Countdown is on

It has been a long time since we wrote the blog. I will do a catch up one soon, sharing all our memories of a lovely Christmas, a couple of weekend breaks and a period of almost total normality on the Celia health front. The big news however as of today, Friday 30th January is that we have a treatment end date to look forward to. It was confirmed today that Celia's chemo will officially end in June 2015 so we are into the last 5 months of treatment.
The countdown has started!
Fingers crossed that everything goes to planned and this schedule stays intact. It should align very nicely with our citizenship timeline.
 Life is on the up.
Have a happy weekend everyone...and good luck Andy Murray in the Australian Open final.

Mabel's first day at creche and Celia's first day in grade 1

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