Christmas with the cousins

 I will let the photos do the talking but suffice to say the children are having a ball with their cousins so it has been a wonderful Christmas so far. The only low point was the wet weather on our holiday to Wye River last weekend and I'm afraid to say that by Monday morning we admitted defeat and came home a day early but looking on the bright side, I think we needed the extra time to get prepped for Christmas day which was a sunny 31 degrees.

Max and Sam dinosaur hunting near Wye River

Uncle Gary the human packhorse - Max not happy about being on last!

Waiting for Santa on Christmas Eve

Andy and Gary prepare the ham

Christmas Morning carnage

Christmas day Aussie Style

Celia and Talia

The leftovers tasting better than the Christmas dinner

Celia's bloods have been holding up so she had her monthly visit to hospital for intravenous chemo on Friday. This also means she is on steroids for the next 5 days which is never easy especially when Andy and I plan to have one precious night away together tomorrow. I broke the news to Celia tonight and as expected her reaction was pretty extreme. There will be lots of tears tomorrow before we leave but I need to remember it is the steroids that cause these mood swings and we will get sweet, good natured Celia back in a few days time. Happy New Year!

Sticks and stones.....

Unfortunately Celia has received more  insensitive comments at kinder from a different girl this week ("we're all going to the cinema for X's birthday but you can't come as girls with no hair aren't allowed in", "don't touch my doll as she doesn't like girls with no hair" etc). She even had a boy at school orientation day come up to her and say "I don't like you" when he'd never even spoken to her before. To make matters worse the oral chemo has resulted in a horrible rash on her face so I can only imagine the teasing will get worse. My fear that this would scare Celia away from kinder/school has however been unfounded and she is actually in great spirits. When I asked her what her reaction was to all these comments she just shrugged and said "I told them to stop being silly and walked away" - she is so wise beyond her years and I don't doubt it is because of what she has endured these past 9 months.

 The weekend we just spent on cancer camp in Anglesea probably contributed to this boost of confidence and good humour. I will let the pictures do the talking but they do not do justice to the wonderful Camp Quality volunteers that gave up their free time (they all have full time day jobs) to make the most amazing weekend happen for children with cancer and their families.

 

 

 

 

 

 

 

 

I am not sure when the next update will be as Andy's sister and family arrive with us next week and then we are all off on holiday for 4 days followed by the main event so busy busy but wouldn't have it any other way. This will most definitely be one to enjoy and remember - Merry Christmas!  

First big milestone reached - Maintenance!

We breathed a big sigh of relief on Tuesday as Celia's blood results were good enough to proceed with the lumbar puncture and chemo on Wednesday which marked the start of the maintenance phase.
We had the usual problems coming round from the general anaesthetic so they are going to try a different drug next time as something is clearly not agreeing with Celia. She was is bad form for the rest of the day as she was so exhausted after the anaesthetic tantrum plus her neutrophils were quite low so they delayed the start of the oral chemo.
 I didn't actually realise how many new drugs she was going to be taking in this phase - I was just focusing on the fact that we only need to go to Monash once a month for intravenous chemo. In addition to her mouthwashes and antibiotics, she has to take steroids for 5 days every month and two forms of oral chemo, one daily and one weekly (if her neutrophils are high enough for her to withstand this so she still needs to have regular blood tests at the local hospital).
Within 24 hours of taking the first steroid dose Celia was a lethargic, teary mess so now the reality of maintenance is sinking in and I'm thinking that sigh of relief was perhaps a bit premature as we have 2 more years of this.

She was in particularly bad form on Friday and refused to go to kinder yet again. This has been going on for a over a week so I knew it wasn't just the steroids or low neutrophils. After a lot of coaxing she eventually opened up and admitted it was because she's scared of one of the other girls at kinder who has been teasing her about her hair. I feel a bit torn as it would be easy to say 'there are only 3 weeks left so you don't need to go back' but that is not really dealing with the issue and what if someone at school teases her next term, she can't just choose not to go to school so I will try and take her again next week but I imagine there will be lots tears.

Despite all the moodiness we have been getting into the Christmas spirit and to celebrate Celia starting maintenance we put the tree up and made some decorations. We also attended the Challenge Christmas party yesterday which was a fantastic funfair at Sanddown Race Course. Amy's son Dominic was there but he was Celia's only 'cancer pal' as Charlie and Seth were admitted to hospital last week which serves as another reminder that we are nowhere near home and dry as they have both been in maintenance for months.

  

Fundraising past the $20,000 mark!

On my last post I talked about Anita raising over $1,000 for our chosen charity but after I published that post I realised how slack I've been about updating you on the amazing efforts of other friends and colleagues.
Our friend Alistair back in Scotland for example ran the Glasgow half marathon last month with his 3 year old son (I'm sure the toddler dash wasn't 13 miles long but still a good effort on Euan's part!) and together they raised over  $1,300, so check out our fundraising page for more info as we have now past the $20,000 mark which is unbelievable.(The page says $16,000 raised but we also had nearly $5,000 donated in cheques which went direct to the charity).   Which reminds me - I need to send a thank you note to the CEO of the Children's Cancer Centre Foundation because she posted me a voucher for $300 worth of group training sessions. She won it in the raffle at the charity luncheon I was at 2 weeks ago and as she doesn't live locally and knows that I do, she sent it to me which was so thoughtful of her. Now all I need to do is mentally prepare myself for a few 6 a.m. boot camps on the beach!

We've had a house guest over the past week in the form of Ed the kindergarten elephant. We have to make a photo diary of everything we do with Ed during the week so Ed got to have a finger prick at hospital, a trip to the toy library and an outing to the Melbourne museum.


The most important event however, was on Thursday when Celia had her first school orientation day. I was a bit apprehensive as this was the first time I'd dropped her off  but as you can see she was fine and I didn't get a second glance leaving the classroom. She talked nonstop on the way home about the new friends that she'd met so no worries about her starting next year.

I also used the time that Celia was at school to do something nice with Max for a change so we went to this new café that is also a dog grooming parlour - sounds weird but it was great as the back wall is glass so the kids can watch the dogs being clipped and groomed as they drink their baby chino!

   

Maintenance (Remission) within touching distance

Celia has had her last intensive chemo session before we enter the final phase which is called maintenance (remission). We are not out of the woods however as this phase lasts 2 years and involves monthly chemo and lumbar punctures every 3rd month but it will be so much more manageable. Her hair is really noticeable now and she hardly ever wears headscarves any more so her confidence is growing daily. Unfortunately so is her stroppiness and now she is overtaking Max in the tantrum stakes.

I picked up the dreaded Gastro bug last week and then I passed it to Max so he has been sick for the past 3 days and Celia is not happy about someone else getting attention and sympathy!

We did manage to have a family outing to Santa's Magic Kingdom however as Challenge Cancer Charity gave us free tickets and the kids loved it as it was their first time at the circus. The giant penguin seemed to be their favourite bit though!





  I was on the receiving end of Challenge's generosity on Saturday as well as they held a cancer mums Christmas lunch at one of most beautiful vineyards I have been to here (Yering Station in the Yarra Valley).

Amy and I at Beautiful Yering Station

I got to talk to a lot of mums that I hadn't meet before as there were only 3 of us from Monash cancer centre, all the rest were from the Royal children's hospital, and once again I realised just how lucky we were and how unbelievably well Celia is progressing with her treatment. Some day I will tell some of the other children's stories but right now it would feel like tempting fate so I will hold off.



The Monash Mums - Amy, Me and Niki

The weather, food, wine and company were all wonderful so a heartfelt thank you to Challenge and to Ann who owns Yering Station as she makes this lunch possible every year as she was a cancer mum herself (and thanks for the beautiful table flower arrangement which I also won!)

Finally I wanted to tell you about a lovely lady that we bumped into for the first time a few weeks back at the local farmers market. Anita is pregnant with her third and we got chatting as she will soon have 3 kids with a similar age gap to mine. When she found out that Celia had leukaemia she insisted that she wanted to fundraise for our chosen charity and true to her word that is exactly what she has done - she ran 14kms in the City to Sea run on Sunday and raised $1000 for the Childrens Cancer Centre Foundation. I have yet to meet with Anita and say thank you in person even though she lives just a few streets away but Anita, if you are reading this I promise I will arrange something soon!


Anita at the finishline - well done you and bump!



A busy few weeks

The fact that the blog has not been updated in over 2 weeks indicates that we have had a busy couple of weeks. I am glad to say that most of this was 'good busyness' i.e. social events and not just hospital and doctor visits although there were a few of those too.

Two weekends ago our friend Roger came down from Sydney to see us and as you can see uncle Roger is always a big hit with the kids....

 

Then we had Halloween which I was dreading due to Celia's Vampire phobia. We didn't venture out of the house but of course the first trick or treater that came to the door was a little boy in a vampire mask so she ran off screaming leaving the poor boy very miffed!

Last weekend we had the pleasure of attending our friend Tommy's wedding down in picturesque Sorrento. Tommy is an old work colleague of mine from our London days although as you can tell from the photos he is a true Scot and Rangers supporter therefore he and Andy hit it off when he moved over here to be with his lovely fiancé Brooke. It was our first Aussie wedding and we had a wonderful day (enhanced by the fact that Reese babysat the children all day and most of the night!).

It is what they call Spring carnival in Melbourne this week and for those that aren't familiar with this occasion it basically means the place goes nuts over horseracing, so much so that Tuesday was a public holiday for what is affectionately know as the race that stops a nation. Thursday was Ladies Oaks day and although I didn't actually make it to the races I did attend a Ladies Oaks day luncheon. It was in aid of The Childrens Cancer Centre so a few of my mother's group friends and I went along to Sandringham yacht club in our obligatory fascinators/hats and a select few managed to stretch the luncheon out until 10.30pm! (two of which were of course myself and my friend Michelle) The day raised over $32,000 and there were a few emotional speeches from fellow cancer mums which resulted in some mascara reapplication afterwards!

 

In between all this social activity we've had a few hospital visits (scheduled lumbar puncture and chemo 2 weeks ago, chemo on Friday and an unscheduled visit on Wednesday due to Celia developing a rash around her port which the doctors couldn't identify but which seems to be fading). We also had a few doctors/nurses appointments (Max had a chest infection, Mabel had her 12 month check up and Andy and Mabel had the flu jab which is a requirement for all Celia's family members) and Celia also had 2 psychologist appointments so as I said it has been a busy few weeks which must be a justifiable excuse for not attending to the blog??!......

Max and the terrible 3s

Looking at this photo the saying 'butter wouldn't melt....' springs to mind but over the past 2 weeks this could not be further from the truth. Max's tantrums have escalated and there have been days where every waking moment was  spent either crying or screaming. When he (and I) do eventually calm down I have talked to him about it and as I suspected it's about me and Celia going to hospital. Of course we might as well be going to the funfair for all he knows as he just sees me, Celia and Mabel going somewhere without him all day. There are days when I've had to take all 3 to the hospital but I find it so stressful that I try and avoid it. Mind you, I don't think it can be any more stressful than dealing with Max's constant outbursts these days so I may need to reconsider. In between the tantrums we did manage to have some nice family time. The weather was amazing last Saturday and our friends Andrea and Dan has us and a few others over for a spot of al fresco lunch which turned into dinner as  the children played outside until it got dark.

On Sunday we drove up to the Dandenong hills as one of the cancer charities was putting on a day with Puffing Billy the steam train which had been disguised as Thomas the tank engine. It was warm but very windy so Celia was not happy, however Max seemed to enjoy himself, especially as there was face painting. When we got back Andy took them out to the garden to plant some tomato and strawberry seeds. He explained how they needed to look after the plants and watch them grow but I don't think they quite understood the growth timeframe as 20 minutes later we looked out the widow to find them parked in front of their respective pots patiently waiting.....

The heat was short lived and it has been quite wintery again this week so there has been lots of DVD watching as I haven't the energy to fight it!

 We had another long day in hospital on Monday and again, it should only have been a morning visit for a blood test and chemo but we were there from 9am til 4pm. They are renovating the cancer centre over the next 3 months so it has moved to a room in A&E where there are no TVs or DVD players so time really dragged. I was moaning about this to Andy until he showed me a BBC news story about the NI Finance minister visiting the Royal Sick Children's hospital in Belfast and how some of the facilities are almost 100 years old. He was "shocked and ashamed" by the conditions he saw and although funding has been agreed for a new hospital it won't be completed until 2021 so I quickly reminded myself how very lucky we are having Celia treated here in Melbourne.