Celia not ready for next step

Although Celia is in much better spirits, her blood tests on Tuesday showed that she is more neutropenic now than ever before so the lumber puncture and next round of chemo didn't happen as planned yesterday which is actually a relief as I hadn't realised it will be another 8am to 6pm full day procedure. I will be mentally prepared for it next week so fingers crossed it goes ahead as I don't want her to fall too far behind in her treatment.

At home Celia has been her creative self again. She is never without a pen in her hand and as you can see anything can act as her canvas!
It has taken a while but she now draws herself as bald (she is second from the left in below picture). For weeks after she lost her hair she would draw herself with long hair down to the ground and then she would laugh and say "silly me - I forgot I have no hair!"

Mabel started crawling and cut her first 2 teeth on Saturday. It is hard to believe that this time last year I was admitted to hospital for almost 3 months thanks to complications with my pregnancy - now she is causing trouble of a whole different kind which reminds me, I must get that stair gate sorted!

 

It's all about Celia

Celia and Leukaemia has not surprisingly become the main focus of this blog and that is pretty much a reflection of our daily lives right now. Max has dealt with it amazingly well but I have learnt that just because he isn't complaining or talking about it, does not mean he's not affected.  For example, I found him striking up a conversation with a stranger in the park last week and when I listened in, he was telling them that I'd cancelled his birthday party because Celia was ill (his birthday was almost 2 months ago). On his actual birthday I remember going into his room and saying "Guess what day it is today?!...." and his reply was "lumber puncture day??".
Celia is with me constantly and he gets left with babysitters when we go to hospital and it has naturally led to him playing up more. On the first day that Andy took Celia to the cancer unit Max was an angel for me. He was just so happy to have me to himself (well, share me with Mabel at least).
Last week he kept saying he was ill and one morning he shouted at me to pull over cause he needed to be sick so I did and he pretended to vomit in a sick bag but when I said that we couldn't go to crèche if he was sick he miraculously felt better.
It is very common for siblings to fake sickness as they see their sister getting all the attention and want in on the act. I have talked to a few of the mums with older children and they have much worse than me to deal with - 7 year olds who say they hate their brother and teenagers who have gone completely off the rails since their sibling was diagnosed.
It is hard to know what to do to prevent these reactions because cancer treatment if VERY time consuming and as a parent you must be with the sick child at all times.

Celia is not bouncing back after coming off the steroids this time around. She is still quite weak, lethargic and very teary. She is very bloated and the pains in her thigh are keeping her awake at night.  She is also neutropenic so probably just as well we are not leaving the house as the dreaded gastro bug seems to be doing the rounds again.
Hopefully her blood counts will recover next week as the following round of chemo and next lumber puncture op will be delayed by a week otherwise.
      
 

Tough week is nearly over

Celia has been finding her second week back on the steroids very tough. We've seen a gradual decline in her energy and mood over the last six days. We've had a couple of days of not moving from the sofa, wanting to be carried everywhere, resorting to crawling in order to get up the stairs and complaining of feeling "yucky." On Sunday night she didn't sleep very well because of pains in her legs but thankfully the pain has gone away, even if the weakness hasn't.

To add to the fun, Mabel continues to suffer teething pain and wakes up in the middle of the night a bit too often for comfort, whilst still not actually producing any teeth. They are getting close but still, at 10 months old, she remains toothless.

The pressure of the whole situation continues to effect all of us in our everyday lives and for the first time in a long time the serious topic of making plans to go home was back on the table. On Friday night after a tough week Lydia and I were both ready to leave as soon as we can. Obviously we need to see when it makes sense from Celia's health perspective but we both agree that we need to begin the process of planning our Australian departure - albeit the execution of the plan may take a couple of years yet. It will be interesting to talk to cousin Louise Sweeney when she arrives back in Australia tomorrow after a few years in Northern Ireland. We'll see if that confirms or confuses the plans.

On the positive front tomorrow sees the end of the steroids, we're going to see Pink on Thursday night and Lydia has a high tea date with 30 other girls on Sunday (?!)
 

A trip to the snow

I was amazed at how quickly Celia perked up once the steroids stopped last Wednesday - one day I was having to carry her and the next she was jumping around asking to go to kinder so in anticipation of it being the last weekend this winter where she'd be in good spirits we headed up to mount Baw Baw on Sunday. It's just under 3 hours drive away so a bit of a trek for not much snow but as Max has never seen snow and Celia can't remember seeing it, we thought it was worth it. They enjoyed the tobogganing but got tired after about 2 hours. Mabel didn't crack a smile all day but neither did she cry so that is a positive response in my books!  We were back in hospital for chemo yesterday and Celia is really struggling with having her port accessed. She is OK with the drugs being administered but getting the needle in is a major ordeal these days. When nothing the play therapist tried would calm her down, it was just a case of 3 of us holding her down and Celia screaming the place down which isn't going to bode well for the next time we go for chemo.  

As of last night she is back on the steroids and less than 24 hours later they have kicked in. I thought I should take a photo so that we can capture the ups and downs of her journey and pictorially chart her progress but this caused a tantrum and she covered her head and face and screamed at me to take the camera away so I think I underestimated how much the change in appearance has affected her. When I see the teenage girls in the cancer ward my heart really does go out to them and their parents - God knows those years are hard enough as it is. I am hoping that her hair will start to grow back in about 3 months when the treatment becomes less intense so it's not that far away in the grand scheme of things.

Increasing the Intensity

Celia is now a week in to the "Delayed Intensification" phase of her treatment. As the name suggests this 8 week period sees an increase in the frequency and volume of chemotherapy. As expected the combined effects of the steroids and the chemo are starting to take their toll on her body again. The last few days have see a return of the lethargy, the emotional extremes (aggression, clinginess) and a little shakiness in the legs. However, it is nowhere near as bad as first time round and at least we know she comes out of it again.
This time she has steroids one week on, one week off, so from tomorrow we have a steroid-free week. Hopefully she'll perk up a little by the weekend.
Yesterday, I had a day off to take my turn on hospital duty as Celia needed to go in all day from 9am to 6pm for Asparaginase (a particularly strong chemo that she only gets a few times during her entire treatment). The trauma of leaving mum to allow dad to take her to hospital was worse that the day of cancer treatment itself. The tears started the minute she woke up, increased in intensity over breakfast and turned into hysteria as we drove in the car to hospital. Thankfully she had calmed down by the time we arrived and we actually had a reasonably calm day with lots of drawing and playing with lego between treatments. After a long day she needed carried to the carpark but she managed to stay awake long enough to enjoy some of mum's bolognaise when we got home. Thankfully, her appetite has remained fairly good throughout her treatment to date.
Tomorrow I'm having another dad hospital day - hopefully just for a couple of hours this time - as she goes in for her regular vincristine chemo. Fingers crossed for a few less tears as we leave mum at home again.