Celia makes it into the local newspaper....

Despite our efforts to keep news of Celia's condition and progress limited to a fairly small group of friends and family, many of our Melbourne friends seem to have other ideas. The fundraising efforts for the Children's Cancer Centre Foundation have gone into overdrive with the latest appeal making the local paper

http://www.theweeklyreviewbayside.com.au/story/1530460/baysiders-embrace-fitness-challenge-to-help-support-brave-hampton-east-girl/?cs=1473

I think we will just have to embrace it, raise the fundraising target to $10,000 and get our running shoes on. Watch this space...

Stage 2 coming to an end

We only have about a week to go of the consolidation stage and then we will enter Interim Maintenance. Basically this means the daily oral chemo will  change to intravenous chemo every 10 days and they will ramp the dosage up each time so it will be a more intense phase although she only needs one lumbar puncture. She had an echo cardiogram yesterday to check that her heart is normal and strong enough to cope with this more intensive period.
Celia is still in great spirits although a little feisty at times and Max's face has been scratched on quite a few occasions. She has also reverted back to being a complete scaredy cat at the sound of any loud noise.  I found her screaming in the garden on Thursday and when she eventually calmed down I discovered it was the wind in the trees that had freaked her out. We then went to the park for a bit of tree climbing and she had another screaming episode because a man about a kilometre away was riding a lawn mower. Maybe the MRI thing effected her more than I realised.
 We have a house full of snot and coughs again and Celia is not  escaping this time. It would be typical if the

first week that we don't actually have any procedures, we need to go in for a bad cold! 
With regards to the other two neglected children, Mabel is loving her new (ish!) bouncer/walker  and Max appears to be toilet trained. We bought him a new Lego set last Sunday and told him he could open it when he had 4 straight days of dry pants and next morning he asked to put his Thomas pants on and we haven't had one accident since! I've just tempted fate again, haven't I!?.....

MRI results in

We had some good news yesterday when Celia's MRI scan came back all clear. Her speech is still stuttery at times but by a process of elimination the conclusion is that it's related to the chemo they put into her spinal fluid and not to the cancer or a blood clot etc.
Today is Wednesday operation day again so they will continue with the alternative chemo via the lumbar puncture and see if that reduces the side effects.
Celia continues to be in great form - which is more than can be said for the rest of us who are suffering from the first colds of the winter.

Fundraising passes the $1000 mark!

Chantal, Wayne & Natalie on Sunday post run

As I mentioned in a previous post we have been overwhelmed by the support we've received to date and only 7 weeks in to this long journey we have already hit $1000. Chantal, Wayne and Natalie kindly offered to run the Great Ocean Road half marathon on Sunday in support of Celia and raised over $800 for Ronald McDonald house - Thanks!
We have also set up our own fundraising page with donations going to the Children's Cancer Centre Foundation (see 'links' section) and various other friends have been fundraising in the guise of lingerie parties, careers counselling, a Burpee Marathon at a local gym as well as others doing sponsored walks and 10ks. I felt compelled to join them so I've signed up to do my first 10k in about 6 years i.e. since having children, so I promise any donations received will help me train harder!

On the hospital front we had the brain scan this morning and after a session with a play therapist the doctors felt confident that She wouldn't need an anaesthetic beforehand. Anyone who has ever had an MRI will know that it's quite a daunting experience even for an adult and although she cried a few times, she was on the whole amazingly strong and very chuffed when presented with a Dora Bravery Certificate afterwards. Still no results back yet so will update in our next post.

Celia's mood continues to improve every day as does her walking so hopefully she will start to build up her leg muscles soon (I was shocked to see her legs waste away after only 10 days of inactivity). We had a lovely trip to the aquarium this weekend which is always a big hit with Celia and Max, and primary school open day season has kicked off so we now need to focus on Celia starting school next February like any other
 normal 5 year old.

Chemo Barbie

...well, Barbie's good friend to be exact. Amongst the hundreds (seriously) of presents Celia has received in the last few weeks this one courtesy of Mattel is one of the favourites.

On the health front, Celia's mood is good, with the odd moody outburst. Her speech is still a bit eratic at times and we are waiting for an MRI scan. She is now walking again, including stairs, and as the photo shows, is feeling pretty happy. Looking forward to the weekend after a very long working week.

Celia's first visit to kinder

As you can see, Celia popped into kinder for a very short visit yesterday and it was lovely to see how much everyone had missed her. They had a little question & answer session and naturally enough the first question was "Why are you wearing that on your head?" and Kirsty the teacher explained that the medicine Celia was on made her hair fall out and then we all moved on to what we all did on Mother's day. I have realised that kids are actually far more accepting of physical changes than adults and Celia is totally unfazed, in fact I caught her with her dress up round her neck yesterday showing off her port to Henry!
She got tired after about 30 minutes but is very keen to visit again soon and I was totally overwhelmed by the ginormous box of presents they'd bought her. She is one spoilt little girl these days!


Her mood continues to improve and she is Mabel's doting big sister again. We managed a trip to the park and she walked from the duck pond to the playground where she gave Mabel her first swing.

We have had hospital trips today and Monday this week so far. We called the doctors about her disconnected speech and they think it may be a rare side effect of the spinal chemo drug so we are waiting for an MRI appointment and until the brain scan can confirm everything is OK, they have changed to a different drug which is not clinically proven to be as effective so fingers crossed we can revert back next week.
We had a lumbar puncture today and it is hard to believe how quickly she's become accustomed to all the procedures. She actually smiled today when I told her she needed to have a general anaesthetic and said "oh please can I have the strawberry smelling gas!" and she doesn't bat an eyelid at a finger prick any more. She is one brave cookie.

Happy Mothers' Day

Every few days brings new interesting experiences in child leukemia world. Celia has continued to recover well in the last few days. She's much happier and is walking much better. Since the encouraging news of Tuesday she has embarked on a new stage of treatment known as 'Consolidation' - no steroids any more but chemo taken daily by tablet at home, together with a continuation of antibiotics and various anti-bacteria and infection treatments. The only little worry is that Celia's mood is perhaps just a little too happy. She's definitely acting in a slightly weird, space-cadet type mood most of the time. She talks incessantly from morning to night in rather strange bullet-point and very disconnected sentences. We'll watch that closely and hope it is just the effect of the new drugs - it is certainly much more pleasant than zombie Celia of the previous few weeks.

Today was Mothers' Day in Australia and Celia happily helped make a card for mum and loved the experience of serving breakfast in bed. It's been a beautiful sunny weekend so we had plenty of time outdoors enjoying the garden, the park and (probably) the last barbie of the season. Our Scottish mate Tommy came round with his dog and I had a good long Skype chat with my old mate Alex. We're looking forward to three more visitors this year now - Lydia's sister Julie arriving soon, Alex and Lesley in October and my sister Ruth and family at Christmas. Celia is really excited about that one - it gives us something positive to look forward to.
The cards and presents keep arriving thick and fast - thank you everyone. And we have now managed to sort out a new donation page for all those people who keep offering to send money. We'll post the details in a day or two.
All the best from a positive, sunny, Melbourne - definitely a Happy Mothers' day.