2 months in pictures

I can't believe it has been 2 months since I was last on here but since 9 week's worth of updates is just too time consuming to type up, I will lazily revert to a photo update.....

Easter with cousin Louise and family at Lakes Entrance

The cousins enjoying a warm spa after a freezing dip in the camp pool



Our first fishing expedition

Mabel being comforted by Max in the scary Buchanan caves

Daddy's girl

Sibling love

Time for a haircut!

 Celia's blood results remain consistently positive and apart from the odd meltdown going into class (which is not uncommon amongst the prep children) she is doing great. The 5 days of steroids a month are having a much worse effect on her now mainly because the dosage has increased and this month she had to stay off school as she was in such a bad way.
 Max's behaviour seems to have improved however, and he is becoming a great little helper especially in the kitchen - I wonder why......

Max licking the Brownie mixture

 Mabel is as hilarious as ever but still no words so the maternal nurse is referring us to an aural clinic and then either a paediatrician or a speech therapist - at 19 months old I am not at all worried by her lack of speech but this seems to be the way they do things in Australia (especially as every specialist you see is paid for privately by you - cynical, me, never!)......

 

Looking forward

As we are now well in to Year 2 of Celia's treatment I thought it was about time for a dad update and a look forward. Celia's progress has been phenomenal, better than anyone could have hoped for and smoother than many of the other children we have met over the last year. Having said that, there are constant reminders that the journey has a way to run yet. I am going to sound worryingly pessimistic like my mother here! Maybe it is an age thing.

In the last six weeks we've seen the funeral of a young Melbourne boy with the same as Celia (ALL) who was diagnosed just a month after Celia. I was also at the funeral of the mother of a colleague who had battled for 10 years and of course we saw this week's sad news of the passing of NI 5 year old cross community pioneer Wee Oscar Knox.

Most of the time we simply don't notice that we have adjusted to a completely new normal when it comes to Celia. She's clearly more clingy and teary than her peers. She was always quite timid and sensitive and this is now more apparent than ever. She does fall over more than most - especially considering that she doesn't run much - and she continues to be a bit flat-footed when she walks. Again, we bearly notice these things and it is only when others point it out that we see it. It's a new norm but hey, this time last year she was (literally) on her knees! (http://kerrangaroo.blogspot.com.au/2013/05/bye-bye-grandparents-big-day-ahead.html)

None of this is surprising when you consider what her body is still going through. The routine still involves oral chemo every day, additional chemo every Wednesday, Bactrim 3 days per week, daily tablets and ointment for rash side effects, mouthwashes, anti nausea, laxatives. The hardest weeks come every fourth week when in addition to the above she gets intravenous chemo in hospital, a course of steroids that maker her very tired and grumpy and, once a quarter a lumber punch operation to put chemo in her spine. This routine will continue daily, weekly, monthly and quarterly until October 2015. 

Celia's Pharmacy Cupboard

Happy Mother's Day

With this milestone moving closer we are confident enough to look very positively towards the future. This was a lovely Mother's Day weekend. Lydia and I celebrated our 7th wedding anniversary with a visit to a local Italian last night. We've booked a couple of trips home to Europe / UK / Ulster before the end of the year (sans enfants). We go on holiday next month. We have a ski trip planned next year. And we have spent the last couple of weeks getting a little bit more serious about planning our future 'grand design.' We're loving the new UK C4 programme "Building the Dream" now being shown on Australian TV. We are much less sure about Northern Ireland weather having just watched the Giro d'Italia (from county Antrim!). Triple glazing, open fires and good central heating will be priority design features.

The rest of Sunday evening will be spent hoping for a Liverpool miracle and watching a rerun of Eurovision. Can't help wondering how the bearded lady is going down in the homeland. Comedy viewing par excellence. 

Hoping this nice little blend I picked up brings Liverpool some luck

This day last year.....

It was this day last year that Celia was diagnosed with Leukaemia and to mark it we spent the day at an outdoor pool where Celia swam like a fish and ran around like a mad thing which just emphasises how far she has come in a year.
We didn't take any photos as she actually looks pretty awful right now. The rash on her face from the chemo is at its worst and she has big dark rings under her eyes as she's not sleeping very well and school is generally just taking its toll. Unfortunately, the teasing has continued (about her hair and now the rash too) and most mornings she has been crying going into class and won't let go of my hand.
Last Thursday I had the very awkward task of telling two of the parents that their children had been teasing Celia since her teacher obviously wasn't doing anything about it, so we will see if that helps matters.

We had a lovely day on Saturday when one of the cancer charities put on a pirate cruise for the kids at Willamstown yacht club. It was so heartening to see how confident and fun loving Celia is around her 'cancer friends' as opposed to the painfully quiet and timid girl she is at school. Max had a ball too as they armed the kids with water pistols and shooting bad pirates is now his favourite activity!

Mabel continues to make us all laugh as she is at that stage where within 2 bars of any song she is jigging along to the music and both Celia and Max adore her and say she is their best friend.

I am still struggling to find enough hours in the day as the kinder work is constant - last week I had a committee meeting, council strategy workshop plus our annual open day on top of the normal weekly workload of emails, calls and form filling.
We have at long last been granted permanent residency so that has also created a load of  extra 'admin' jobs but only 3 more weeks before we go on holiday for 5 days with Louise (Andy's cousin), Deryk and their children - cannot wait!

Andy and his colleague Kate after the Big Shave

Oh, I mustn't forget to add a photo of Andy from Friday as he and 3 work colleagues shaved their heads for leukaemia and raised over $11,000 in about 2 weeks! No big sacrifice for Andy as he didn't have that much hair to loose plus his motivation was of course extremely close to his heart but for his female colleague Kate I think it took real guts, and as you can see she actually looks a lot better bald than Andy!

Uncle Roger comes to visit

Roger is naturally very fond of Celia, Max and Mabel and he tries to pop down and see them as often as he can but a few weekends ago Bruce was most certainly the main draw to Melbourne. Roger must be Springsteen's most ardent fan and since we were all meant to go to his concert last March but couldn't (it was the day Celia got diagnosed with leukaemia) when we heard Springsteen was coming back to tour, we felt it was a sign we should go - unfinished business so to speak.

Celia is loving school  and it is a joy to leave her off every morning. I am obviously not familiar with primary school goings on but I am amazed at the atmosphere during drop off - they blast out pop music from the speakers (ranging from Katy Perry to the Happy Days theme tune!?)  and at assembly on Monday one of the teachers was getting married so they staged a mock wedding with one teacher being a vicar and 2 others being brisdemaids where they proceeded to dance up and down the aisle to 'I'm so excited'!
Celia's blood counts have been a bit up and down but generally she is doing fine and making lots of new friends (including Thomas her new boyfriend!).


 I am still finding the school/kinder run a bit chaotic and last Tuesday I was in such a flustered state, I fell down the stairs with Mabel in my arms, so no hands to break the fall. I ended up on the wooden floor winded and in a pool of blood from the back of my head but luckily I didn't loose consciousness and Mabel was unhurt so after 10 minutes I got up, wiped the blood off, changed my clothes and took Max to kinder and Celia to school. When the bleeding hadn't stopped 7 hours later I thought I should maybe see a doctor and after collecting Celia from school Andy came home and I went to the surgery where I got stitches.  My bandaged head gave Andy and the kids hours of amusement that evening!
My role as kinder president is pretty full on and 15 hours a week is no underestimation. I am not regretting taking it on but it is a struggle fitting everything in.
Mabel has been ill the past week but she is on the mend now and I have seen a real change in her over the past few days - she may not be talking yet (Celia had about a 60 word vocabulary at this age!)  but she is definitely not a baby anymore - I have a feeling she is going to a be a feisty one alright!

 

A year in pictures

It is not quite a year since Celia got diagnosed but I was feeling reflective so here is the past 12 months in pictures......


This time last year - a normal, carefree 4 year old

Late March - alarm bells rang when I saw her pallor in this photo  



Early April, post diagnosis  - getting her hair bobbed in preparation for the inevitable

Mid April - balding, bloated and unable to walk but amazingly still able to smile



Late April - not able to smile anymore. Unrecognisable.   

early May - The inevitable



Late May - Embracing her new look

June - fed up of feeling 'yucky'



July - visiting her mates at Kinder 

August - getting thigh injections from the home nurse

 September - a nasty fall resulted in a very cut face

October - first signs of regrowth

 November - Our favourite nurse Jody preforming the weekly blood test

 December - Rocking the new pixie cut in maintenance phase

January - starting school

Celia starts school

I quite often get poked, prodded and slapped courtesy of Max and Mabel but yesterday's metaphorical slap in the face was by far the most painful :-
Celia: "Daddy's intelligent isn't he?"
Me: "Yes.....??"
Celia: "but you're not Mummy"
Me: "Why not?!"
Celia: "Because you don't go out to work, you don't do anything"
Me: "I used to go out to work just like Daddy"
Celia: "Yes I know, you've told me that about 8 times before" (accompanied by a huge eye roll)
Me: Speechless.
This conversation came at the end of a day that had seen Max throw several tantrums, all 3 refuse to eat lunch and dinner (I stupidly tried out some new, exciting, 'kid friendly' recipes) and Mabel screamed nonstop at the top of her lungs, so suffice to say that when Andy got home I wasn't in the best of moods.
So this morning I volunteered to be president of Max's kindergarten (seemed like a great idea at 3am this morning!). Not quite sure where I'm going to find the 12 to 15 hours a week that it supposedly takes or what I'll do with Mabel when I have a council meeting but I'll cross that bridge when I come to it.

As you can see, Madame Celia started school this week and so far, so good.
Her favourite thing about school is the Australia song (singing the national anthem in assembly) and she appears to have made a few friends but says she still prefers to sit on her own (?!).
There haven't been any comments about her short hair which is a relief as there were tears last week about how everyone would think she was a boy and yesterday the teacher read them all a book I'd given her about leukaemia and Celia pulled her dress up and showed everyone her port - not sure that is the best tactic for making new friends!

Max also started 3 year old kinder last week so he does 2 x two and a half hour sessions which is nowhere near enough for him but 5 hours is all the government offers and even that isn't subsidised. I can't believe he would be going to school fulltime in September if we were back in Northern Ireland.

On the health front, Celia's blood results from today were borderline so they want us to keep the daily chemo dosage at 100% but go for another test next week. Hopefully school won't take too much out of her but I did notice the chesty cough starting up again this afternoon. Fingers crossed....



 


   

Why does God make it so hot?

This is one of the many questions that get thrown at me from the back of the car and as per usual I didn't have an adequate response - It was a perfectly reasonable question given that we were entering our fourth day of 42 plus degrees and I would dearly love to know the answer myself!
We have been more or less house bound this week as the indoor play centres and shopping centre's air con systems can't cope with the heat. We managed to cool off a bit before 9am by throwing ourselves down the slip n' slide in the garden but after that it hits the high 30s.

 The kids have been 'naked bummies' all week (a turn of phrase coined by cousin Sam aged 3!) and I've not been looking that presentable myself - I am soo not cut out for hot weather.

On Sunday after a couple of days of pure hell with Max, I decided to make a conscious effort to keep my cool (pardon the pun) with Max and for a few days I was seeing positive results but being holed up in a boiling house for 4 days has not exactly been conducive to good behaviour and by yesterday the screaming matches were worse than ever.

I really shouldn't complain as I know plenty of people who don't have air conditioning and I also have quite a few friends who've experienced power blackouts as the energy companies struggle to cope with the power surge but the cool change cannot come quick enough for me.
As for the poor people upstate, I cannot imagine what they are going through right now as bushfires sweep through their towns - as Celia rightly says, why does God make it so hot?....