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?....

 

Getting back to normality

The Thorns headed back to Glasgow last Friday after another fun-filled week that included Melbourne Zoo, a family photo shoot on beautiful Chelsea beach (Ruth's 40th birthday present) and a trip to the enchanted Maze on the Mornington peninsula. They also managed to cram in the penguins and fireworks on New Year's Eve down at St Kilda but the Kerrs missed all the New Years Eve celebrations as we were tucked up in bed by about 9pm (Andy and myself included as we were recovering from our previous night away which was heaven - thanks Ruth and Gary!)

  



Celia, Max, Mabel and Ellie at the Zoo

Sam 'fishing' in the sand pit!

Andy and Max tree surfing at the Enchanted Maze

Ellie, Talia, Celia and Max on their last day together

Working out how the timer on the camera works

Ellie and Talia - photo shoot stars!

 

Fortunately we had the offer of a house in the Yarra Valley while the owner (one of Andy's colleagues) was away on holiday. It was a great way to get over the post holiday blues which descended once the Thorns left. I must admit to feeling more than a little jealous waving them off for two reasons. Firstly, it made me question where exactly is home for us and secondly it highlighted the fact that we can't go 'home' for about another 2 years. Celia and Max have also been asking when they will see their cousins again and when can they visit their house which of course triggers pangs of guilt and homesickness because I truthfully don't know the answer.
 Anyway, Healsville was the perfect tonic and we had 2 very relaxing days doing very little. 

Sarah's beautiful house in Healsville

We managed one day trip to a local orchard that did tractor rides and fruit picking - Max enjoyed it but Princess Celia was very grumpy as it rained the whole time and apparently she doesn't like fruit anymore!  


Raynors Fruit orchard with farmer Ian (who is originally from NI !)

Picking plums, nectarines and peaches

To be fair, Celia has been struggling to shift a persistent cough so I took her up to the cancer centre this morning and they have given her some antibiotics for mycoplasma pneumonia. That was the first time in a while that I've taken all 3 children up to the hospital and boy, am I not looking forward to future visits as we no longer have the Wednesday nanny.  Mabel was into everything and constantly wandering off, while Max was throwing tantrums left, right and centre.
Doctor Eva confirmed that her treatment will end in October 2015 which feels like a long way away right now but I know the time will probably fly in.  

Celia rocking the pixie hair style

Christmas with the cousins

 I will let the photos do the talking but suffice to say the children are having a ball with their cousins so it has been a wonderful Christmas so far. The only low point was the wet weather on our holiday to Wye River last weekend and I'm afraid to say that by Monday morning we admitted defeat and came home a day early but looking on the bright side, I think we needed the extra time to get prepped for Christmas day which was a sunny 31 degrees.

Max and Sam dinosaur hunting near Wye River

Uncle Gary the human packhorse - Max not happy about being on last!

Waiting for Santa on Christmas Eve

Andy and Gary prepare the ham

Christmas Morning carnage

Christmas day Aussie Style

Celia and Talia

The leftovers tasting better than the Christmas dinner

Celia's bloods have been holding up so she had her monthly visit to hospital for intravenous chemo on Friday. This also means she is on steroids for the next 5 days which is never easy especially when Andy and I plan to have one precious night away together tomorrow. I broke the news to Celia tonight and as expected her reaction was pretty extreme. There will be lots of tears tomorrow before we leave but I need to remember it is the steroids that cause these mood swings and we will get sweet, good natured Celia back in a few days time. Happy New Year!

Sticks and stones.....

Unfortunately Celia has received more  insensitive comments at kinder from a different girl this week ("we're all going to the cinema for X's birthday but you can't come as girls with no hair aren't allowed in", "don't touch my doll as she doesn't like girls with no hair" etc). She even had a boy at school orientation day come up to her and say "I don't like you" when he'd never even spoken to her before. To make matters worse the oral chemo has resulted in a horrible rash on her face so I can only imagine the teasing will get worse. My fear that this would scare Celia away from kinder/school has however been unfounded and she is actually in great spirits. When I asked her what her reaction was to all these comments she just shrugged and said "I told them to stop being silly and walked away" - she is so wise beyond her years and I don't doubt it is because of what she has endured these past 9 months.

 The weekend we just spent on cancer camp in Anglesea probably contributed to this boost of confidence and good humour. I will let the pictures do the talking but they do not do justice to the wonderful Camp Quality volunteers that gave up their free time (they all have full time day jobs) to make the most amazing weekend happen for children with cancer and their families.

 

 

 

 

 

 

 

 

I am not sure when the next update will be as Andy's sister and family arrive with us next week and then we are all off on holiday for 4 days followed by the main event so busy busy but wouldn't have it any other way. This will most definitely be one to enjoy and remember - Merry Christmas!  

First big milestone reached - Maintenance!

We breathed a big sigh of relief on Tuesday as Celia's blood results were good enough to proceed with the lumbar puncture and chemo on Wednesday which marked the start of the maintenance phase.
We had the usual problems coming round from the general anaesthetic so they are going to try a different drug next time as something is clearly not agreeing with Celia. She was is bad form for the rest of the day as she was so exhausted after the anaesthetic tantrum plus her neutrophils were quite low so they delayed the start of the oral chemo.
 I didn't actually realise how many new drugs she was going to be taking in this phase - I was just focusing on the fact that we only need to go to Monash once a month for intravenous chemo. In addition to her mouthwashes and antibiotics, she has to take steroids for 5 days every month and two forms of oral chemo, one daily and one weekly (if her neutrophils are high enough for her to withstand this so she still needs to have regular blood tests at the local hospital).
Within 24 hours of taking the first steroid dose Celia was a lethargic, teary mess so now the reality of maintenance is sinking in and I'm thinking that sigh of relief was perhaps a bit premature as we have 2 more years of this.

She was in particularly bad form on Friday and refused to go to kinder yet again. This has been going on for a over a week so I knew it wasn't just the steroids or low neutrophils. After a lot of coaxing she eventually opened up and admitted it was because she's scared of one of the other girls at kinder who has been teasing her about her hair. I feel a bit torn as it would be easy to say 'there are only 3 weeks left so you don't need to go back' but that is not really dealing with the issue and what if someone at school teases her next term, she can't just choose not to go to school so I will try and take her again next week but I imagine there will be lots tears.

Despite all the moodiness we have been getting into the Christmas spirit and to celebrate Celia starting maintenance we put the tree up and made some decorations. We also attended the Challenge Christmas party yesterday which was a fantastic funfair at Sanddown Race Course. Amy's son Dominic was there but he was Celia's only 'cancer pal' as Charlie and Seth were admitted to hospital last week which serves as another reminder that we are nowhere near home and dry as they have both been in maintenance for months.