A wedding in Sydney

Once again we have been very lax and it has been almost 2 months since we last posted on the blog so I will do a quick summary of the main events:

Dunkeld in the Grampians

At the end of March and the start of the Easter school holidays we had a wonderful 4 days in Halls Gap which is in the beautiful Grampians. The camp site was perfect and the kids loved seeing the kangaroos bounding past the cabin at dusk and toasting marshmallows on the open fire.




We were home for a few days to throw a load or 4 of washing on and then off again for our good friend Roger's and Kat's wedding in Sydney on Easter Saturday. It was a lovely day despite the torrential rain not letting up for 24 hours and the children had an absolute ball especially Mabel, who snared her first boyfriend as you can see!....

Roger, Kat and the Kerr clan at Manly Yacht club

Then on the 8th April we reached a bit of a milestone as Celia had her last lumbar puncture operation and we started to believe that this horrible leukemia chapter may actually be approaching the end (chemo ends in June).

In the 'disco' limo

Next up on the social agenda was birthday number 43 which I really wasn't keen on marking but the girls insisted that we go out to celebrate. So I am waiting on the pavement in the rain for my taxi to arrive when this stretch limo complete with strobe lights, pumping dance music and 12 giddy middle aged woman, pulls up - I was absolutely speechless and I think a couple of tears may even have escaped!  

Andy and I went out to see Jason Byrne the night before my birthday as April is Comedy festival month in Melbourne and although the gig was very funny, Andy did not have the best night as he snapped 2 ligaments in his ankle about an hour before the show. He manged to do it by getting up from his desk at work - now that is comedy!?

So that takes us roughly up to date. I am in the middle of doing a 28 day "Tame Your Temper' parenting course which seems to be having a positive effect on everyone's mood, although Celia is on steroids at the moment and nothing can tame her temper on those 5 days every month. Max bears the physical scars once again as she scratched his neck and drew blood tonight. Cannot wait for next month when this will be over and we get our beautiful Celia back fulltime.

Food Glorious Food

The past 2 weekends seem to have all been about food and drink, which is fine by me!
Last Friday evening was the school's family picnic and disco where the kids dance in the school hall and the parents lie on picnic rugs and crack open bottles of wine on the sports Oval - got to love the Aussie way of life!

Celia with her best buddies at the school disco

 The next day was the Mordialloc Food and Wine Festival (which was very 'sticky' as it was jam packed and a 30 plus degree day) but we managed to have a great day out before the huge storms hit and caused a 12 hour power cut.

Me and Max on the bumper cars at the food & wine festival

Mabel enjoying the slide at food & wine festival

Daddy and Max at Seville Hill Vineyard

Then we went to the gourmet jazz picnic at Seville Hill Vineyard the next day with my old work colleague Tommy, his lovely wife Brooke and their baby daughter Edie. It was all very civilised and Mabel being the music aficionado that she is seemed to appreciate the jazz quartet.  All the kids were really well behaved and I do feel that we have turned that corner with ours. Mabel is still a terror but Celia and Max help look after her now when we go out so all the running around doesn't just fall to me and Andy.  

This Sunday, we had 18 for a BBQ, and as Andy was in charge of the food, we're not talking burgers and snags (sausages for those non-Aussies reading this). Preping for a 5 course gourmet BBQ is no easy task and it was just as well Monday was a holiday for Labour Day (still don't know what that is about?) as I needed the whole day to tidy up. Andy had conveniently arranged to play golf the next morning of course! I must admit that he did deserve the morning off as the food was fantastic and very much appreciated by all. I think he was feeling the pressure to impress now that Heston Blumenthal is in town with his Fat Duck Restaurant for a few months. Melbourne has gone crazy for him and tickets for a seat at the restaurant were balloted and sold out within a matter of hours even though it was $525 a head (no drink included). They are now selling for over $1000 on Ebay - who would have thought snail porridge would be so popular?!

Mabel getting into Sushi

Mabel continues to amuse and frustrate us in equal measure. Her talking is really progressing and she can pretty much say all words except for Celia. She refuses to even attempt it and insists on calling her Harry?!?

I will finish up by mentioning out trip to the beach on the way home from school on Monday (which is a very rare occurrence but shouldn't be as we pass 3 beautiful beaches on our way home each day). Anyway, I was feeling all yummy mummy and took the kids to the beach to 'scavenge' and Celia came back with a cigarette butt asking what it was. When I told her she replied "what's a cigarette?". Its not often you feel proud your child doesn't know the meaning of a word but this was one such occasion!.......

Max gets in on the act

starting a new knee sock / plaid shorts trend

Wellies are the ideal footwear in 36 degree heat of course

I am not sure whether Max is exhibiting attention seeking behaviour because the past few weeks have all been about Celia or if he just has terrible dress sense but something isn't quite right!







I am pleased to say that Celia had a stable temperature all weekend after a few close shaves on Friday when her temperature got dangerously high again.

Celia and Jacob chilling in the pool

In fact, it was Max who wasn't well on Saturday and his temperature reached as high as 39.2 but the thought of missing out on a pool date round at Jacob's house got him out of his sick bed so Andy and the kids had a lovely afternoon round at Kirstie and Dave's while I (and Kirstie!) went on a girls day out which was just what the doctor ordered after the week we've had.

Egg and cress sandwich anyone?

 Me and a few school mums took ourselves off to ladies day at the Werribee Polo and it was a most civilised and enjoyable day out. Can't say much Polo was observed but from a people watching perspective it was a fabulous afternoon!

I was going to say it is nice to get back to normal but since when did pool play dates and polo become normal!?

Home Time

We've now had 36 hours without a high temperature and also a full night without any antibiotics to help out. It would appear that everything is functioning normally again and Celia seems bright and happy. Time to go home.

Feeling Brighter

Celia has been looking and feeling much brighter over the last couple of days.
We've had daughter and dad movie time watching Frozen (twice!), played some games, had a wander about the hospital (drip in tow) to the art room, the cafe and playroom - anything to distract me from working.
The various doctors and specialists still can't find anything at all wrong with her. Nothing. But yet her temperature keeps 'spiking' above 38 degrees at some point every night.
I had a bit of a chat with various doctors yesterday to get the full picture and my conclusion was that they are trying hard to find something but are running out of ideas. The consensus is that they don't seem overly worried so therefore nor should we.
They are taking her off antibiotics, panadol and drip today to see if her body can look after itself for a couple of days...but still no sign of getting home unless the high temperatures stop. We're heading towards week 2 in hospital it would appear.
 

Grasping at straws

Tuesday 17th Feb

So far all tests have come back negative so the doctors then sent in the infectious diseases team. They drew a blank too so now Celia is having an ultra sound on her abdomin and an x-Ray on her chest. Not really sure what they are meant to show (or rule out) and I get the impression the doctors don't really know either hence the 'grasping at straws' title. 

She did manage to get out of bed today, however, and Andy even persuaded her to get dressed so progress is being made. They are trying various combinations of antibiotics and it seems to be taking effect as her temperature dropped below 37 today for the first time in about a week. If it remains stable for 48 hours they will let her go home. 

Having talked to other cancer mums I know that this past week is par for the course unfortunately, we have just been very lucky up until now not to have encountered any unexplained fevers. Andy, however, was convinced there was something more sinister going on and all he could think about was relapse so he did the worst thing possible last night - Google! But after a sleepless night the doctors reassured him this morning that was not the case and her blood counts remain healthy. 

We are now crossing everything and praying that her temperature stabilises and we can get her home before the end of this week.  

Apparently it's Valentine Day

Saturday 14th Feb

Andy and I may have spent most of Valentine's Day apart but we still managed to swap cards at shift changeover (both cards bought at the hospital shop so lucky we didn't pick the same one). I even managed to pen a quick love poem of sorts - "Roses are red, Violets are blue, If I do tonight and tomorrow, can you do the following two?" - who said romance is dead......
Unfortunately Saturday morning saw no change to Celia's condition so I took Max and Mabel up to the hospital in the afternoon. We ventured down to the hospital's cafe and sat at an outside table as it was a beautiful day plus I thought fresh air would do Celia good. After 5 minutes, however, she was struggling and wanted to go back to bed.  Usually when she is sick the only things that can bring a smile to her face are Max and Mabel but not today so Andy left with the kids and I settled in for a long evening. The hospital is pretty deserted at weekends as they try to discharge as many patients as possible on a Friday. All the playrooms are shut, the Ronald McDonald room has reduced hours and there are no play therapists so the atmosphere on the children's ward is very flat which is most frustrating if your child happens to be inconveniently sick outside Monday to Friday working hours!?

I saw a few parents today who were obviously at the start of their cancer journey; the shell-shocked expression and red hospital bag were the main giveaway signs.

The Redkite charity give all parents one of these red beach bags when your child is diagnosed with cancer so when you pass another parent with 'the bag', you swap empathetic smiles because even if you don't know each other, you both know a lot of the the same people!

Her temperature was still 38.8 at midnight so it is unlikely we will get out tomorrow as it needs to be stable for 24 hours.