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.




 

I can walk!

These were the first words Celia uttered this morning with a big smile (followed by "I want more money" ?!) Her mood has at last lifted and she spent all afternoon yesterday playing with Max which was such a joy to behold.

Tuesday was a very long day in hospital (up at 6am, not home til nearly 7pm) Celia and I were there for 7am although I have no idea why as they did nothing til 11am and because Celia was having surgery she was fasting since 5.30pm the day before and was crying with hunger by 10am.
She had the port fitted and chemo via a lumbar puncture then later in the day more intravenous chemo. The good news is that her MRD test results (minimal residual disease) came back negative which means she is now officially in remission. The next month should be a less intensive period so she can take chemo orally each night at home with lumbar punctures each Wednesday to inject chemo into her spinal cord.

New look

The time has definitely come to accept the inevitable...

...and 24 hours later a whole new Celia has emerged. Much happier. Much chattier. More self confident. Laughs and smiles with Max and Mabel. A few more tentative shaky steps. Welcome back darling. Keep it up.

To shave or not to shave.....

Celia's hair has been falling out for weeks now but over the past 3 days this has really accelerated and she is now bald on top - combine this with a puffy steroid face and sickly green complexion, and it really isn't the best of looks.  We have obviously witnessed this happening over a period of time so are used to the new Celia but I do worry how her little friends will react when they see her for the first time in weeks as she is almost unrecognisable.
 

We are now at the stage where we need to think about shaving it all off but Celia doesn't want to yet and if she wears a headscarf or hat you can't tell she is balding so we will hold off for now.

 

I have been dreading the hair loss bit. On the day of diagnosis, I remember taking Celia to the supermarket while waiting for the blood results to come back and I couldn't stop stroking her hair. As Andy mentioned I knew in my heart even before the results came back that she had Leukaemia and I was so keen for her last trip out as an innocent, carefree 4 year old to be a special one, I told her she could have anything she wanted in the shop. She went straight to the beauty aisle and selected Hello Kitty clips and bobbles and as I held back the tears I steered her towards the toy and sweetie aisles instead. Having said that, the hair loss hasn't been half as traumatic as I anticipated. It is more of an annoyance to be honest as there's hair stuck to everything and every mouthful of food she takes has hair in it! Celia has dealt with it really well and I suppose seeing all the other children in the cancer ward with no hair has helped normalise it. 

 

Although she looks miserable in the above photo she actually had a much better day yesterday and her and Max sat at the table and worked on a sticker book together for about 20 minutes which is the first time she has done anything other than stare at the TV for weeks.

 

Back to Sandringham for blood tests tomorrow so fingers crossed they don't stuff it up again.



The kindness of strangers (and friends and sisters....)

More blood tests at Monash today as Sandringham (the local hospital) messed up the tests yesterday. We thought she'd need a saline drip as her sodium levels were very low but it wasn't needed in the end. Her neutrophils however are now low and if they don't improve, next Tuesday's surgery (to fit her port) will have to be postponed as there's a risk of infection and without neutrophils Celia can't fight infections. Even Max is familiar with all the new medical lingo and he is now affectionately know as Doctor Max because he marches round shouting "the doctor says drink lots of water" or "the doctor says take your medicine"!
For those that don't know what a port is (why would you!?) it is a catheter that gets inserted under the skin and runs from the vein under the collarbone to the heart and that will stay in for two or three years depending on when we get the all clear. This is how Celia will get her chemo going forward plus any transfusions.
She is still very weak but a bit of strength has come back in her arms so hoping to see improvements in her legs next week. There have been a few more glimpses of happy Celia but there does seem to be a correlation between these episodes and the Oxycodene painkiller, especially yesterday morning when I gave her a dose not realising Andy had already given it to her 10 minutes earlier. I think Celia has cottoned on to fact that it makes her high as a kite as she didn't admit to already having had a dose from Andy!  
As the title suggests we have been overwhelmed by people's empathy and generosity. Not only have our friends been fantastic but friends of friends have also been incredibly supportive. My playgroup mums (and some dads) are fundraising left, right and centre, sending us meals and buying Celia presents. Last night our landlord's brother-in-law arrived on our doorstep - they'd heard about Celia so his wife made about 2 week's supply of baby food for Mabel and we have never even met them - such an incredibly thoughtful thing to do.
We also had the good news that my sister Julie has booked her flight to come out and help next month which is a huge relief so on the whole we have had a positive couple of days.
    
 

Bye Bye Grandparents and a big day today

Up early today for several reasons. Celia has taken on a new side effect - insomnia. When you combine this with her total lack of strength in her arms and legs she can get very demanding about giving her medicine or carrying her to the toilet in the middle of the night. Yesterday morning she actually fell forward off the loo and smashed her face on the tile floor - so carrying and holding is now required for the time being. She has stopped the steroids now so we hope to see her strength returning in the next couple of weeks.
Reason two for being up early - Mabel continues to tease us by doing one night sleep through followed by next night wake up several times. Tonight was the latter.
Reason three - we have a very big day ahead at the hospital where we should hopefully find out how successful the first month of chemo has been and what is in store for the next few months. A full family outing to Monash.
Reason four - Real Madrid v Dortmond is on the TV - well, sure I was up feeding Mabel anyway.

At this moment my parents will be struggling to sleep, not understanding the entertainment system and people watching all those 'foreign' types on an A380 over the Indian Ocean. The goodbyes were not half as tearful as expected but the full time help and support will be missed a lot. We are on our own now...with the help of our many great friends in Australia and the thoughts of hundreds of others (as witnessed by the constant stream of emails and FB messages) . Thanks everyone.

Afternoon update:
Back from hospital and the news is, on the whole, good. All Celia's various blood counts are moving in the right direction, her bone marrow remains clear of cancer, her cold is just a common cold virus. The only concern is that her sodium levels remain low so she will now take more salt tablets and possibly need a saline drip on Friday.

On the walking front, the physio (from Glasgow) managed to get Celia to take a few steps in the hospital on crutches, albeit under duress and with a fair bit of moaning. We have brought the crutches home for some daily practice at walking. Hopefully she can get back on her feet soon.

We get a rest from steroids and chemo until at least Tuesday now - to give her time before the chemo starts again. The full results from our 29 day 'induction' will not be through until next week so we don't yet know how full-on the next phase will be. For now we will just 'enjoy' a few steroid free days and then see what happens next.