Slowing Down

Celia remains in remarkably good spirits week after week. Meanwhile, every 10 days the chemo doses are increased to a higher level. Her latest chemo day was Wednesday. Her planned lumber puncture operation was postponed a week. The doctor just felt it would be more effective a week later in the protocol. The higher doses are understandably having a few small side effects. Celia has been tired & grumpy recently and feels sick sometimes. But on the whole, things are still great and everyone is excited about Max's 3rd birthday, Julie's last few days with us, Roger coming to stay and the Lions coming to Melbourne.

Dad Time

Last weekend Lydia and her sister Julie took a well deserved break on the Mornington Peninsula for two days. It is fair to say that the strains of dealing daily with three young children are taking their toll and so, thanks to the generosity of my colleague Jane Hallam, the girls had some R&R in the form of wineries, hot springs and long costal walks in beautiful winter sunshine.

Meanwhile in Melbourne it was dad's turn to manage the children. On Saturday we all went sofa bed shopping and came back with no sofa bed but two new sleeping bags. It's a start. In the afternoon we made pancakes which went down very well with the fresh lemons from our garden (with sprinkles -aka hundreds and thousands - and sugar). Bed and bath routine went pretty smoothly and operations were completed right on schedule in time to sit down with a large vino tinto spot on kick-off for the first Lions test at 8pm.

On Sunday, with Celia feeling great and clear blue skies crying out for a day trip we all wrapped up warm and headed to the zoo. We had a wonderful, full-on day seeing almost all the animals, eating fish and chips, ice lollies, lots of toilet trips and very few tantrums. Max was very vocal in his enthusiasm for the monkeys in particular - running, jumping around and screeching in a manner that bore a strong resemblance to many of the animals themselves. The only dad errors of the day were forgetting to get ketchup for the chips and forgetting that Celia is now scared of some very strange things. Lions, tigers, gorillas and elephants are all fine - but taking her near the hobby horses was met with screams of terror. Max was vey happy to ride alone and talk to complete strangers and fellow jockeys about how much he liked the scary tigers.

Everyone had big sleeps in the car on the way home, Mabel had her bottle an hour late (and survived), dad made special pasta for tea and we all played 'camping' before bed time. I knew the sleeping bags were a good buy. Basking in the glow of my new super-dad status, my bubble was burst in style when Lydia arrived home and kindly pointed out that it was inappropriate to have all the contents of the bedroom, playroom and living room piled together into one 'tent' at 8pm on a Sunday night when pyjamas had yet to be adorned. Oh well, all good weekends have to come to an end at some point.

I like having leukemia!

Yes, these were Celia's first words the other morning as she bounded onto our bed with a big smile! Naturally I asked her why (suspecting that the presents were the reason behind it) but no, apparently it is because we allow her to have the yucky medicine with a thimble full of fizzy drink and as this is the only time she ever gets fizzy pop it is worth having cancer just for that - Coca Cola's marketing people would have a field day with that!

Me and Amy unwinding with a glass of bubbles

As you can see, I was living it up at Crown Casino last night at the 'Diamonds are a girl's best friend' ball. This was a fundraiser for Challenge (kid's cancer charity). I went with my new friend Amy who is a another 'leukemia mum'. We only live a few streets away from each other and they are in the same boat as us (i.e. all their family are back in Britain) so it has been fantastic for both me and Celia to have others on the same journey so close by.
We had a good night overall but there were a lot of tears as some amazing mums told us about their cancer journeys which was very brave as there were more than 1500 women in the room!
Then Tracey, the manager of Max's crèche, asked Celia and I to attended a small presentation at the end of today's session. I suspected Celia was going to received a present but not only did she receive a gorgeous teddy but I was also presented with a cheque for $5,490! Yet more tears were shed as I fought to control myself - once again I have been overwhelmed by the local community's generosity. We must be the Children's Cancer Centre Foundation's top fundraisers two weeks in a row!
 

Still on Track

We had a bit of a wobble in the last 24 hours. Thursday's blood test apparently showed up some 'blasts' (cancerous cells) in Celia's blood. A relapse at this early stage would have been very bad news indeed. She was invited to Monash for a retest this morning (the doctors strongly suspected a misread of the test). After a full day of waiting, the good news was confirmed. It was indeed a false alarm. The long recovery remains on track. We'll sleep better tonight than we did last night.

The Burpee Challenge

Niamh and the burpee girls hard at it.....

 Sunday was the Burpee Challenge day - Clare Green who is a fellow UK playgroup mum is a trainer at a local gym and she persuaded the owners to run the burpee challenge to fundraise for Celia and boy, did they fundraise! I think the figure raised is approaching $5000. We really have been overwhelmed by the support of the local community here.


To prove I did a few burpees too!

Monday was a public holiday here (for the Queens Birthday!) so we took Julie down to the Mornington peninsula for a drive and some lunch. It was a lovely day and we will try and fit another trip down before Julie leaves to sample some for the vineyards and coastal walks (minus kids - Andy is way overdue some one on three quality time!)

The weather has been pretty miserable this week much to Julie's annoyance as for once it has been lovely back home. We are going to stock up on craft materials and Julie is going to get to grips with her arty side.
I meanwhile need to start the arduous task of compiling all the documentation we need for our permanent residency application which has not started well as first thing they wanted was a copy of my old passport with my Australian vistor's visa from 11 years ago and I haven't got a clue where that would be.


Julie and Mabel at Portsea Hotel

On the treatment front, we went for blood tests yesterday at Sandringham and all results were good so next Monash visit isn't until Monday for chemo so Celia is a happy bunny!


Auntie Julie arrives

My sister arrived on Tuesday night and the kids have been loving all the attention. Julie came with us to the hospital yesterday which was the start of the next treatment phase (interim maintenance) but as per usual it was a case of arrive at 9am, wait around for 2 hours, see the doctor for 20 minutes then wait around for another 2 hours before they administered the chemo. As I had to collect Max from crèche at 1pm, Julie had to stay with Celia while she got her chemo (it involves a needle prick so Celia in a bit of a state) and I think she was a bit shaken when I went to collect them from the hospital. They warned us that Celia may feel sick later in the day but ironically she was in great form and it was Julie who was violently sick (must have picked up a virus in the hospital). She continued to vomit all night and is recovering now - fingers crossed the rest of us have escaped.

We had a nice winter's day walk on the beach this morning - the sun was out but the wind was very chilly. Not exactly tropical Queensland which is where we should have been on the 8th June - this is the second time we've had to cancel our holiday to Palm Cove as we had booked to go last September but then I got taken into hospital for nearly 3 months and now we can't travel for at least a year due to Celia. We are due one mega holiday next year!

      

Challenge Cancer Dads

As we've mentioned before, having a child with cancer opens up a whole new world of social interaction opportunities. Tonight was my first experience of a cancer dads night out courtesy of the Challenge Charity. Always up for free food and beer I happily took up the invite to a corporate box at Ethiad Stadium. My (nominal) team St Kilda were soundly spanked 130 something to 60 something by North Melbourne. But with caviar, smoked salmon, steak and wine on the menu then at least the effort was worth my while.
In terms of the social interaction it was definitely an 'interesting' mix. Cancer does not discriminate about who it chooses to impact so there was a great and humbling opportunity to meet with all sorts of dads, each unwittingly thrown into the deep end. Some of the stories of children with various tumours to the eye, jaw, brain and stomach were downright scary. Is it right to feel relieved that our child 'only' has leukemia?
Of the fathers with ALL leukemia (like Celia) then that wasn't exactly positive either. I met one guy whose daughter was in a wheelchair for 3 months, another whose daughter went deaf and is still deaf two years later and a third dad whose son unfortunately didn't make it and died two years after diagnosis having relapsed four times. My conclusion: Celia may be in good humour right now, but the reality is that there are many more very tough times ahead.

These cancer charities are here for a reason, and the reason is that dealing with cancer is very, very difficult. The caviar was great guys but the gritty stories was what the night was all about. Thank you for a great night Challenge - keep up the fantastic work. I had a timely reminder to be ready for the long fight and to keep on believing. The road is a long one and we have only just turned the first small corner.

Meanwhile, at home, Celia keeps on working on her new bald fashonista pyjamas look. Who cares about the next corner - Celia's living for today and long may that continue.