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.