Max and the terrible 3s

Looking at this photo the saying 'butter wouldn't melt....' springs to mind but over the past 2 weeks this could not be further from the truth. Max's tantrums have escalated and there have been days where every waking moment was  spent either crying or screaming. When he (and I) do eventually calm down I have talked to him about it and as I suspected it's about me and Celia going to hospital. Of course we might as well be going to the funfair for all he knows as he just sees me, Celia and Mabel going somewhere without him all day. There are days when I've had to take all 3 to the hospital but I find it so stressful that I try and avoid it. Mind you, I don't think it can be any more stressful than dealing with Max's constant outbursts these days so I may need to reconsider. In between the tantrums we did manage to have some nice family time. The weather was amazing last Saturday and our friends Andrea and Dan has us and a few others over for a spot of al fresco lunch which turned into dinner as  the children played outside until it got dark.

On Sunday we drove up to the Dandenong hills as one of the cancer charities was putting on a day with Puffing Billy the steam train which had been disguised as Thomas the tank engine. It was warm but very windy so Celia was not happy, however Max seemed to enjoy himself, especially as there was face painting. When we got back Andy took them out to the garden to plant some tomato and strawberry seeds. He explained how they needed to look after the plants and watch them grow but I don't think they quite understood the growth timeframe as 20 minutes later we looked out the widow to find them parked in front of their respective pots patiently waiting.....

The heat was short lived and it has been quite wintery again this week so there has been lots of DVD watching as I haven't the energy to fight it!

 We had another long day in hospital on Monday and again, it should only have been a morning visit for a blood test and chemo but we were there from 9am til 4pm. They are renovating the cancer centre over the next 3 months so it has moved to a room in A&E where there are no TVs or DVD players so time really dragged. I was moaning about this to Andy until he showed me a BBC news story about the NI Finance minister visiting the Royal Sick Children's hospital in Belfast and how some of the facilities are almost 100 years old. He was "shocked and ashamed" by the conditions he saw and although funding has been agreed for a new hospital it won't be completed until 2021 so I quickly reminded myself how very lucky we are having Celia treated here in Melbourne.    

   

Hair - coming and going!

We saw the first signs that Celia's hair is growing back this week - she is very excited and I can't stop stroking her fluffy head! Although it is hardly visible she didn't wear anything on her head today at kinder so I think it is a big psychological step forward.
Mabel on the other hand lost some hair as she had her first haircut on Wednesday. One of the UK playgroup mums was a hairdresser back home and now she does the kids hair during playgroup so that saved me a bit of time, effort and probably money as Max needed a haircut too.
  






We had chemo last Friday and I also set up a meeting with the resident psychologist as the phobias just keep coming. The latest one is Vampires. We were reading an ABC book and V for Vampire came up. Celia asked what a vampire did and I stupidly told her. She then became hysterical and kept shouting 'why did you tell me that! You know I will have nightmares now!" so we stayed up reading nice stories for another hour and eventually she went to bed but wouldn't let go of my hand and she did indeed wake up crying in the middle of the night. I think the phobias started after she had the MRI (which most 4 year olds get a general anaesthetic for but they thought Celia wouldn't need one) so I am hoping the psychologist can help.
We had an induction session at Celia's new school yesterday and she loved it so I'm feeling a lot happier about her starting in February as up until now she has been saying she didn't want to go to Blackrock primary as her kinder friends were going to other schools.

It is Mabel's first Birthday today which means this time last year I was in intensive care and 'baby kerr' was in an incubator. I have been looking back at what a truly hectic year it has been for us (well 15 months to be more precise) but light is most definitely at the end of the tunnel now.

Straight into the next phase

All Celia's blood counts were up last week so we started Interim Maintenance last Wednesday. I was very surprised that there wasn't a delay as Celia's little pal Dominic was delayed by about 8 weeks due to his neutrophil counts being so low. 
We were first on the lumbar puncture list so were at hospital for 8am. Unfortunately Celia had another anaesthetic tantrum but they didn't put her back to sleep this time (said there was no guarantee she would wake up differently) so I had to endure half an hour of howling, hitting and kicking until it wore off. Getting the chemo was another drama even though her port had been accessed under the general anaesthetic. She was just exhausted as this didn't happen until 3pm so we had been waiting around for 6 hours.   
Looking on the positive side, we have no more chemo for 10 days and her blood results yesterday were excellent.


Celia in Botanic Gardens with Uncle John

We also had a lovely two days when Andy's Aunt Gladys and Uncle John came to stay with us. They are holidaying in Australia for 3 weeks with four other couples from home and we spent a beautiful sunny Monday in the Botanic Gardens followed by a lovely meal in Brighton with the whole minibus 'crew' and Andy managed to take two days holiday (which were well earned as he has been working 60 hour weeks recently) We so need to get a few more holidays booked  - or cancelled holidays rebooked I should say.....  

Celia is in great form these days and asked to go to kinder today so we took in her special cancer beads for 'show and tell'. Every child gets a beaded journey. This gets added to every time they visit hospital with different coloured beads for every procedure. Apparently Celia was so keen to tell her friends all about it she lifted her dress up round her head to show them all her port - that must have been quite a unique show and tell!  





The last week of Delayed Intensification

 After a very quiet weekend we were back in hospital on Monday as Celia needed a blood transfusion. All was going smoothly until Celia got up from her chair and forgot she was attached to the drip (she was too engrossed in her craft activities with play therapist Liz as you can see) and the tube got disconnected from the bag of blood. I heard the screams and ran in to find Celia very distressed as there was a lot of blood on the floor. I initially freaked out as it took me a few seconds to register where the blood had come from! We calmed her down but it meant starting over with a fresh bag of blood as the original one had to be thrown out due to risk of contamination. They assured me it wouldn't delay things too much as her blood group was in stock but it took nearly 3 hours for another bag to be brought up from the blood bank so we ended up being at the cancer centre for over 8 hours. Max went to a friends but I had initially told her he would only be there for the morning and it was after 6pm when I collected him. Mary was of course fine with the situation but I felt very guilty. I also hadn't packed any dinner for Mabel so I stole a Weetabix from someone which was of course something else for me to feel guilty about. Mind you, on the positive side, she was so hungry that she actually said her first words as she started shouting "mama, mama...." repeatedly until I fed her!    
The blood transfusion has been very successful as her blood tests on Wednesday showed that all her counts had risen which is very positive and means we may be able to start the next phase this week (Interim maintenance). Around 50% of children experience a delay but tomorrow's blood tests will confirm if  we can start this protocol on Wednesday.

Celia has been so content staying at home and playing with Max and thankfully so has Max. We can go out to the park but I am wary of taking her places where there are too many people as she is still so neutropenic. They have developed so many new games over the past few weeks it really is a joy to sit and watch them play together. Making pixie dust and berry cakes in the garden is the favourite right now.

Her creative side still amazes me as she most certainly doesn't get it from me. I found her making these jewellery people from her bracelets and necklaces the other day and it was a jewellery butterfly the day before which was fantastic considering she wasn't copying from a picture.

I finished the week off by having a girl's night out. It was a friends birthday and I even managed to end the night on the dance floor. Must be a good few years since that last happened!   

A close one

 As the title suggests we very nearly had a hospital admission on Friday but luck was on our side and we got to go home. I say luck as I think we were only released because it was a Friday and they like to clear the wards out at the weekend. Standard protocol states that a temperature of 38 or above means admission and 24 hours monitoring and Celia's was 38.1 when she woke up. It did drop steadily during the 4 hours we spent in the cancer centre and I was confident she didn't have a fever so I was very relieved plus it would have scuppered our attempts to break the record of having no hospital admissions during the whole 2 to 3 years of treatment (apart from the 9 days at the start of course) and touch wood, we are still on track. We haven't actually met anyone else in the cancer centre who has got this far without any additional overnight hospital stays so she really is doing amazingly well.

I was also pleased to find out that she didn't need another transfusion as we'd been warned to expect several over this 2 week period and she was very pale and teary on Thursday especially doing her blood tests, but considering they were done 3 times due to the first 2 not working, that is hardly surprising - her little hand looks like a Dora finger puppet show again!
 She is still extremely neutropenic of course (low white cells) but  platelets and red blood cells are doing what they should.
Mabel also had a high temperature this week (38.7 on Thursday) and was sick a few times but whatever she had seems to have passed and not been picked up by anyone else.

Celia recovered well and insisted we take our monthly shopping trip down to Sandringham farmers market on Saturday so we spent a lovely morning bumping into friends, playing and eating massive scones with cream and jam in the glorious spring sunshine.
We took it easy today and I only left the house to go for a run and I can honestly say I have never enjoyed running as much - perhaps the views may explain why running is such a pleasure these days! ........

More Transfusions

I'm glad to report we ended last week relatively drama free (well apart from Celia cutting her finger on Max's toenail which sounds minor but because her platelets are so low, it was still bleeding after 4 plasters). The nurse came out to give Celia the thigh injection on Thursday, Friday and Saturday but this time Celia had no problems and even laughed while she did it.
She has been in good spirits but not well enough to go to kinder and she still throws a tantrum if I try to leave the house without her but she is an angel to deal with compared to Max. Max's tantrums are becoming daily and he is at that stage where everything I say is met with "NO, don't want to!" or worse!

We ended the week by going round to our friends Niamh and John's for a delicious Sunday roast and the kids had a ball playing in the glorious Spring sunshine although Celia did get very teary towards the end of the day. Little blood spots (petechial rash) had appeared on her ear that morning, which is sign of extremely low platelets, so I was amazed she held up as long as she did.

We were warned to expect various transfusions over the next 2 weeks so I didn't even bother going to the local hospital today for blood tests. Instead the whole family headed up to the cancer centre and she did indeed need a platelet transfusion (she had her lowest count since second week after diagnosis) but as I said above, this is to be expected at this stage in the protocol.

 

A week of falls

Well as you can see Celia had a nasty incident with a pavement on Sunday. We went to Hastings on the Mornington peninsula for a walk through the wetlands and after lunch an unusually exuberant Celia ran down the main street and tripped (her feet are still a bit clumsy due to the chemo). Her knees, hands and face were cut but luckily it looked worst than it was as blood filled her mouth and nostrils. Because her platelets and neutrophils are so low right now I wasn't sure if the bleeding would stop or if she'd pick up an infection but she is healing well.
Celia refused to go to playgroup on Monday because she didn't want anyone to see her face but by Tuesday she was happy enough to have a playdate with Bettie.
 The playdate, however, very nearly didn't happen because I had to dash to the emergency department as Mabel fell down the whole flight of stairs. I was convinced serious damage had been done as the noise of her head hitting the wooden floor was deafening and she only cried for a few seconds then went very still and made no sounds at all. She immediately fell asleep in the car and I yelled at Celia to keep her awake. The A&E doctors saw us straight away and by this time she had started to move and make some noises. They sent us home (via the Phlebotomy department as had to get Celia's bloods done that day anyway!) and asked me to observe her for signs of concussion but she was fine, thank God. Then just to top off my day the hospital rang to say Celia's blood counts were really low and she'd need a blood transfusion the next morning - did I also mention that I had sinusitis all week? Roll on the weekend!
So yesterday was another full day in the cancer centre as the transfusion took 7 hours by the time they had done more finger pricks, ordered the blood, set up the drip and administered both chemo drugs.
 I am pleased to report, however, that at long last they are giving Celia gas before her injections and it worked a treat so they've promised she'll get it from now on which is a huge relief for both of us.

The only other major thing happening last weekend was a general election but considering how diabolical both PM contenders were, plus the fact that we can't vote, I wasn't really that interested and judging by the front page of the main broadsheet newspaper the day after the election, nor were Australians! (it doesn't matter whether there's an election, nuclear war or mass genocide, every week the front page is dominated by Australian rules football. I sooo miss the Sunday Times!)