Monday, August 22, 2011

2 already!

Well it's been a long time between posts and I thought I'd just a little one now that Lucy is a big 2 year old (5 August)!

Lucy is going well - all blood tests since January have been fine. We had a little scare a few weeks ago when Lucy developed a rash which looked an awful lot like the one she had when first diagnosed with leukaemia, which indicated that her platelets were very low. I freaked out a bit, but went straight to the hospital the next day and had a blood test. It was the quickest blood result we've ever had - 15 minutes! The doctor fairly burst into the waiting room saying "It's ok, it's all ok, her platelets are fine! Everything's fine". It's easy to forget how much the doctors like giving GOOD news - especially in oncology. We have now graduated to 6 weekly checkups at the hospital, and hopefully the time between checks will just continue to increase as time goes by.

Anyway, other than that, she's been going very well. Almost walking, but a bit fearful about letting go. We're starting to work a lot more on speech things - this week's achievement is saying "boo" when I say "peeka.....". For months she's enjoyed covering her mouth (I think she likes to see what's going on so doesn't want to cover her eyes) but the last few days has been much more clearly saying "boo" - or something like it. At least getting a distinct "b" sound which means putting that jolly tongue in!

She's really taken off with actions to songs - current favourite is "Open, shut them" and "galloompf". Very cute hand actions. She still loves giving cuddles and blows a mean kiss.


Anyway, here are some pics of the big 2 year old

 Check out my new wheels!


 Strawberries - yum!



Gardening!




On holidays at Fingal Bay

If anyone is interested, I've started a new blog at www.eatpaintsew.blogspot.com which is just meant to be a fun way to record some of the arty crafty cooking type stuff I like to do with and for my girls and myself.

Monday, February 21, 2011

Disasterchef

Well we did it! It was birthday week in our family, and our biggest girl Emma turned 7 on Friday! 7!
We had a special 'Disasterchef' birthday party with 9 of Emma's friends which was great fun. Needless to say I was completely wiped out for the rest of the weekend, but it was a good time and I think Emma had a ball, as did all her little mates. A special thanks to Lindsey and Nicola who worked themselves silly in the kitchen (even cleaning up when I couldn't move at the end of the party!) and Adam who did an excellent job entertaining the crowd between activities. Ultimate compliment - being asked by a dad if we'd got some company in to run the party!! No, no, just me and some friends! Will take bookings.....

Making mini pizzas

Aftermath of spaghetti relay - I told them that was the party food...they were strangely happy with that!
Choc coconut treats

My big 7 year old girl - seems like not long since I made her first birthday cake!


I am so very very proud of my beautiful girl Emma, who is a wonderfully sensitive and thoughtful person. She has a deep awareness of her failures (which can be quite hard to deal with as a parent!), but is learning the great value and freedom that comes with admitting them and trusting in the forgiveness freely offered by God through Jesus. She is such a treasure, and has and is learning to deal with all that life has thrown at her (which is quite a lot!) in her short life, and has a wonderful capacity to see and act on the needs of others. So often she reflects things to me that I've said or taught her in other contexts, in a way that just blows me away. Like me, Emma is learning to trust her loving heavenly Father every day, in every way, and I am so grateful for the way He holds onto her. Happy birthday gorgeous girl!



Wednesday, February 2, 2011

A big week

Well, all the Burke girls have had a busy time these last 2 weeks!

We arrived back from holidays at Fingal Bay on Saturday. It was a great time with our lovely friends the Kings and the Yapps, for whom I am most grateful. There were lots of great times at the beach, bike riding, eating, sleeping, playing, swimming, watching, and generally having fun. A most most welcome break for me (and the girls) and I was very aware, especially on Sunday morning when I went to church, just how much more relaxed and less anxious I was feeling. Am trying hard to hold onto that feeling, but it's slipping..... anyway here are a few pics of our week


So excited at sitting down near the sand!

Maddie just loved making sand castles



Lucy's first bike ride - very excited!



Emma's new love - boogie boarding, with Jas looking on

We came back on Saturday and Monday saw everyone swing into action. Madeline had her first day at pre-school. She has been dropping her big sisters to pre-school since she was born, so she was super keen and very excited that it was FINALLY her turn to stay! Very keen on painting in particular. I was very proud of myself that I had managed to remember to pack spare clothes in her bag as when I collected her in the afternoon she was wearing said spare clothes due to some overzealous water and sand play.



Emma started back at school on Monday too, year 2 this year.




Tuesday was Jasmine's first day of school which went well. She told me very confidently "You can go now Mummy" as she went off to join some other kids in the hall when we arrived. She was a bit overwhelmed at the end of the first day, but today (her second day) she was very pleased to have found a new little friend. I think she will be quite exhausted by the weekend, especially with it being so jolly hot!




And finally today, Lucy had her central line out!!!! She had a blood test first which was fine, and we then proceeded up to day surgery where she had a quick little operation to remove the line. Quite amazing really, and a real signal of the end of all her treatment. Woo hoo!!!!! She came through the anaestheic fine again which was great, and there was no trouble getting the line out. I was a bit worried the procedure might have been delayed as she had a little cough, but thankfully there was no problem and they were happy to do it. Thanks Mum for coming with me again. It's always a bit traumatic when Lucy has a GA, and visiting the clinic and the hospital in general is a bit hard these days, so I am very grateful for having someone with me.



And here we are outside the front of the hospital on our way home - hopefully we wont ever have to spend much time there again aside from routine check ups!

Thank you so much for coming on this journey with us. We are so grateful for your support. I am thinking that I might add things to this blog from time to time about Lucy's progress so that you can see how she's going. And of course if there are any developments with the leukaemia stuff I will definitely let you know. For the moment she will have monthly check ups and blood tests to see if the disease comes back - a possibility that I just can't bear to think about and am trying not to worry about. As time goes on the length of time between check ups should increase, but she will be monitored for many years to come.
Lucy and I go back to our early intervention stuff next week. Lucy has graduated into a group which operates a bit like a compacted pre-school programme. She still seems like such a little baby so it's hard to imagine her doing big girl pre-school stuff with other kids. But I'm sure she'll love it and hopefully thrive with the challenges set for her there.
We are still learning each day to trust God with our lives - at the moment my favourite verse and one that I remind the girls of often is this -
"God has said, 'Never will I leave you; never will I forsake you'. So we say with confidence ' The Lord is my helper, I will not be afraid. What can man do to me?'." (Heb 13:6)
Some days and some moments life still feels very overwhelming, but we trust in a great God who is far bigger than us, who indeed holds us all in his hands. Very early on in Lucy's treatment I had a very strong sense of our safety in God's care - whatever the outcome with Lucy's leukaemia - and now I am reflecting on that safety again. At the moment my sense of that safety perhaps isn't so strong, but thankfully the God in whom we trust is not affected by our wavering but is the same yesterday, today and forever. And so I can still say with confidence that whatever happens we are all still safe in His sovereign care. It is a decision to make every day to keep trusting in God's goodness and kindness and salvation, and I pray that it is one that you will make with me, and seek to live a life to His praise and glory.

Sunday, January 23, 2011

The Line is Coming Out!

We've been advised that Lucy's line will come out on Wednesday 2 February!! Hopefully it will just be a straightforward procedure, but it has to be done in theatre so it means another general anaesthetic and probably a bit of a bigger one. Please pray it would go as smoothly as the last general anaesthetic she had for the bone marrow biopsy and lumbar puncture.

I was quite disappointed that we didn't get to have the line out in the last week, as today the girls and I are going on holidays for a week with some friends to Fingal Bay. It would have been great to be able to take Lucy swimming, but we'll survive. Not long now! Please pray for safe travel and time at the beach etc. There will be 5 adults and 11 children staying together so it's sure to be a bit crazy, but hopefully crazy fun!

We're nearly nearly there with Lucy's treatment. Hopefully the leukaemia will NEVER ever come back - but we turn now to watching and waiting to see if it will. I had an awful dream last night that it came back straight away. Please pray that we'd trust God whatever the future holds, and that in His kindness he might spare Lucy (and us) from any further issues with leukaemia!

Thanks so much for your help and support which we've felt in so many ways.

PS Happy Birthday Mum!

Friday, January 7, 2011

Bone marrow biopsy and Lumbar puncture

Well we've had the final bone marrow biopsy and lumbar puncture and today the doctor advised that the results are good. Only 1% blasts (abnormal cells in the bloods/bone marrow) which is normal, so they are happy with that. Apparently we all have a few abnormal or immature cells floating around, so 1% is fine - the problem is only when they start multiplying and taking over.

The doctor will now write to the surgeons about having Lucy's central line removed, and hopefully this will happen in the next 2 weeks. Once that's out, we will move to monthly or 6 weekly visits. It's good to see that this part of the treatment will be over soon, but strangely anticlimactic. We turn now to watching to see whether the disease will return, which, although quite unlikely, is most likely to happen in the first 2 years. Can't think about that now though. Day at a time, and I suppose it will be one blood test at a time....

Will let you know when the line is to come out, thanks for your support.


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....