An off day for Celia

The new protocol started today (delayed intensification) and it didn't get off to a good start as Celia had a bad reaction to the general anaesthetic; she woke up kicking, screaming and writhing about like a wild animal. After about 30 seconds we noticed she hadn't actually opened her eyes so they said it was an anaesthetic tantrum so quickly knocked her out again. When she came round the second time she was groggy but acting normal, however I was a bit shaken.
She then threw a fit when I told her she had to go for her second flu jab.  I had assumed that because finger pricks and blood tests were now a walk in the park all injections would be fine but not so. She vividly remembered the first round a few weeks ago and she was hysterical. The play therapist tried to calm her down but as soon as we approached the corridor she was howling the place down and in a horrible case of deja vu, it took me and two nurses to hold her down . Why she can't be given the flu jab while she is under general anaesthetic confounds me!
 Once she had calmed down from the flu jab it was time for her chemotherapy which is administered through her port, and the hysterics started again. Not surprisingly she fell asleep in the car on the way home as she was totally exhausted.
On the whole she has been coping with her treatment amazingly well and she is still bubbly Celia 90% of the time but there are glimpses every now and then that this whole thing is taking its toll. There appears to be a new phobia every other week for example; lawn mowers, the wind and lifts to name but a few. She also mentioned her hair a few times this week and said that she wanted hair for her birthday. As it is in 5 weeks I told her that wasn't possible and I also broke it to her that she wouldn't be having a party as her birthday is towards the end of this phase and we have been warned to expect a decline over the next 8 weeks. Instead we will have a mega celebration when she is five and a half (she is slowly coming round to the idea!)

Max taking his role as a pirate very seriously

Max's favourite dress up at playgroup

Outside of hospital, it has been birthday season with a party last Sunday, this Saturday and yesterday. Saturday's party was a Pirate BBQ so I visited the fantastic Bayside toy library and got the perfect costume for Max. He took a bit of persuading as normally Max will only dress up in dresses (tutus and pink polyester nighties are his favourite as you can see) but once he had the outfit on he was transformed into the meanest pirate in the southern hemisphere!

Normality of sorts has resumed over the past 2 weeks - Celia attended kinder for a few hours, we made it to Monday playgroup 2 weeks in a row and Max started swim lessons on a Saturday which he loves. And Reece, the Wednesday nanny, continues to be my life saver (well, maybe 'life saver' is an exaggeration but sanity saver is not!)
       
 


Doing my bit for the fundraising effort

There's not much to report this week and it's all quiet on the chemo front since we are between protocols. Celia still had blood tests of course but results were all positive so she made it to kindergarten for a few hours this week. All the kids (and now me) have the cold but they are still in good spirits.
The highlight of my week was doing my first 10k run in about 6 years on Sunday. My time wasn't brilliant but I made it without stopping and managed to stick with Andrea the whole way round. It was her first run and she was doing it to fundraise for the leukaemia foundation (her daughter Bettie is Celia's best friend). It was a beautiful sunny morning, although it was only 5 degrees at the start, and I got to see some new parts of Melbourne which is always a bonus.
 I think we have now raised in excess of $12,000 for the children's cancer centre foundation and there are still loads more fundraising activities to take place which is amazing.
 

A quick update

Celia had her latest round of chemo on Wednesday. She also had another lumber puncture operation, a flu jab and a hearing test. She was really excited about the whole thing - she loves hospital at the moment. All went well and we now move in to the next phase of treatment - "delayed intensification."

As the name suggests, this is not a pleasant or easy phase but we are all positive and looking forward to pushing on through. 

Managing the weekly workload is much better now that our Wednesday nanny has settled in and Mabel is becoming a happier 9-month old - getting into the really fun age bracket.

Celia went to kinder yesterday where they had a puppet show that explained cancer to the children.
Max is at a new Tuesday childcare centre too. He also restarted his swimming lessons this morning - which he absolutely loved.

Looking forward to a winter BBQ this evening and enjoying the golf on the TV from Scotland. Can't wait to see Liverpool FC in Melbourne this Wednesday. 

Must go and bake a cheesecake for the BBQ now. 

All the best. Andy. 

Things you didn't expect to hear from a four year old

"Daddy, can you shave my head please"

"When can I have my operation? I am really disappointed that they cancelled it today"

"I liked staying in hospital. You can watch TV while you eat your dinner"

"I think my teeth are shrinking"

"I don't want any party food or cake" 

There have been a few ups and downs over the weekend. Celia's appetite is definitely dwindling and she is tiring out every day by late afternoon. We were worried that her temperature was creeping up high on Sunday night but it came down again and she was much better on Monday and Tuesday. 

Over the weekend she went car-shopping with dad and birthday partying (to friend Daisy's party) with Mum and on Monday we enjoyed a full family day out to see Disney on Ice. Everyone loved it, especially Mabel who was merrily dancing along to the music. A big a bag of popcorn seemed to bring back the appetite too. 

On the social and sporting front, what a weekend to be from the British Isles? Lions powerful victory on Saturday (our latest night out in years), Murray wins Wimbledon on Sunday (waking up from midnight until 2.30am - thank goodness it was only 3 sets) whilst also flicking to Fox Sports to see GMac lift the French Open at the same time. 

So all in all, things still ticking along ok. We have a hospital free week this week (fingers crossed) so time to get some chores out of the way and get our PR application finalised. 

Getting back to 'normal'

Last week was pretty hectic as I tried to cram in as many appointments as possible before Julie left. As Julie flew out, Roger arrived (well there was actually one night of overlap which the kids loved as they got to sleep together in Celia's room - hence a sleepless night for me and Andy!) and it also happened to be Max's 3rd birthday so we all went out for a birthday dinner as I had cancelled his party (poor Max).
He didn't seem to mind and as crèche was finishing up for the holidays the ladies made him think the party was for him and not end of term.

Roger was down for the Lions rugby match and as I'd arranged a babysitter for 3.30pm, we got to soak up the prematch atmosphere which was amazing.
We were all wiped out on Sunday and by Monday I was craving some normality and routine.

Unfortunately that takes the form of hospital visits and blood tests these days and it was back to hospital on Tuesday for tests. Unfortunately Celia's results showed that she's neutropenic (very low white blood cell count) so today's lumber puncture operation got cancelled again. So more blood tests on Thursday and chemo plus potentially the lumber puncture on Friday. She still seems fine and as you can see, looks well.

Reese our new nanny started today and she will now come every Wednesday. It has taken such a weight off my shoulders but I was so keen not to waste one minute of her being here that I hardly stopped to eat today! Celia was a bit upset at the start as she still cries if I leave her, but after an hour she was a changed girl and announced that they were all off to the park - I cannot tell you how exciting it was to be able to clean an empty house!

And here are a few pics of Julie's stay - Kids miss you, Skype soon.


at Hampton marina

Sunset at Mornington

Thelma and Louise at Arthur's Seat

Portsea surf beach