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.

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.