Tuesday, September 28, 2010

Sisterly love...

I was called in to the lounge room yesterday so they could show me they were having a lovely cuddle and to take a picture! If only this were always the way.....maybe I should put a copy of this up in their room....

Anyway, Adam is a lot better and returned to work today. But now I'm a bit sick. Madeline is pretty awful too - all snotty and sad. But since Lucy has stopped breastfeeding I'm loving the cold and flu medication that I'm now free to take after approximately 7 years of not being able to take them!

Emma and Lucy have so far resisted getting sick at all, although Lucy's white blood cell count was down today which may indicate that she's fighting the virus - hopefully she will win and she wont get sick - especially as we're hoping to have a few days up at the Blue Mountains over the long weekend before her next chemo cycle starts Friday week (hopefully).

I'm feeling a bit defeated on the home front - and too tired to really do anything about it. It's not too crazy, just random and frustrating piles of washing that are not putting themselves away, piles of paper that seem to materialise out of the air, and the relentlessness of having to feed small people and clean up after them! We still have a few meals in the freezer and quite often people very kindly drop in a meal, for which we are very very grateful and which makes the feeding of the small people much less stressful. I'd love to do some sewing (for some reason it's become my sanity) but the last little while it's just not been possible. Maybe tomorrow.... It's Madeline's birthday on the weekend and I'd love to make her a little dress, but I'm not sure I'll get there. Oh well. Maybe I'll just aim for Christmas....

Emma is enjoying Spring Fest at Mowbray School - a holiday kid's programme put on by Lane Cove & Mowbray Anglican churches. Such a great opportunity. She's loving the games and craft, and especially getting to know and hang out with some big girl leaders. Next week she's also going to go to a special Sibling Day at the hospital which she's looking forward to.

Hope you're enjoying your holidays and not succumbing to any of the nasty bugs doing the rounds at the moment!

Friday, September 24, 2010

Adam is sick. Not just man flu - real flu. He's been in bed the last few days and is not at all well. We'd really appreciate your prayers for his recovery and that the rest of us, especially Lucy, would not get sick. I'm feeling surprisingly robust and on top of things, so please pray that I don't fall in a heap. I even made a trip to Ikea with Alison and the kids this morning to get a few things. A bit wild but we made it home with all the right children (I almost left Lucy behind at one point....) and a few successful purchases.

Lucy is as sparky as ever. We enjoyed being able to go to Early Ed on Thursday, and we are encouraging Lucy with crawling and side sitting. It looks like she's favouring her left hand, and objecting being forced to do things with her right hand. We're also trying to interest her more in books - hospital time is good for this! - at the moment she seems to see books more as toys to throw around or put in her mouth! I find it hard in our days at home with the girls to make time to play and read to her, so please pray I'd try hard to make time for this important 'work' which is so important for her development. We need to get the other girls onto the task of reading to her a bit more. She's loving knocking over block towers to the cries of 'crash' from her sisters (or Mum!) which is very cute.

Happy holidays to all of you with school age children - I hope that you make some time to just 'be' and enjoy beautiful spring together.

Wednesday, September 22, 2010

Random health issues!

We seem to be having a rather odd day health wise!

First, Lucy's bloods are already starting to recover after the last round of chemo, which is great and means that she didn't have to have any blood transfusions. But, a thyroid function test last week has shown that her thyroid is mildly underactive - a common problem for people with Down Syndrome, but which is readily manageable with medication. So she started on another medicine today for that and we add an endocronologist to her list of specialists!

Jasmine was stung by a bee in the garden at Nanna and Poppa's place, and Madeline had a tick (I think...). Adam has some wierd gungy finger that is looking a bit infected and has gone to the doctor tonight. Emma is ok but was complaining of a sore eye on the way to bed. I'm pretty good relatively speaking!

I'm sure you're all very glad to know these details, but it struck me as kind of odd to all happen at once. We've also been notified that there was a child at creche at church on Sunday and Tuesday with whooping cough. Fabulous. Hopefully Madeline did not get in the way of any coughing or sneezing. Jasmine has a bit of a cold, so hopefully that will not develop into anything even minutely resembling whooping cough!! Please pray that all the children, but especially Lucy, would be kept safe from this possibility!

We are hoping for another fever free recovery period for Lucy so that we can be home over the holidays, and not have so many clinic visits. Adam may be able to take a few days off next week which would be great!

Hope you are well and free of random health issues!

Saturday, September 18, 2010

Ducks and Doe a deer

What a beautiful day it was today! Sunny Sydney at it's spring best. The first free Saturday in a while and we were drawn to the outdoors, spending lots of the day at Narrabeen - on the lake side with a few ducks - known as 'Duck Park' to our girls. Just gorgeous!

Lucy is well, although her temperature crept up to 37.3 this evening - we're hoping that it comes right on back down again as a trip to emergency for re-admission is not what we want. I missed a dose of her antibiotics today as we were out all day and I forgot to take the bottle with us (the first medicine dose I've missed!!) so am feeling a bit anxious about that. I spoke to a nurse on the ward who said not to worry about it, and not to worry about making it up. It's the last day on her course of antibiotics, so hopefully she will be fine...

The girls are currently obsessed with The Sound of Music. Madeline is particularly taken with it, asking to watch "Doe a deer" pretty much every day. We are constantly regaled with renditions of You are 16 going on 17, Doe a deer and Favourite Things and discussion about who is whose favourite of the Von Trap children. Lucy is babbling a lot - lots of 'da, da, da' and 'na, na, na' (I'm working on 'mama'). We're wondering whether her first intelligible words might end up being "Doe a deer"! It would not be surprising given the exposure she's had!

Wednesday, September 15, 2010

Home again! All is well with Lucy - her foot is back to normal and we are just giving her some oral antibiotics. Back on the programme of clinic visits to monitor Lucy's bloods as they fall after having the chemo. Hopefully no more fevers and a bit more time at home.

Feeling overwhelmed by kindness at the moment - today we had lovely people mow the crazy lawn for us and weed our front garden! Also, a few weeks ago we were told of a proposed increase to our rent (no, not so kind...). I wrote to ask for a slightly smaller increase due to our circumstances, and today we were advised that the landlord has refused our request (also not so kind.). But, someone at the Real Estate Agent (we can only guess that it's the owner, but maybe not) who heard of the property manager's turmoil at having to break the news to us has incredibly kindly offered to cover the different between what we offered to pay and what the landlord is demanding for 6 months!!! That is really quite stunning, especially as the proposed increase is actually greater than what we were originally advised!!

I often stress about the house thing, and the thought of having to move right now sends me into a spin. We can't afford to buy a house anywhere around here, but we cannot contemplate moving away - now more than ever. We are so thankful for this kindness shown by someone who we have never even met. Jaw droppingly stunning as I said before! Still can't quite believe it.

Must go to bed after a long day, visiting the clinic tomorrow with Jasmine and Madeline in tow. They love going to 'hospital care' which is child care at the hospital for siblings, run by gorgeous volunteers, and it's nice to involve them in the process and to stay kind of together for the day.

Monday, September 13, 2010

What do you do?

Despite the beautiful sunshine today I can't help but feel quite sad.

Lucy is doing a lot better - her fevers have subsided and the sore foot, though still a little swollen, is much improved. This is all great news, but yet I find myself being forced once again to confront the reality of where we are, and it's not nice.

I found out last night that two children whose parents I have met whilst being in hospital have died recently. Whilst we don't hold fears for Lucy's life at present - she is doing as well as can be hoped or expected, and the doctors are aiming for complete recovery, it is an awful reminder of the reality of life and death here in the oncology ward and the precariousness of life.

I feel so sad for those families, and have spent a lot of time today just wondering what you do if your child dies. What do you do when you go home? What do you do after the funeral? Really, what do you do?

I may never see those parents again, but I so pray that they would know God's kindness even in their grief, that they would know of the hope that he freely offers to us all, of his grace and mercy demonstrated in the cross of Jesus and the victory over death he has won in Jesus' resurrection.

I feel such a burden for all the families in here, and yet so inadequate and at a loss to know how to care for them. But I can pray, and I can talk, and as God gives me opportunity and energy hopefully I can share our hope and faith with others. Please pray with me for all the families here - for healing, for hope and for peace with God. And pray for the wonderful chaplains here at the hospital - they have a couple dedicated to the oncology ward, funded through Anglicare. Such a wonderful and essential ministry, yet very stressful and hard for those involved, so please pray God would sustain them in their work and faith.

Friday, September 10, 2010

Fevers and a swollen foot!

Well it's been a bit of a wobbly beginning.

We got in last night and at about 9pm Lucy woke up quite distressed. She then spent most of the night (on and off) trying to fill her nappy and was obviously quite uncomfortable, and then when she woke in the morning and finally succeeded, she went on to develop a fever of 39. She's been quite sad and very sleepy, not wanting to eat or drink at all really.

She has been started on some antibiotics and given panadol which has brought her temperature down. She also has a strangely swollen right foot! It may have been caused by some mosquito bites that have been aggravated with the chemo, but we're hoping that the antibiotics will take care of whatever it is.

She perked up a bit after the panadol and a tiny bit of food, but is back asleep again now. Hopefully this will be shortlived, and as her neutrophils are currently 5.0 (!) she is not so vulnerable to infections. Of course this round of chemo will change that, but hopefully for the moment her immune system will help us out too. Emma was sick with a bit of a fever yesterday (as was half her class apparently) so maybe she's just got whatever Emma had.

I was starting to feel a bit wobbly myself with Lucy so sad and in obvious pain. I don't think I've felt like that since Lucy got her first fever after the very first round of chemo. A big reminder that we just don't know how each round of chemo will affect her, and of how little and vulnerable she is. I'm very grateful to have had a visit this morning from the wonderful Alison K. I feel so much calmer when there is someone else with me through the bumpy bits. And thanks too to Mum who came with us yesterday when we were admitted. My back thanks you for all the carrying you did for us!

Please pray we'd keep trusting God with Lucy and our whole family every step of the way. And thanks that his mercies are new every morning.

Thursday, September 9, 2010

We're in!

Well we've finally made it into hospital and Lucy's fourth round of chemo has started. We have even been fortunate enough to get our own room! I think one of the lovely nurses in the clinic realised how sore my back is and pulled some strings to get us a single room. How nice is that?! Anyway, it's been a long day and I'm weary so will go to bed very soon. I've got some nurofen plus to help me through! Thanks for your thoughts and prayers - please pray Lucy tolerates this round of chemo as well as she has coped with the earlier ones. Emma went home sick today, so please also keep the other girls and Adam in your prayers.

Wednesday, September 8, 2010

AAAAaaaaaargh! Still no beds!

Monday, September 6, 2010

No beds!

No beds available!! We are still at home waiting on a bed at the hospital so that Lucy can have her next round of chemo. A bit frustrating, especially as we have got everything planned for the other kids for the week. Hopefully tomorrow we'll get a bed, but no guarantees.

We had a lovely weekend though - we even got to walk to water on Saturday! Didn't get too soggy, and it was a good time together. Even Jasmine walked the whole way (about 5kms) without complaint. This was no doubt mostly due to the fact she was holding Renee S's hand the whole way - thanks Renee!! Our girls just love you!!! Needless to say, they were exhausted come Saturday night. Adam and I had a great night out on Saturday together at a yummy Malaysian restaurant in Lane Cove. After church on Sunday we had a lazy afternoon with a viewing of the current favourite movie The Sound of Music and a whole lot of washing in prep for the week and to take advantage of the gale that was blowing across Sydney.

Will update when we get to the hospital!

Friday, September 3, 2010

Dummies and Walking to Water

Not such a flattering picture but I thought it was amusing!
Hi there, still home, still ok. Lucy's been a bit grumpy this week, but is currently having a sleep so not so bad. No fevers though so still at home. She has stopped waking at night which is good, and it seems she's not in so much discomfort.

The biggest change in our house in the last few days has been the disposal of Madeline's dummies. Since she was tiny Madeline has loved her dummies - not just one, but multiple dummies when in bed to be sucked, held between fingers and held touching her nose. Over the last little while she's been waking us up semi-regularly when she can't find one in the night. Sorry, not can't find one, can't find ALL of them!! Very frustrating. She's also been doing a whole lot of pushing and hitting (mostly of Jasmine) and speaking rudely. The only threat that has worked has been loss of dummies.

As of Tuesday she had 2 left after having to throw several in the bin due to infractions. After several nights waking us, I promised that if she did it again those 2 would go in the bin. Sadly (for Madeline) she woke us again, and as promised she had to throw the dummies in the bin. Last night was our first sans dummies, and it was a dream! After a few initial tears, she went off to sleep and we weren't woken up at all! Success! Today at rest time she still wanted them, but calmed down much more easily and quickly.

My back is still quite sore, so your prayers would be appreciated as we head into another week at the hospital next week. I'm also trying to get back into reading the Bible and praying at night which is going ok - I've done it a few times now, back reading 2 Corinthians which I dropped a while back.

Adam is also tired, so please pray for him and all of us. We're half way through Lucy's treatment which some days feels like a good thing and that we've come a long way, and others feels like we're not at the beginning and nowhere near the end.

We are planning to do the Walk to Water with our church tomorrow where we will walk from Cammeray to Balmoral - hopefully it wont be pouring with rain! Walk to Water is an international event put on in partnership with Open Doors to raise funds for Christian communities around the world. Last year about 150 people from Cammeray and Naremburn walked to raise around $3000 to put wells in Christian communities in Nigeria. This year Open Doors are hoping to assist a community in Ethiopia by providing water pumps for crops, generators to produce electricity for 250 households and classrooms for a school at Maychew. We would really like to walk so pray the rain holds off!!

And most exciting is the prospect of a night out with Adam thanks to a kind offer of babysitting! Not sure where yet, at this stage anywhere will be good!

Hope you have a good weekend too, love Liz