Friday, July 30, 2010

All looks about the same but just waiting on todays blood results. I'm feeling a bit defeated on the home front and like I've lost my place there a bit. I went home last night and it was just difficult. In their own way everyone was pushing the boundaries (Emma didn't want to wear her school uniform to school, Jasmine fluffing around taking forever to eat breakfast and get dressed, Madeline hitting her sisters and pretending she couldn't hear me talking to her....). Not that bad in the great scheme of possible behaviours, but after many many days of the same things being issues before Lucy was sick, and with my whole new lack of patience I just feel icky after I spend half my time at home being cranky mum. Mmmmmm...

Of course we did have some nice time now that I think about it. As always, reading books is a great way to head off some unpleasant behaviour and spend nice time together doing something constructive. Maybe I should just write on my hand in big letters "READ BOOKS" when I go home so I don't forget, particularly if it's raining like it was yesterday. Baby Brains is always a big hit with my kids for some reason. We're also enjoying A Proper Little Lady and Not a Nibble sent to us recently by the lovely Davis' - thank you!... what are you reading??

I'm very grateful to Mum for staying at the hospital yet again last night as Adam got stuck in Dubbo. Thankfully Lucy slept well and was happily sitting up in bed clapping and banging her drum when I arrived. At least she doesn't yell at me! I'm sure I'll be stressed in the future if Lucy is particularly delayed with speech, but some days I'm very grateful that she can't talk yet.... (is that bad to say?....).

Enough moaning, here are some pictures.

It is so wonderful to feel safe in the hands of our Father who knows us and loves us - and whilst I cannot imagine life without Lucy, or imagine how we will get through the next 4 or 5 months or longer, or if she relapses after getting into remission, what a comfort to know God promises to sustain and care for us and our family and give us what we need.

Wednesday, July 28, 2010

Well it looks like Lucy has kicked the fevers and is doing ok on that front, but sadly we wont be able to leave hospital until her neutrofils (kind of white blood cells) start to pick up. She has 0 at the moment, and needs to get up to 0.2 before she could possibly go home, and up to 1 before she can start the next round of chemo. She may surprise us and start producing some soon, or it could take a while (like another week or so). Her other white cells have increased a little bit today, so it may be that the neutrofils will follow soon.

I seem to have left the cord to attach the camera to the computer at home so I can't add a photo from today - but just imagine Lucy having fun playing her doggy xylophone....

I'm very grateful for visits from , Nicola, Julianne, David and Vic over the last few days - they do much to lift my spirits and encourage my heart on this long road, so thank you for making the big effort to come. Lucy doesn't mind seeing you either!

It's hard to believe but it's Lucy's 1st birthday next week. If she's well she'll be having chemo which is a bit of a bummer, but hopefully she wont be feeling unwell. We're trying to work out what we can do to celebrate in here with the family (lets face it, the 1st birthday is more for the family than the child isn't it!). Maybe just a little cake.... It feels completely wierd to me that it has been a year since Lucy's birth. A crazy, difficult, heart wrenching, joyful, encouraging year. So many things come to mind as I reflect on the last year. So much has happened and life has changed so much. In God's kindness we are all still standing, learning to take things one day at a time, trusting in Him to give us what we need, which He does in abundance.

Monday, July 26, 2010

Just a quick update - Lucy's temperature has spiked again, but she has had some panadol and is now finally asleep after a long day with lots of crying and unhappiness. She seems quite uncomfortable, especially when filling her nappy, so I'm a bit concerned she might be starting to get some ulcers or something.

Lucy did get to enjoy some time with the lovely McKerlies today, which also gave me a nice break to have some lunch. Thanks so much! It's nice that she's asleep though!

Please pray the fever thing would resolve soon.
On Sunday afternoon Lucy spiked a fever and we had to return to the hospital. We're back on the Camperdown Ward, and Lucy is less than excited to be here. Lots of crying and being generally unhappy.

We are sharing a room again (with a teenage boy!) which makes everything a lot more stressful. It means I'm a lot more concerned about Lucy crying, especially at night (which she did at length and considerable volume at 3am this morning having wet through all her clothes!) and the daytime routine is much harder. She had to have lots of observations overnight as she was on antibiotics and also having blood transfusions as her platelets were down to 7 (lowest ever) and haemoglobin down to some low level I can't remember. She's currently asleep in the pram as the bed was just too light and noisy.

Please pray her fever would stay down, and that she'll respond quickly to antibiotics if there is an infection and that she'd recover her happy temperament! I don't feel like I'm coping very well in the hospital any more so please ask for patience and the ability to hold it all together for me...

Anyway, sounds like she's waking up so I'd better go sort her out.

Saturday, July 24, 2010

Hi all, sorry for a quiet week. Thankfully it's been quite uneventful from a Lucy point of view! She's been a bit vomity, but otherwise quite well. Her blood levels are low, but stable, and she hasn't needed any more transfusions this week although she's likely to need some next week. She's eating reasonably well, not drinking heaps - she's settled on pretty much just having a breastfeed in the mornings and maybe a little at night, and we're trying to get her to drink some formula from a cup, with mixed success (well 'success' would be putting way too positive a spin on it....).

Adam has been away for work part of this week, and whilst we are well supported with great help from our families and friends, I can't help but feel bit like my legs are missing or something when he's far away! Since Lucy has been sick Adam has been the organiser extraordinair keeping everything going at home. Even though everything was covered (and sometimes doubly covered - sorry for the mixups Katie and Penny!) I just feel like my brain can't cope with the logisitics required to keep everyone cared for and in the place they should be. Combined with a foggy head, fractious children and a bit of vomit, there were a few ugly moments. It's feels ironic that Lucy is actually the easiest of the bunch to handle!

Anyway, true to character I figured cupcakes were the answer and yesterday we tried a new recipe for chocolate cupcakes that included cutting out their centres when they were hot and poking in marshmallows which went delightfully squoogy! Very good, and also enjoyed by little cousin Sophia.

I've been struggling to read the Bible at all lately, and had a thought driving to the hospital one day that maybe some music would help me get back into the Word. For someone who has never bought Christian music other than Colin Buchanen and a few Emu CDs I wasn't sure where to look. Remembering a song my lovely friend Karin shared with our Bible Study this year I thought I'd get the CD that song was on - Casting Crowns Livesong or something. Anyway, here are some of the lyrics of their beautiful song "Love them like Jesus" which helped to refocus my thoughts and feelings about life, the kids and all that....

Just love them like Jesus, carry them to Him
His yoke is easy, His burden is light
You don’t need the answers to all of life’s questions
Just know that He loves them and stay by their side
Love them like Jesus

Lord of all creation holds our lives in His hands
The God of all the nations holds our lives in His hands
The Rock of our salvation holds our lives in His hands
He cares for them just as He cares for you

So love them like Jesus, love them like Jesus
You don’t need the answers to all of life’s questions
Just know that He loves them and stay by their side
Love them like Jesus
Love them like Jesus

Hopefully Lucy will be out of hospital for the next 10 days or so before her next biopsy and 3rd round of chemo which I think will be 4 days straight in hospital. We are thankful as ever for her great tolerance of the treatment so far.

We are hoping to have Lucy baptised at church soon - maybe after the next round of chemo. We're looking forward to celebrating what Jesus has done for her (and all of us!). It is so wonderfully comforting to know she (and all our family) is completely safe in His hands, whatever happens.

Tuesday, July 20, 2010

This little girl is amazing! Lucy is continuing to go well, with a good report card from the clinic. Bloods are going well (no need for any transfusions today) and she is still well, free from any infections or other troubles. Her white cells are dropping which is to be expected after the doses of chemo, so she will become more susceptible to sickness over the next week which is a bit of a dud because I'm sick! Not feeling too bad now, but last night and this morning was feeling decidedly unwell.
I think as a result of feeling unwell I've also felt a bit overwhelmed by everything and wanted to hide in a hole for a while. It's probably good that having 4 children (and a husband!) doesn't allow too much opportunity for that, and I'm feeling more positive and together this afternoon. I think my mood is often a bit weather dependent so yesterday's miserable grey clouds didn't help. Hooray for sunshine and blue sky today!!

I've been feeling the lack of pictures the last few days so here are some of Lucy at home yesterday....

And here are Lucy's bravery beads!

Cure our Kids runs this programme to reward children with cancer for the immense courage they need to undergo treatments. Each time your child undergoes a treatment they are entitled to another bead (see the index below too) so as time goes on the child will gain an increasingly decorative set of beads representing all of the courageous steps they've taken. Lucy might be a bit little to understand all this now, so for the moment they can be parents bravery beads! When she's older we can show and explain them to her. How lovely is that!

Sunday, July 18, 2010

All went reasonably well with the needle, she was asleep at the time so at least she wasn't crying before the needle from being held down. I think that being held down is actually the thing she objects to most. The needle obviously woke her up, but after a brief cry was quite happy. Once again not much of a reaction and we were able to come home a few hours later. We have to give her eye drops a few times a day, as a common side effect of the high dose cytarabine chemotherapy is sore and itchy eyes. She HATES having the eye drops, and is quite an expert at screwing them shut tight. Thankfully we only have to do them for a few days.

Anyway, we are back at the clinic on Tuesday, I will try and get my act together with some pictures tomorrow!

Thanks for your continued thoughts and prayers,

Saturday, July 17, 2010

Lucy is going well with her chemo this time - about to get a big needle in the bottom, so maybe she wont be happy after that. If she's well, there is a chance we could come home this afternoon!

Yesterday was a bit frustrating and I had a few moments of sitting down breathing deeply while I got over myself. Sharing a room is a bit tricky, and I was starting to feel like I wasn't being given enough information from the staff about where things are at, having to chase things myself. Anyway, I calmed down and now all is ok, I even got to have a bit more of a talk with the fellow and asked for more information about the bone marrow biopsy.

It was a bit of a hard night with a lot happening in the ward, and our little room mate was a bit unhappy, but thankfully Lucy slept really well and wasn't bothered by the crying or yelling or constant beeping of machines as their alarms went off. We did sleep in till almost 8am though.

Lucy has been pretty unbothered by the chemo this time, except for a bit of a vomit yesterday. No rash in sight so that's good. Anyway, better go as the big needle is on it's way....

Thursday, July 15, 2010

We're back! Today a bed became available and we returned to hospital for the next part of Lucy's chemo treatment. We are a little bit disappointed that this time we are in a double room (not sure how that works with a baby!) but hopefully it will be ok. Is it ok to pull the curtain and not talk to the other people if you don't want to? I assume it is, but so far it's all a bit unknown. Adam is there tonight after an aborted trip to Bathurst, so maybe he can give me the lowdown in the morning....

The best news we had was that Lucy's bone marrow biopsy results from last week were really good. The doctor advised today that no leukaemia cells were visible in the marrow. This doesn't necessarily mean that there aren't any there, but it means they are not at a level that can be detected. These next cycles of chemo are to get rid of any remaining leukaemia cells, and to try and stop them coming back.

So anyway, it's the best news we could hope for at this stage, praise God!

Wednesday, July 14, 2010

Hi there, sadly I'm writing this post from the comfort of my couch at home, rather than the hospital. Lucy is still well, but unfortunately there were no beds available in the oncology ward today! Feeling a bit frustrated and like we just want to get on with it, but the doctor assured me that waiting a couple of days will not be detrimental to Lucy's treatment. Apparently the reason for the break in the middle of this cycle of chemo is because often children with Down Syndrome are quite sensitive to this large dose. This break in the middle is to help them cope with it better, and another day or two isn't a problem. Obviously we have to trust the doctors in this (and the whole treament!).

Anyway, hopefully tomorrow a bed will become available and we will be able to get going. I will write again when we get there. Please pray Lucy will keep tolerating the chemo well, and that any reactions (like the rash she got last week) will be kept to a minimum.

Love to you all,

Sunday, July 11, 2010

Well it's starting to feel like we are yo-yo's - bouncing between the hospital and home. And all of a sudden I understand why people are desperate to leave the hospital when they're there! In our first couple of weeks I was too scared to come home, and whilst it was hard being away from home, in a way I felt more relaxed being there than the thought of bringing Lucy home. At least in the hospital help is only a button away! But now, with a little bit of experience, some understanding of how this process works and a bit more confidence in our ability to spot a problem with Lucy, I'm loving every moment we can get at home (well almost every moment - you know what I mean!)

Anyway, it was a good weekend - yesterday we braved the crowds and dared the weather by going to the zoo. We survived the crowds and the rain held off and we had a great time. Madeline was especially taken with the seal show (and let's face it, it's pretty cool!) and the lion. The tiger was stalking around it's enclosure which was amazing, and we even saw a baby elephant have what could only be described as a tantrum!

Yesterday was also our 11th wedding anniversary, and rather than go out again in the evening Adam went nuts at Thomas Dux and we had a gourmet feast at home with a lovely bottle of wine. Happy Anniversary Adam, it's a privilege to walk through life with all it's ups and downs, laughs and tears, joys and sorrows, hurts and happiness with you. Bring on the next 11 hey!

Today we once again enjoyed church together as a family (we love you guys so much and are so encouraged by you!), with a relaxed afternoon and even a Sunday afternoon stroll (with pram and 3 bikes).

Tomorrow we are back to the hospital for a checkup with Lucy in the clinic, so hopefully all will be well with that and we'll be back home in the early afternoon. So far so good with Lucy - no effects yet that we can tell of the chemo.

Here is Lucy's latest trick - clapping!! (with a bit of help from Emma....)

Friday, July 9, 2010

Home again for the weekend! Lucy has had the first 2 days of this cycle of chemo and has been allowed out for the weekend. She came out in quite an impressive rash today, as a result of the medicine, but it has calmed down now and she's doing ok. She also had her first "asparaginase" which is a big needle in your bottom! For some reason this particular drug needs to go into a muscle rather than through the central line. A lot of screaming apparently... Lucky for me Dad was on duty for that one!

The last few days Lucy has been doing a lot of refusing of breastfeeding, and I'm thinking we might be on our last legs in that regard. She had a bit of a feed tonight, but not much otherwise today or the last few days. I can tell my supply is dwindling, so it all might come to an end soon. I have found there is always a little grief when I finish feeding a bubba, just that that special time between us is over, and particularly with Lucy who is our last one (as far as we know or plan....) this could be it for me. I felt ridiculous when I got a bit teary when I asked the nurse if I could speak to the oncology dietitian as Lucy was refusing being fed! Anyway, she's given us some special formula for kids at risk due to medical conditions to try to get her used to. I will try and keep expressing for a bit and put it on her weetbix or something. Who knows, maybe she'll get back into it, or not.

The girls spent a great day today with the Johnstons who went crazy and took them (and their own kids!) to the Aquarium on the bus! The kids hadn't been there before (had to do some last minute coaching about what an 'aquarium' is and what lives in one! - Jasmine's guess was "aquaries"). They had an absolutely fantastic time - thanks so much Cameron and Karina, that was brave and wonderful of you!

I finished my 'vintage' quilted picnic rug yesterday - probably one of the roughest jobs I've done, but I love it nonetheless. Fabrics from my grandma's and Adam's mum. Love that part the best! Maybe it can get it's first run on the weekend.

I've been feeling incredubly tired this week, and a bit flat generally. I was thinking as I drove out to Westmead the other day that I've had about enough of this now - but there's at least 5 months to go! I've been having lots of chats with other parents, and I think I've got to my limit of hearing other hard stories for the moment. It's getting a bit overwhelming! The last family I met had to go to France to have their son's tumour removed and have radiotherapy because noone in Australia had the extertise to treat the particular tumour he had (there are drs who treat adults with the same condition, but none to treat a child!). I spent a fair bit of time hiding away in our room yesterday and today even while Lucy slept which gave me a bit of a break! Hopefully time together as a family will fill me up (as well as the kids and Adam) to keep going next week. Note to self: grace for today, mercies new every morning.

Hope you have a great weekend!

Wednesday, July 7, 2010

We're back at the hospital, and Lucy has already had her bone marrow biopsy and her first dose of the second round of chemo. It's been a very long day - we arrived at 7.20am and didn't get into our room till about 4.30pm. Lots of sitting around but not much sleep (by Lucy!). Oh well, she's in bed now drifting off to sleep while I write.

This round of chemo is much much higher dose than last time, and we can already see some reactions - a bit of a rash on her tummy and red itchy eyes. All very common and to be expected I'm told. I'm not sure how likely it is that we'll get to go home on Friday - I suppose time will tell!

It was great to spend almost a week at home with everyone. Yesterday I had the day on my own with all the kids (first time in a while) and we had a lovely relaxed day, even managing to pull off making cupcakes, about which everyone was very pleased. In true girl form, there was also a fair amount of drawing and colouring, some barbie action, a bit of telly, everyone's current favourite of toasted sandwiches for lunch, with a great roast dinner when we finally made it to the Burkes' for dinner and a sleepover. Here are some gratuitous pictures of the girls.... sorry, none of Lucy this time!

Madeline wanted to double dip the beaters to continue the licking fun!

Yellow icing was ordered, with sprinkles and hearts to decorate.

On arriving back in the ward this afternoon Lucy said hello to all the nurses and was appropriately happy and smiley. Don't you just love it when your kids are nice to other people?! When Jasmine was little she went through a (fairly long) period of being very un-keen to look at or be held by anyone other than me. Gladly she did get past that and is probably now our most social little person who doesn't think twice about striking up conversation with anyone she crosses path with. I'm very grateful though that Lucy doesn't yet seem to be showing any signs of clingyness or separation anxiety - it makes for a much easier time in hospital! Combined with great sleeping ability (at least at night) she's a model patient really.
I feel like I'm getting to know a few parents around the place as we continually find ourselves in the same places at the same time. In recovery today I met another mum whose 17 month old son was diagnosed with leukaemia 2 weeks ago. It was interesting to talk about our different recent experiences. Another mum whom I met before was talking about the tumours her daughter has that they don't know how they will respond to chemo. Full on conversations, and so often I just don't know what to say. Sometimes I almost don't want to have them - it feels like I can barely deal with my own situation, let alone take on, even just by listening, to other distressing stories. They are a long way from your general park or playground chat! Please pray that I will be sensitive and good at listening, and somehow point people to the amazing God we know and trust with our lives and the lives of our children.
I still sometimes do a bit of a double-take as I take in the reality of being in this place where all the children I see have cancer. I found out the other day that while 45,000 adults will be diagnosed with cancer in NSW this year, only about 250 children will be diagnosed with a form of cancer in the same period. Cancer is overwhelmingly an adults disease, but for some reason a small number of children end up with it, the majority having leukaemia.

And our little Lucy is one of them.
Please keep her in your prayers, I am a bit apprehensive about what this big dose of chemo will bring. She's so little - which in some way makes coping with the procedures less difficult, but ... she's so little! Such a treasure, we love her so much.
I hope you are all enjoying the school holidays and whatever change they bring to you! I am in great need of a cup of tea so will sign off for now.

Monday, July 5, 2010

What a lovely, perfectly ordinary weekend! Dinner and an evening with the fabulous Draneys on Friday, Pancakes on Saturday (please excuse the PJ's in the picture...), followed by Emma's soccer match, then a birthday party in the afternoon. We had a relaxed evening at home, and Adam hired a movie (but it was too scary for me - seriously I reckon PG is about my limit these days and anything in the 'thriller' genre is just ridilculous!). On Sunday we were thrilled to be able to go to church as a whole family! So lovely to see our friends and learn and encourage one another. I even got to go shopping in the afternoon for a little bit and buy a few bits and pieces. Of course there was also a fair bit of football watching by the boy of the house.

Lucy is going great guns! We visited the oncology clinic at the hospital on Friday, and all her blood levels are continuing to rise. I had noticed (well it was hard to miss!) that since her blood transfusion on Wednesday Lucy had had very red cheeks. She wasn't hot but just very red. On Friday it became apparent that perhaps she wasn't quite as in need of the extra blood as the doctors had thought.... no matter, she's just chock full of red blood which will come in handy in the next few weeks.

The skin around Lucy's central line has been quite red and sore looking the last week or so, and she definitely doesn't appreciate people mucking around with the dressing. I had my first go at changing it over the weekend, and thankfully it's all looking a lot less angry. The community nurse will come today and change it all again and just check that it's ok.

We will be back at the hospital on Wednesday morning (7.30am!!!) for a bone marrow biopsy and then, if there is a bed available, she will start the next round of chemo. This time she has 2 days of treatment, 5 days off, then another 2 days of treatment. As always, it's 'wait and see' in terms of how much she will need to be in hospital, but it's a much much bigger dose of stuff this time, and the doctor has warned that by the day 6 or 7 mark she might be quite unwell. It's unreal that she's tolerated the first round of chemo so well, so keep praying that she might continue to do so, even with this bigger dose.

The girls have loved having Lucy home, and today we are spending the day at home with Grandma - so far not too many arguments or injuries.....

Will update again soon, love Liz

Thursday, July 1, 2010

We made it home!

Lucy has been doing so well, with blood levels rising to a point where the medical staff were happy for her to come home for a few days before the second cycle of chemo starts next week. Hooray!

So, late yesterday afternoon (Wed) Lucy and I packed up the not inconsiderable pile of belongings we had accumulated in our 3 1/2 week stay in hospital and came home for a few days. Well Lucy didn't help much, but we had about 3 pram loads of stuff, including a couple of big bags of medicine and supplies, together with a timetable for her medication! See our new "Lucy's medicine cupboard" below!

One night a few weeks ago when Lucy was in the hospital I came home one night to be with the girls, I got all a bit upset as I lay reading with Emma, missing the little person who was supposed to be in the cot in the room they share making the gorgeous talking noises that she does. Last night as I came to read the last chapter of Charlie and the Chocolate Factory, Emma whispered "She's back here with us" with a big smile on her face. And it was so lovely to lie reading and hear Lucy babble and gradually fall off to sleep as she always used to.

Today we took the opportunity to visit Early Ed (where we take Lucy for early intervention services) to show off her new sitting and getting up on all fours abilities. Otherwise we spent a delightfully normal afternoon at home with Grandma, and a visit from Nanna and Poppa. And now there are 4 little chickens tucked up safe in their beds, and for a few days we can enjoy
some together time.
Below is a picture of a chair I have been rebuilding at my now finished upholstery course (well one of 6) and of which I'm very proud! Now I just need to find some time to sand back and refinish all the chairs....anyone handy with a sander? I think we'll just sit on them in their current state and worry about sanding sometime down the track.