Sunday, October 31, 2010
Wednesday, October 27, 2010
Saturday, October 23, 2010
When I stop to think about our lives and where we've ended up I can't help but be a little surprised! Lucy especially has certainly taken us places and introduced us to people that we would never have otherwise known. And it is she who, despite her youth is having a great impact on people.
Adam stayed overnight at the hospital, and as I was running a little late for him to get to work he asked if a volunteer might be able to come and sit with Lucy for half an hour. A lady arrived in her signature pink stripey apron in record quick time. On meeting Adam, she mentioned to him that she had been a volunteer for 3 years but never been to the oncology ward, as she had always asked not to go there. She had lost a brother some 50 years ago to leukaemia, and just didn't feel able to face the oncology ward. Anyway, on Tuesday she was asked if she could pop up to Camperdown to look after a baby for half an hour. It wasn't till she was half way there that she remembered what Camperdown was. But, instead of turning around and asking someone else to go, she decided to come and make it a special time for herself and take that first step into the oncology ward.
Adam phoned to tell me this before I arrived, so I came to the room not quite knowing what to expect. When I arrived I found Lucy and this lady having a lovely time - Lucy being her usual cheeky cheerful self, laughing and playing, and unknowingly helping the volunteer to take some more steps down the path of grieving and growth. And how kind of God to give her Lucy - a baby who loves everyone she sees, who looks and is healthy and happy, and who even still has most of her hair - possibly the easiest introduction to the oncology ward there.
Wednesday, October 20, 2010
We can almost say 5 down, 1 to go!
Monday, October 18, 2010
It feels oddly like we've come a full circle, as Lucy was moved yesterday into the room we had when she was first diagnosed and where we had our longest stay in the hospital. It's a room sponsored by the police - complete with lights - and a mural on the wall. A large "PLEASE DO NOT USE BATHROOM" sign is a little disconcerting, but otherwise it feels a bit like coming home.....well only a really little bit - maybe 'home' is the wrong word - more like coming back somewhere familiar. I am glad to say that as I sit in the chair I typed so many of those early posts, I don't have the same sense of fear or anxiety as I did then, which is a great testimony to God's grace and kindness both to Lucy and to me.
She is continuing to tolerate the chemo well, although noticeably tired and just not as sparky as usual. Not grumpy, but not full of beans like she normally is. For some reason I have a feeling she might lose more of her hair this time, but that is not based on anything at all other than a gut feeling, and of course that may just be indigestion. Wait and see.
We had a really good day at the hospital on Saturday with all the girls. They loved playing in the playground, and especially liked the Starlight Room. I even met a volunteer who works with my old boss at the Anglican Diocesan head office! Emma has rekindled a great interest in beado's or hummer beads (the things you make patterns with then iron to melt them all together). A professional musician came to the Starlight Room in the afternoon to do music with the kids which Jasmine particularly enjoyed, and Madeline just thought jumping on the bean bags and watching a movie projected on the wall was amazing. We even got to have the night at home together thanks to my wonderful mum, which was just lovely.
Madeline had pre-school orientation today, and, as expected, was quite difficult to extract at the end of the time there. She is terribly keen to go, and was very excited to have 'a little visit' today. Lucy's extra grandparents the McKerlies came to play at the hospital so I could go with Maddie to pre-school, and I think everyone had a lovely time! Adam is away for a few nights this week so please pray for us and the girls with all the juggling, and for the Burkes as they have the girls for the nights Adam is away and I'm at the hospital. They seem to cope very well with it all, but Emma is a bit unwell and also the most affected by all the disruption. We're hopeful to be out of hospital on Thursday or Friday, assuming Lucy is still well.
Thanks for keeping up with us on this journey, love to you all.
Thursday, October 14, 2010
This morning's blood test showed Lucy's neutrophils have popped up to a level that means she can have her next course of treatment. We are ever so grateful to have scored a fantastic single room in the ward, especially as we will be here for at least a week. This round is 7 days, whereas previous rounds have only been 4 days. Hopefully we will be able to go home again when the chemo finishes.
Please pray for us all as we do the family juggle for the time we are in hospital, and for Lucy as she faces chemo again. She's tolerated it all so well so far, but with each new round there is the possibility she will not do so well. This time she also has a different drug that she's not had before. Although it's usually tolerated quite well by the kids, it's another variable and unknown for us. So far so good - she's sleeping soundly beside me.
I just watched an amazing game of netball to round out the Commonwealth Games. Such a shame to ultimately see the Aussies go down in double extra time! A fantastic game nonetheless. That jolly NZ GA just would not miss a goal!! I used to be a netball player - I don't think my back would let me play again (for the moment at least!) - and I'm am just always astounded by how big and athletic the players are. But I did also feel that familiar irritation with the umpires getting a bit whistle happy and not letting the game flow. Mmm, maybe better I'm not playing and just watching....
Wednesday, October 13, 2010
Still no beds today (still trying to hold onto the good things..... but my grasp is getting a bit weaker). Adam's in Dubbo and we are just managing to keep going. At the Burkes today while we waited on news for a bed, and will stay here the night so I don't have to be on my own again for the evening. Here is Lucy being darn cute 'singing' her favourite songs....
Monday, October 11, 2010
Friday, October 8, 2010
We were then advised that there was a bed available for Lucy, but on having her blood tested at the hospital found that her neutrophils (type of white cell) have still not recovered enough to start the next round of chemo. I really didn't feel like going to the hospital today, but after getting it together to sort out the other girls and get there, the news that we weren't to start treatment today was a real let down.
The doctor advised that he thought an earlier higher count of Lucy's neutrophils may have been an error (esp considering that all other bloods were on the way down). This far through treatment, it's likely that her bone marrow is 'tired' after being blasted so many times, and just taking a bit longer to recover. Hopefully it will be recovered enough to blast again (!) next week.
Have just been feeling low, tired and head achey this afternoon and evening, lacking in energy for anything much at all. The last 2 days I've also been thinking about the future again, and feeling a bit anxious about the prospect of Lucy's leukaemia coming back or relapsing. I haven't been feeling anxious about the future for some time, but for some reason it's been on my mind a bit. Clearly still learning to take each day at a time, and trust God with all our days.
Hopefully a good sleep will help and tomorrow will be brighter.
Monday, October 4, 2010
Saturday was a nice day and we took the girls horseriding in Megalong Valley and had a picnic a park at Blackheath. So much beautiful blossom everywhere, including in the front yard of the Russell's house where we are staying!
Presuming Lucy's bloods have recovered sufficiently and there is a bed available she will start her next cycle of chemo on Friday. It is starting to feel a little bit like the home stretch now - this is round 5 of 6. Not that we know what happens when the chemo finishes really, but my vague understanding is that she will have regular checkups for a long time (hopefully getting further apart), and her central line will come out a few months after she finishes treatment.
For the first time I'm actually turning my mind to next year and contemplating what it will look like. Jasmine will start school, and Madeline will be starting at pre-school. Hopefully hospital appointments will be kept to a minimum and there will be no reappearance of any leaukaemia! Things at Early Intervention will be a bit different with Lucy graduating to a weekly group rather than fortnightly one on one appointments. Hopefully she will progress to crawling and ultimately walking although this may not happen till she's well over 2 years. We're also looking forward to seeing some teeth!
So it's all looking a bit different and hopefully a bit more back to 'normal'. But lets not get ahead of ourselves.... a few more things to get through this year first.
Hope you had a great long weekend too!