High Temperature - after a fun weekend with Dad

It's been a while. That's probably a good thing because in Maintenance phase then no change is a good sign. In the last couple of months Celia has been doing fine. Her chemo dose was reduced to half what it was previously and as a result her body is coping well. A couple of weeks ago it went back to to 3/4 dose and, whilst she has shown occasional signs of tiredness, there have been no other issues.

Cue...Monday 4am very high temp...dad has to cancel flights to Sydney for a planned business trip and instead spend the day in Monash hospital.

Perhaps we overdid it at the weekend having far too much fun whilst Lydia took herself of walking at Wilson's prom with a dozen other kinder mums. We had football, swimming, Mabel birthday picnic, play centre, cake, fish and chips and even managed to keep the house looking reasonably respectable. All that must have tired Celia out a bit because just as Lydia arrived home on Sunday night, Celia started to feel yucky and her temperature headed steadily northwards. We decided to hold off until the morning but at 38.8 degrees at 4am (during one of the many Mabel night time interruptions) it was time for an early rise and a trip to see the doctors.
By 2pm, with some antibiotics and a few tests she was allowed home. We're back in tomorrow for more tests but hopefully that will be it for the latest little episode.
Celia's main concern in all this...tears because she will miss her piano lesson on Tuesday.
Still, at least she got a hug from Ariel today.

Celia with princess Ariel

 

Plenty of Challenges

It has not been the easiest of weeks.

Since leaving hospital last Friday Celia has had a few teary mornings at school - mainly because all the other children are doing intensive swimming lessons this week and she is not allowed to for fear of infection.

Her blood results on Monday were still low so she is not yet back on chemo.

She's been a bit tired and down generally and we thought signing her up for gymnastics would boost her confidence and give her something to look forward to. She's been talking about it for weeks and really looking forward to joining her friend Sarah in a Friday class after school. She lasted 15 minutes - all of which was spent standing in the middle of the floor, not moving and crying for mummy. Not a great success really. Refund please?

It has subsequently emerged that she has conjunctivitis. Cue lots more tears and hysterics trying to get drops in her eyes. She looks terrible, but should be fine in a day or two...just in time for a week of steroids and lumber puncture if her body can take it

All of a sudden Mabel's nocturnal wanderings (she spends 2 to three hours every night between 1am and 4 being wide awake and refusing to stay in her bed) seem the least of our worries.

Thank goodness for Max! Our terrible twos and stroppy threes monster has become a (comparatively) model four year old. Well done for coping with the craziness and emotion all around you son! And I don't just mean from your siblings. 

 Although last Friday was a happy day because Celia got out of hospital, there was also a little bit of sadness too as it was Dr Eva's last day before she left for her new life with her new husband in Zurich. Eva has been Celia's consultant since the week of diagnosis and she is so amazing with her. I am sure there was a tear in her eye when I told her about Celia being teased at school and the advice she gave Celia on how to deal with it was so wise and heart felt that she has actually been ten times more helpful than the resident child psychologist! So next week we get to meet our new consultant - Good luck to them as they will have very big shoes to fill. Thanks for everything Eva.  

Back in hospital...it had to happen sooner or later...

We've been so proud of Celia's improving health and her record of never having been re-admitted to hospital (overnight) since her first 10 day bout of treatment - something almost unheard of for leukaemia patients.

Anyhow, just 2 weeks after returning from a wonderful long and relatively 'normal' family holiday in sunny Queensland the record finally ran out. 15 months after her last night in hospital, tonight Celia and Lydia are once again back on Ward 41 North at Monash Medical Centre. 

I'm doing full daddy duty - home made thai spicy dippers for dinner, bath, hair wash, stories and two tired babies fast asleep by 7.30. So far so good, until Mabel inevitably wakes up at 1am as she has done every night for weeks! 

Celia's been tired for a couple of days and yesterday her latest blood test showed her lowest neutrophil reading for over a year. This means she has zero immunity from any virus and has caught something minor (a cold?) which is now driving her temperature through the roof. 

Anything above 37.8 degrees is deemed to be dangerously high at the best of times. Combine that with no immunity and it means immediate hospital admission. Last night her temp reached 38.7. We waited until this morning before going to hospital (earning ourselves a firm but clear reprimand from the doctor in the process) and then found that by mid morning she had peaked at 39.4 degrees which is the highest either of us have ever seen. She's fine now - a drip all afternoon, some sleep and some panadol has made her feel fine and brought her temp back to normal. 

The best guess so far is that she'll be in for two or three days for various tests and monitoring just to see what small virus she has picked up. Her chemo has been stopped which means her neutrophil readings should improve quickly. So all being well our house will be full again by the weekend. We're not at all worried at this point. Every single one of our other cancer family friends have been through this on several occasions. It is simply just something that happens as part of Celia's journey. 

More soon.

AK.

Icecream in Port Douglas

On the way to Green Island, Great Barrier Reef

The training wheels are off!

In my last post I forgot to mention Max's incredible achievement of going straight from his balance bike to a 'big boy' bike in about 15 minutes which isn't bad for a 3 year old! We secretly hoped this would spur Celia on to ditch her training wheels but it had the opposite effect and she refused to go anywhere near her bike for weeks.
 That was until we went to the fantastic bike track at Karkarook Park a few weeks ago - she either got on her bike (minus stabilisers) or she got left behind.
 Normally this sort of ultimatum would have resulted in total meltdown but she gingerly agreed to let Andy hold her shoulders and after one complete loop of the 1km track she gave it a go herself and she was off! She was ecstatic, screaming "I can do it, I can do it!" It was the most animated we've seen her since diagnosis so it felt like we'd reach a real milestone.
 Max turns 4 later this month but we had to get him a bike ASAP as he had learnt on one we'd borrowed from the toy library so here he is with his early birthday present, pleased as punch!

Celia also had her confidence boosted by a visit to the hairdressers as they managed to get her hair into a braid and of course the obligatory glitter came out! Candy hairdressers is where we went last April when we cut her hair off and donated it to the cancer charity wig maker so our first return visit was another big milestone in my book.
She continues to enjoy school (most of the time) and the majority of meltdowns are restricted to the 5 days a month when she's on steroids.  Her blood counts remain high and fingers crossed this week's will be the same as we're due to fly to Cairns at the weekend for our long awaited, very overdue, twice previously cancelled, Palm Cove holiday!!! 

Mabel continues to amuse us all but in a busy household everyone must pull their weight so as you can see she has been earning her pocket money by doing the dishes, assisting Daddy in the kitchen and helping me clean the windows - with her tongue no less!

    

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?....

 

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