had a big impact on me. For the last few weeks I feel like I've been in a kind of practical, functional mode - we can't live in the deep sadness of our reality all the time or we just wouldn't be able to do anything. We definitely have moments of sadness but they're in quieter times like in the morning or evening, when we're not surrounded by the busyness of the day. Every now and then something will happen health-wise with Hope that reminds us of the inevitable, and for me Hope's eyes did that. So I have had a couple of really difficult days this week, thinking about what she is going through and wondering about our life after she has gone. It's not really something that brings any kind of resolution because I have no idea how things will be later on, I just have to move through those days and deal with the emotion as it comes. Today is betterc Anyway, on top of this, yesterday Hope developed a severe headache which we had to give a lot of extra medication for over the course of the day. Unfortunately sometimes getting the right dose of medication takes a bit of time and the headache kept coming back all night, so it was very sleep-deprived night for her and us parents. Her background dose of morphine has been increased and today she has been comfortable and fairly happy. We had a meeting with some of Hope's medical team this morning. We had wondered if there would be any benefit in her having more radiotherapy to the skull/brain to alleviate the pain and deal with her vision issues. After a lot of discussion I think the consensus is that while they could do radiotherapy (and are willing to if we want it) the benefits, if any, would probably pretty limited. The same with the blood transfusions, and there is a pretty high chance that continuing with the transfusions might only cause her dying process to be more drawn out and possibly more distressing to her if the disease causes other major problems elsewhere in her body, i.e. progressive problems with her eyes, or hearing etc. A year ago, when we had the relapse diagnosis, I remember talking about Hope's birth and thinking that if this is the road we have to travel, then it is our privilege to see Hope through it. Writing it down makes it sound kind of odd but I guess I mean that as parents we want to make sure that Hope is surrounded by the security of her parents' love and care as she leaves us. I'm sure it's not a unique feeling to any parent who has been in this kind of situation, but it is this feeling that has underpinned every decision we have made for her. And as for Hope herself, she has been okay today after getting the pain under control. She is surprisingly UN-sleepy for a child who is on a big increase in morphine and who didn't get a lot of sleep last night! She still has quite a few smiles that sneak out here and there - like when she is watching Jonas trying to scare people by flashing his tummy, or when she hears that there is chocolate cake around - and she still has periods where she is engaged with things going on around her. We are expecting, though, that in the next week or so, as her red blood count decreases, she will get very tired and will sleep a lot more of the day. We haven't completely ruled out more blood transfusions (or radiotherapy) but I think we will see how the next few days go and whether or not the rapid progression of things continue or if her symptoms stabilize for a bit. We don't really know how things will go form here. Her birthday is in 10 days and it would be nice to make it to that, even just as a marker for us, but in the end it's not important really. We will just continue as we have been going, day-by-day making decisions for her that keep her comfortable, and we'll keep you updated as things continue. Thanks so much for supporting us through this. (posted by Bec Osborne in ""http://www.facebook.com/groups/57492606700/permalink/10150525404551701/"">Hope Osborne Updates