Sunday, October 31, 2010

Soggy sausages

Sorry for the gap between posts... just couldn't get here this week.

We are fine - Lucy is well, with no fevers so we have thankfully been at home.

In an effort to avoid the troop of 'trick or treater's' who invariably knock on our door on October 31 only to be disappointed, this afternoon we headed to Bronte beach for an evening bbq. We had thought to have a little walk along the Bondi to Bronte walk and see some of Sculptures by the Sea, but ended up being all a bit late. Anyway, all was going well (despite lots of traffic on the way!) with much fun at the playground, and Madeline especially enjoying chasing birds.
Bit of a fun (for Lucy) swing which was probably a little close to the sand for a girl in her situation (ie with a central line and dressing!).

However, just as we started to bbq the heavens opened! Poor old Adam faithfully cooked the sausages in the rain whilst we girls huddled in a shelter. What a man!

So we didn't get to see any sculptures, but I think the girls enjoyed it anyway.

Lucy has started to lose her hair again (which she hasn't since the first cycle of chemo) and I am finding that quite hard. Though I've always known it could happen I think I got quite used to the idea that it wouldn't. She lost a fair bit at the beginning, but was never even close to bald, and lately it has all been growing back quite well. Maybe it's the different drug she had this time, but it looks like she will lose a fair bit :(

Adam is away a couple of nights this week, so your prayers would be appreciated - both that Lucy would stay well and that I would cope alright, and that Adam would be safe. I am finding things at home to be hard work, especially with a certain pair of girls who are 3 and 5 respectively! Anyone got any foolproof methods to stop sibling arguing (esp at 6am!). We are all weary and at times overwhelmed, so please pray we would persevere and hold onto God's unchanging grace and trust in his faithful goodness.

Wednesday, October 27, 2010

A rare event


Mmmm, temperature of 37.8 this evening.... Hoping that it goes down overnight, otherwise we're back in hospital! And after a good blood result today showing her platelets to be up a little bit, avoiding the need for a transfusion, that would be disappointing.

I thought I'd better take some photo's of Lucy in the bath - not just because she absolutely LOVES the water, but mostly because it's a bit of a rare event! As you can see she has a dressing (looking a little soggy in this pic!) over the entry site of her central line. When she has a bath I have to redo the entire dressing including retaping the line to keep it safely secured and with a bit of slack in case of little hands giving it a tug. It's very tricky to do without another adult around, so I usually only do it when Adam is with me, or when I'm feeling exceptionally capable and game! A friend told me recently that her son succeeded in pulling out his line a while ago so it does happen.... I finally figured out that if I tape the lines over her shoulder to her back then they don't dangle in the water and are out of reach. There should be some parents handbook with tips like that!

Anyway, we're looking forward to the end of treatment and to the day when her line finally comes out and she can have baths more easily, as well as go to the beach and swimming again. She simply loves the water and it's so lovely to watch her enjoying it. Check out those arm rolls!

Hoping the next post is NOT from the hospital!

Saturday, October 23, 2010

Ministry Lucy style...


Home again!

Lucy finished her treatment at about midday on Thursday and we were out of there! All good - perfect temperature, no vomiting or anything to keep her in hospital, so now we can really say 5 down, 1 to go!

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.
Take Tuesday for example.....

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.


I was so struck by God's kindness in this circumstance, and, as I have often done since Lucy's birth, thought to myself "well maybe this is ministry Lucy style". I'm hoping she'll teach me how to use these situations to point people to Jesus and the God who, even (or especially!) in confronting and hard places, shows such kindness to people.

Wednesday, October 20, 2010

Almost 5 down....

Hospital is fun!!

Cuddles for new friend Clown.
Looks like we'll be able to go home tomorrow - praying for no fevers to prevent us. I'm quite in awe of Lucy and her bouncy happy little personality that is just continuing to blossom despite chemotherapy and being stuck in one room in the hospital. She's winning hearts everywhere, with nurses and doctors coming in to visit just to say hello. Such a treasure, who is teaching us lots about what is important in life. We are so thankful for what looks like being another event-free chemo treatment, and pray that the next few weeks as her bloods drop and she becomes more vulnerable to infection wont see her back in hospital.

We can almost say 5 down, 1 to go!

Monday, October 18, 2010

Back where we started!

Knocking down block towers with gusto!


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

We're in!

Well we've made it into hospital!

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 home...

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....

video

video

Monday, October 11, 2010

Holding onto the good things....



Good things about not being in hospital -

1. Pancakes for Saturday breakfast

2. Yum cha for Saturday lunch

3. Take away Thai for Saturday dinner (notice a pattern..... we REALLY didn't feel like cooking or even reheating, other than the pancakes!)

4. Going to church (although it was a bit a of teary morning!) together.

5. Getting some time to myself over the weekend to sew a skirt and visit a lovely handmade recycled timber furniture shop (where we got our dining table years ago) to ogle at nice stuff and resist purchasing urges...

6. Finding out the outside freezer was accidentally unplugged so I could cook a whole lot of stuff today that was partially defrosted with Mum on hand to clear out the other stuff in the freezer.

7. Finally catching up on washing from last weekend....
8. Being able to buy Emma new sneakers to replace the holey ones she's been wearing for ages....

9. Reading stories to my girls tonight.

10. Just not having to be at the hospital.

I almost cried when the doctor told me on Friday that Lucy's bloods weren't recovered enough to start the next cycle of chemo - literally almost cried, there was welling going on. Rather than dwell on something I couldn't change I have decided to look for good things about not being in hospital. Of course the longer we are delayed, the longer the whole thing goes on, but I really can't be upset with Lucy struggling to grow neutrophils now can I?!

Anyway, as you can see from the list above, there are some good things about not being in the hospital even though we want to get this all over with....

I had a bit of a feel in Lucy's mouth tonight, and it's starting to feel a bit lumpy in there - so maybe we're on the verge of seeing some teeth!! Apparently it's quite common for babies with down syndrome to have delayed eruption of first teeth - some kids don't get any till after 2 years old, and often in a wierd order. Anyway, we haven't seen any sign of any till now despite red cheeks since about 4 months old and many comments of 'she must be teething', but maybe she's working on teeth rather than neutrophils....

Anyway, no beds were available today, so we'll try again tomorrow. Hold onto the positive man!

Friday, October 8, 2010

Not my best day

It started with the sad news of the death of someone I knew of from cancer - a wife and mum of 2 little boys who died after a 2 year battle with the disease.

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

A long weekend in the mountains!

Well we didn't think we'd pull it off, but it's happened! We've got to go away for a few days over the long weekend!! Lucy was threatening with temperatures of 37.5 on Wednesday and Thursday, but she stayed below the magic 38 and we got in a little holiday, which has been lovely!!

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!

Sunday and Monday were very rainy and foggy so no little bush walks (besides a brief attempt by Adam and Peter and some of the kids which resulted in a very wet group of people), but we enjoyed time relaxing together and also with the wonderful Chapmans as we celebrated Madeline's 3rd birthday - HAPPY BIRTHDAY MADDIE!!! The kids seemed to like the 'pinata cake' - it took quite a bashing before giving up it's treasure, and we had the lolly man make a special indoors appearance which was a bit wild, but Madeline had been talking about it for weeks so we couldn't disappoint....

Adam and I are still recovering from our sickness - both really tired and going to bed early, but mostly feeling ok in the day. The kids are all pretty good now, although Jasmine sustained a pretty impressive black eye by whacking her eye on the couch not long after we arrived here! We are so grateful that Lucy seems to have avoided any sickness!

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!