Max gets in on the act

starting a new knee sock / plaid shorts trend

Wellies are the ideal footwear in 36 degree heat of course

I am not sure whether Max is exhibiting attention seeking behaviour because the past few weeks have all been about Celia or if he just has terrible dress sense but something isn't quite right!







I am pleased to say that Celia had a stable temperature all weekend after a few close shaves on Friday when her temperature got dangerously high again.

Celia and Jacob chilling in the pool

In fact, it was Max who wasn't well on Saturday and his temperature reached as high as 39.2 but the thought of missing out on a pool date round at Jacob's house got him out of his sick bed so Andy and the kids had a lovely afternoon round at Kirstie and Dave's while I (and Kirstie!) went on a girls day out which was just what the doctor ordered after the week we've had.

Egg and cress sandwich anyone?

 Me and a few school mums took ourselves off to ladies day at the Werribee Polo and it was a most civilised and enjoyable day out. Can't say much Polo was observed but from a people watching perspective it was a fabulous afternoon!

I was going to say it is nice to get back to normal but since when did pool play dates and polo become normal!?

Home Time

We've now had 36 hours without a high temperature and also a full night without any antibiotics to help out. It would appear that everything is functioning normally again and Celia seems bright and happy. Time to go home.

Feeling Brighter

Celia has been looking and feeling much brighter over the last couple of days.
We've had daughter and dad movie time watching Frozen (twice!), played some games, had a wander about the hospital (drip in tow) to the art room, the cafe and playroom - anything to distract me from working.
The various doctors and specialists still can't find anything at all wrong with her. Nothing. But yet her temperature keeps 'spiking' above 38 degrees at some point every night.
I had a bit of a chat with various doctors yesterday to get the full picture and my conclusion was that they are trying hard to find something but are running out of ideas. The consensus is that they don't seem overly worried so therefore nor should we.
They are taking her off antibiotics, panadol and drip today to see if her body can look after itself for a couple of days...but still no sign of getting home unless the high temperatures stop. We're heading towards week 2 in hospital it would appear.
 

Grasping at straws

Tuesday 17th Feb

So far all tests have come back negative so the doctors then sent in the infectious diseases team. They drew a blank too so now Celia is having an ultra sound on her abdomin and an x-Ray on her chest. Not really sure what they are meant to show (or rule out) and I get the impression the doctors don't really know either hence the 'grasping at straws' title. 

She did manage to get out of bed today, however, and Andy even persuaded her to get dressed so progress is being made. They are trying various combinations of antibiotics and it seems to be taking effect as her temperature dropped below 37 today for the first time in about a week. If it remains stable for 48 hours they will let her go home. 

Having talked to other cancer mums I know that this past week is par for the course unfortunately, we have just been very lucky up until now not to have encountered any unexplained fevers. Andy, however, was convinced there was something more sinister going on and all he could think about was relapse so he did the worst thing possible last night - Google! But after a sleepless night the doctors reassured him this morning that was not the case and her blood counts remain healthy. 

We are now crossing everything and praying that her temperature stabilises and we can get her home before the end of this week.  

Apparently it's Valentine Day

Saturday 14th Feb

Andy and I may have spent most of Valentine's Day apart but we still managed to swap cards at shift changeover (both cards bought at the hospital shop so lucky we didn't pick the same one). I even managed to pen a quick love poem of sorts - "Roses are red, Violets are blue, If I do tonight and tomorrow, can you do the following two?" - who said romance is dead......
Unfortunately Saturday morning saw no change to Celia's condition so I took Max and Mabel up to the hospital in the afternoon. We ventured down to the hospital's cafe and sat at an outside table as it was a beautiful day plus I thought fresh air would do Celia good. After 5 minutes, however, she was struggling and wanted to go back to bed.  Usually when she is sick the only things that can bring a smile to her face are Max and Mabel but not today so Andy left with the kids and I settled in for a long evening. The hospital is pretty deserted at weekends as they try to discharge as many patients as possible on a Friday. All the playrooms are shut, the Ronald McDonald room has reduced hours and there are no play therapists so the atmosphere on the children's ward is very flat which is most frustrating if your child happens to be inconveniently sick outside Monday to Friday working hours!?

I saw a few parents today who were obviously at the start of their cancer journey; the shell-shocked expression and red hospital bag were the main giveaway signs.

The Redkite charity give all parents one of these red beach bags when your child is diagnosed with cancer so when you pass another parent with 'the bag', you swap empathetic smiles because even if you don't know each other, you both know a lot of the the same people!

Her temperature was still 38.8 at midnight so it is unlikely we will get out tomorrow as it needs to be stable for 24 hours.  

Another holiday cancelled

Friday 13th Feb

Celia's temperature remains high and all she wants to do is sleep and stare mindlessly at the TV. The white cells in her urine are decreasing which is good sign.
 As per usual I got no sleep last night as Celia's bed is right beside the entrance to the ward so every coming and going was accompanied by a door bang loud enough to shake the whole room and for some reason the alarm on her drip kept going off every 5 minutes - that bleep will haunt me til the end of my days!

Celia has to stay in hospital tonight as her temperature isn't stabilising and she isn't eating or drinking so our long weekend to Phillip Island has most definitely been canceled. That is the 3rd holiday we have had to cancel and it is so upsetting to see the disappointment on the kids faces.

Looking on the bright side, Celia's blood counts remain high and I am getting a chance to catch up on my book group reading.

Ronald McDonald Family Room

 Once again I am eternally grateful to the Ronald McDonald house charity for providing the most amazing parent room where you can grab breakfast ( they even have a pancake machine!) have a shower, do laundry or relax in a chillout room.

 Andy and the kids came up at about 4pm and we planned to swap over for the night shift. There were a few tears and cries for mummy to stay but she got over it quickly enough.

One good thing about all this is that it reminds you what is important in life so when I got home I had a bath with Max and Mabel. I think I can count on one hand the number of times I've made the time and effort to have a bath with the kids. They were so delighted to splash around with me and for once not have me screaming about flooding the bathroom - mental note to self: chill out a bit more!

 

Bad memories flooding back

Thursday 12th Feb.

The distant memories of what we went through in 2013 have come flooding back this week as our day to day life is turned upside down once again.
You must drop everything if Celia's temperature goes over 37.8 degrees and head straight to Monash Cancer Centre so we've been there Friday, Monday, Tuesday and all of today. Her temperature is still spiking at 39.7 even after 4 doses of intravenous antibiotics so she's being admitted overnight.
Until this week I'd forgotten what a logistical nightmare an unscheduled hospital visit poses.
Today, for example, I had to get 2 preschool children to kinder and Crèche, Celia to hospital, then go back and collect Mabel a couple of hours later, pick up overnight bag, get back to hospital where I had left Celia on her own for over an hour and a half which you aren't supposed to do, try and arrange a pick up for Max which proved too hard so Andy cancelled an important client meeting. As we only have one car Andy had to train it to the hospital, collect Mabel then pick up Max.
Back in April and May 2013 our life was like that almost every day and you never knew how long you were going to be in hospital so a lot of the time it just seemed easier to take all 3 children with me which was a nightmare of a different sort!
My memory of how tortuous those first few months were had faded until Celia was admitted to the children's ward today and now it feels like it was only yesterday (obviously I am not just referring to the logistical problems; fearing your child might not make it and witnessing their constant pain also contributed to the stress somewhat!). I suppose it is a bit like child birth, the memory of the pain fades with time, but I honestly don't know how we coped back then. I use the word 'coped' very loosely as in hind sight I actually didn't cope at all.
Today after just 4 days of this 'inconvenience' I was back to my 'bear with a sore head' act (screaming at the children, screaming at any driver in front of me who dared drive under the maximum speed limit, screaming at a radio DJ for being so idiotic - you get the picture). My anxiety levels were through the roof and that's what I was like perpetually between April and December 2013.
Thankfully this afternoon I got a grip of myself, reprioritised and with a bit of slow breathing I brought my anxiety levels down but it is something I've mastered far too late. Because I now recognise the signs I'd like to help other parents who are at the start of this journey and encourage them to seek help if they are experiencing symptoms of anxiety. I also want to offer them hope as it can seem very bleak in those first few months so I've volunteered to be a 'blood buddy' for a new program the Leukaemia Foundation are setting up. Basically I would be paired up with parents of newly diagnosed children and act as their 'buddy'.
I would have found this really helpful in the early months as the fear of the unknown was a huge contributor to the stress. I've had my interview and completed the training modules so I'm just waiting to be put in touch with my first participant.
Talking about bad memories being dredged up, Celia's dinner just arrived and as I lifted the lid of her plate, that hospital food smell hit my nostrils and I almost wretched.

It evoked such a vivid memory of what I had to endure for almost 3 months back in 2012 when I was incarcerated here with problem bump/child number 3. I'll never forget the night I ordered chicken curry and they had run out of rice so I got curry with a lump of wet mashed potato just like the one in this photo?!?  Monash you have been really great to us over the years but I am so hoping I never have to spend another night here!

Our first music video!

Goodness, we don't post for months and now here I am putting up 2 in one day!
I just received a link to the music video Celia and I participated in a few months ago at the cancer centre.
The parents of a little boy called Bailey who unfortunately lost his battle with cancer, set up a charity in his memory and this video was filmed as part of a fundraiser called 'Bailey's Day' that raises money for Monash Childrens hospital. His amazing parents are in this video as well as most of the wonderful staff that have helped us on this journey.

https://drive.google.com/file/d/0BxPQ_nlEp0jzVEpaRHR2ajljZzg/view?usp=sharing

A reminder that we haven't reached the finish line just yet

After hearing that the end of Celia's treatment was within touching distance (June) and being told on Friday that her blood counts were so good we could drop the next fortnightly blood test, Andy and I were obviously feeling very elated.  And even though Celia was on steroids at the weekend we let her start swim lessons on Saturday (in an outdoor pool as indoor pools are still out off limits), then we had a mother & daughter day out on Sunday to visit the Jean Paul Gaultier exhibition.  As you can see from her sketches it provided our budding artist/fashion designer with some fantastic inspiration!

As the title suggests we came crashing back to reality on Monday as Celia spiked a temperature of 39 degrees and we had to get her hooked up to an antibiotic drip for a few hours. As her blood counts remained high they let us go home which surprised me, but we had to return to hospital for some more intravenous antibiotics yesterday. She has still got a high temperature today and remains very lethargic but hopefully the test results of the cultures they took will be back this afternoon and we can treat whatever infection she has accordingly.
We have our annual family camp with the wonderful Camp Quality cancer charity this weekend so fingers crossed Celia makes a very speedy recovery as the whole family is looking forward to it but this does serve as a timely reminder that she is not out of the woods just yet.