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.

Countdown is on

It has been a long time since we wrote the blog. I will do a catch up one soon, sharing all our memories of a lovely Christmas, a couple of weekend breaks and a period of almost total normality on the Celia health front. The big news however as of today, Friday 30th January is that we have a treatment end date to look forward to. It was confirmed today that Celia's chemo will officially end in June 2015 so we are into the last 5 months of treatment.
The countdown has started!
Fingers crossed that everything goes to planned and this schedule stays intact. It should align very nicely with our citizenship timeline.
 Life is on the up.
Have a happy weekend everyone...and good luck Andy Murray in the Australian Open final.

Mabel's first day at creche and Celia's first day in grade 1

High Temperature - after a fun weekend with Dad

It's been a while. That's probably a good thing because in Maintenance phase then no change is a good sign. In the last couple of months Celia has been doing fine. Her chemo dose was reduced to half what it was previously and as a result her body is coping well. A couple of weeks ago it went back to to 3/4 dose and, whilst she has shown occasional signs of tiredness, there have been no other issues.

Cue...Monday 4am very high temp...dad has to cancel flights to Sydney for a planned business trip and instead spend the day in Monash hospital.

Perhaps we overdid it at the weekend having far too much fun whilst Lydia took herself of walking at Wilson's prom with a dozen other kinder mums. We had football, swimming, Mabel birthday picnic, play centre, cake, fish and chips and even managed to keep the house looking reasonably respectable. All that must have tired Celia out a bit because just as Lydia arrived home on Sunday night, Celia started to feel yucky and her temperature headed steadily northwards. We decided to hold off until the morning but at 38.8 degrees at 4am (during one of the many Mabel night time interruptions) it was time for an early rise and a trip to see the doctors.
By 2pm, with some antibiotics and a few tests she was allowed home. We're back in tomorrow for more tests but hopefully that will be it for the latest little episode.
Celia's main concern in all this...tears because she will miss her piano lesson on Tuesday.
Still, at least she got a hug from Ariel today.

Celia with princess Ariel

 

Plenty of Challenges

It has not been the easiest of weeks.

Since leaving hospital last Friday Celia has had a few teary mornings at school - mainly because all the other children are doing intensive swimming lessons this week and she is not allowed to for fear of infection.

Her blood results on Monday were still low so she is not yet back on chemo.

She's been a bit tired and down generally and we thought signing her up for gymnastics would boost her confidence and give her something to look forward to. She's been talking about it for weeks and really looking forward to joining her friend Sarah in a Friday class after school. She lasted 15 minutes - all of which was spent standing in the middle of the floor, not moving and crying for mummy. Not a great success really. Refund please?

It has subsequently emerged that she has conjunctivitis. Cue lots more tears and hysterics trying to get drops in her eyes. She looks terrible, but should be fine in a day or two...just in time for a week of steroids and lumber puncture if her body can take it

All of a sudden Mabel's nocturnal wanderings (she spends 2 to three hours every night between 1am and 4 being wide awake and refusing to stay in her bed) seem the least of our worries.

Thank goodness for Max! Our terrible twos and stroppy threes monster has become a (comparatively) model four year old. Well done for coping with the craziness and emotion all around you son! And I don't just mean from your siblings. 

 Although last Friday was a happy day because Celia got out of hospital, there was also a little bit of sadness too as it was Dr Eva's last day before she left for her new life with her new husband in Zurich. Eva has been Celia's consultant since the week of diagnosis and she is so amazing with her. I am sure there was a tear in her eye when I told her about Celia being teased at school and the advice she gave Celia on how to deal with it was so wise and heart felt that she has actually been ten times more helpful than the resident child psychologist! So next week we get to meet our new consultant - Good luck to them as they will have very big shoes to fill. Thanks for everything Eva.