Tuesday, December 14, 2010

Well sadly Lucy's neutrophils were too low for her to have her bone marrow biopsy and lumbar puncture on Monday - well they were as low as you can get - 0! I thought it was a little optimistic to book her in but I suppose if she had happened to have recovered quickly it would have been good to get it over with.

Oh well. It's been put off until 5 January 2011. Between now and then we will have a little break from the hospital, except for the Christmas Party on Thursday, which is nice as I'm finding it harder and harder to go there. So many kids just look so unwell, and it's just hard to be there. I'm very grateful for some lovely friends and my lovely mum who often accompany me on clinic visits. Very much appreciated.

Lucy is well, but continuing in her no drinking phase. Since weaning in the middle of her treatment, Lucy has shown no interest in any kind of liquid or any mode of delivery thereof. Any ideas for getting her to drink? At the moment she just has lots of water or milk added to her food! She seems to be ok, but with less hair her depressed fontanel (gap between plates in a baby's skull which closes over gradually) is really obvious and makes me feel a bit guilty (it's often taken as a sign of dehydration)! Mmmm.

I had a great night last night with some friends at the U2 concert at ANZ Stadium. Much screaming and singing. Good therapy really and made me feel a bit young and carefree for a few hours. And today was Jasmine's last day of pre-school. We got to enjoy a great performance of the kids' favourite songs. Jasmine's 'mean' facial expressions during "Shane & Josh".... "were the meanest partners the world has ever seen" were just priceless. Next stop big school...

Here's Lucy's latest trick - crawling - not the best video but it gives the idea. She's still a bit froggy with the legs but she's getting there!

video


Friday, December 10, 2010

Still standing - thanks for your thoughts and prayers, we are deeply grateful.

Lucy is doing well - no fevers, platelets look to be recovering and haemoglobin stable. She will hopefully have her final bone marrow biopsy on Monday (if her blood results are good enough), and then assuming all is clear will be on the list to have her central line removed and she will just have fortnightly or monthly checkups!

She's also really taken off with crawling this week which is a great joy - both for her and the rest of us. She's very pleased with herself, and it's been a great diversion. Will try and get some video to post....


Wednesday, December 1, 2010

Home again

Hopefully this is the last time that we'll have to say this.... Round 6 of chemo is finished and Lucy's temperatures have subsided meaning we were allowed out this afternoon. Now we just have to watch and wait for Lucy's blood counts to fall and then recover again. Once recovered she will have a final bone marrow biopsy and lumbar puncture to check that everything is clear, and then we will move to a programme of monitoring to ensure that the disease doesn't return. I'm hoping the central line will be removed sometime during January

So it hopefully goodbye to Camperdown Ward.....


Lucy during the last round of chemo

with the lovely John and Dianne - not sure who enjoyed their visits more...

signing out for what we hope is the last time...

It's a good feeling to know the chemo side of things is finished, but at present I cannot honestly say there is any feeling of excitement. We still have to go very regularly for checks and then waiting for the final result. After that I suppose you learn how to live with the possibility of a relapse.

This whole process and life in general has taken it's toll on us. Physically, emotionally, everything. And yet I know that "I can do everything through Him who gives me strength" (Phil 4:13). I am deeply deeply grateful to our beautiful friends who through their words, actions and prayers God has used and is using to keep me standing. I'm also continually amazed and thankful to learn of people who I barely know or don't know at all who have been praying for us every day. Thank you so much. Such a wonderful expression of our fellowship in Christ and I feel privileged to be your sister and look forward to meeting you - either in this life or the one to come!

I don't know what the coming months and years will hold but know that I do not face them alone. God himself promises never to leave us, and in his kindness gives us each other to help carry each other's burdens, laugh and rejoice with each other and cry with each other. Personally I'm looking forward to a little more laughing and rejoicing.......