Christmas with the cousins

 I will let the photos do the talking but suffice to say the children are having a ball with their cousins so it has been a wonderful Christmas so far. The only low point was the wet weather on our holiday to Wye River last weekend and I'm afraid to say that by Monday morning we admitted defeat and came home a day early but looking on the bright side, I think we needed the extra time to get prepped for Christmas day which was a sunny 31 degrees.

Max and Sam dinosaur hunting near Wye River

Uncle Gary the human packhorse - Max not happy about being on last!

Waiting for Santa on Christmas Eve

Andy and Gary prepare the ham

Christmas Morning carnage

Christmas day Aussie Style

Celia and Talia

The leftovers tasting better than the Christmas dinner

Celia's bloods have been holding up so she had her monthly visit to hospital for intravenous chemo on Friday. This also means she is on steroids for the next 5 days which is never easy especially when Andy and I plan to have one precious night away together tomorrow. I broke the news to Celia tonight and as expected her reaction was pretty extreme. There will be lots of tears tomorrow before we leave but I need to remember it is the steroids that cause these mood swings and we will get sweet, good natured Celia back in a few days time. Happy New Year!

Sticks and stones.....

Unfortunately Celia has received more  insensitive comments at kinder from a different girl this week ("we're all going to the cinema for X's birthday but you can't come as girls with no hair aren't allowed in", "don't touch my doll as she doesn't like girls with no hair" etc). She even had a boy at school orientation day come up to her and say "I don't like you" when he'd never even spoken to her before. To make matters worse the oral chemo has resulted in a horrible rash on her face so I can only imagine the teasing will get worse. My fear that this would scare Celia away from kinder/school has however been unfounded and she is actually in great spirits. When I asked her what her reaction was to all these comments she just shrugged and said "I told them to stop being silly and walked away" - she is so wise beyond her years and I don't doubt it is because of what she has endured these past 9 months.

 The weekend we just spent on cancer camp in Anglesea probably contributed to this boost of confidence and good humour. I will let the pictures do the talking but they do not do justice to the wonderful Camp Quality volunteers that gave up their free time (they all have full time day jobs) to make the most amazing weekend happen for children with cancer and their families.

 

 

 

 

 

 

 

 

I am not sure when the next update will be as Andy's sister and family arrive with us next week and then we are all off on holiday for 4 days followed by the main event so busy busy but wouldn't have it any other way. This will most definitely be one to enjoy and remember - Merry Christmas!  

First big milestone reached - Maintenance!

We breathed a big sigh of relief on Tuesday as Celia's blood results were good enough to proceed with the lumbar puncture and chemo on Wednesday which marked the start of the maintenance phase.
We had the usual problems coming round from the general anaesthetic so they are going to try a different drug next time as something is clearly not agreeing with Celia. She was is bad form for the rest of the day as she was so exhausted after the anaesthetic tantrum plus her neutrophils were quite low so they delayed the start of the oral chemo.
 I didn't actually realise how many new drugs she was going to be taking in this phase - I was just focusing on the fact that we only need to go to Monash once a month for intravenous chemo. In addition to her mouthwashes and antibiotics, she has to take steroids for 5 days every month and two forms of oral chemo, one daily and one weekly (if her neutrophils are high enough for her to withstand this so she still needs to have regular blood tests at the local hospital).
Within 24 hours of taking the first steroid dose Celia was a lethargic, teary mess so now the reality of maintenance is sinking in and I'm thinking that sigh of relief was perhaps a bit premature as we have 2 more years of this.

She was in particularly bad form on Friday and refused to go to kinder yet again. This has been going on for a over a week so I knew it wasn't just the steroids or low neutrophils. After a lot of coaxing she eventually opened up and admitted it was because she's scared of one of the other girls at kinder who has been teasing her about her hair. I feel a bit torn as it would be easy to say 'there are only 3 weeks left so you don't need to go back' but that is not really dealing with the issue and what if someone at school teases her next term, she can't just choose not to go to school so I will try and take her again next week but I imagine there will be lots tears.

Despite all the moodiness we have been getting into the Christmas spirit and to celebrate Celia starting maintenance we put the tree up and made some decorations. We also attended the Challenge Christmas party yesterday which was a fantastic funfair at Sanddown Race Course. Amy's son Dominic was there but he was Celia's only 'cancer pal' as Charlie and Seth were admitted to hospital last week which serves as another reminder that we are nowhere near home and dry as they have both been in maintenance for months.

  

Fundraising past the $20,000 mark!

On my last post I talked about Anita raising over $1,000 for our chosen charity but after I published that post I realised how slack I've been about updating you on the amazing efforts of other friends and colleagues.
Our friend Alistair back in Scotland for example ran the Glasgow half marathon last month with his 3 year old son (I'm sure the toddler dash wasn't 13 miles long but still a good effort on Euan's part!) and together they raised over  $1,300, so check out our fundraising page for more info as we have now past the $20,000 mark which is unbelievable.(The page says $16,000 raised but we also had nearly $5,000 donated in cheques which went direct to the charity).   Which reminds me - I need to send a thank you note to the CEO of the Children's Cancer Centre Foundation because she posted me a voucher for $300 worth of group training sessions. She won it in the raffle at the charity luncheon I was at 2 weeks ago and as she doesn't live locally and knows that I do, she sent it to me which was so thoughtful of her. Now all I need to do is mentally prepare myself for a few 6 a.m. boot camps on the beach!

We've had a house guest over the past week in the form of Ed the kindergarten elephant. We have to make a photo diary of everything we do with Ed during the week so Ed got to have a finger prick at hospital, a trip to the toy library and an outing to the Melbourne museum.


The most important event however, was on Thursday when Celia had her first school orientation day. I was a bit apprehensive as this was the first time I'd dropped her off  but as you can see she was fine and I didn't get a second glance leaving the classroom. She talked nonstop on the way home about the new friends that she'd met so no worries about her starting next year.

I also used the time that Celia was at school to do something nice with Max for a change so we went to this new café that is also a dog grooming parlour - sounds weird but it was great as the back wall is glass so the kids can watch the dogs being clipped and groomed as they drink their baby chino!

   

Maintenance (Remission) within touching distance

Celia has had her last intensive chemo session before we enter the final phase which is called maintenance (remission). We are not out of the woods however as this phase lasts 2 years and involves monthly chemo and lumbar punctures every 3rd month but it will be so much more manageable. Her hair is really noticeable now and she hardly ever wears headscarves any more so her confidence is growing daily. Unfortunately so is her stroppiness and now she is overtaking Max in the tantrum stakes.

I picked up the dreaded Gastro bug last week and then I passed it to Max so he has been sick for the past 3 days and Celia is not happy about someone else getting attention and sympathy!

We did manage to have a family outing to Santa's Magic Kingdom however as Challenge Cancer Charity gave us free tickets and the kids loved it as it was their first time at the circus. The giant penguin seemed to be their favourite bit though!





  I was on the receiving end of Challenge's generosity on Saturday as well as they held a cancer mums Christmas lunch at one of most beautiful vineyards I have been to here (Yering Station in the Yarra Valley).

Amy and I at Beautiful Yering Station

I got to talk to a lot of mums that I hadn't meet before as there were only 3 of us from Monash cancer centre, all the rest were from the Royal children's hospital, and once again I realised just how lucky we were and how unbelievably well Celia is progressing with her treatment. Some day I will tell some of the other children's stories but right now it would feel like tempting fate so I will hold off.



The Monash Mums - Amy, Me and Niki

The weather, food, wine and company were all wonderful so a heartfelt thank you to Challenge and to Ann who owns Yering Station as she makes this lunch possible every year as she was a cancer mum herself (and thanks for the beautiful table flower arrangement which I also won!)

Finally I wanted to tell you about a lovely lady that we bumped into for the first time a few weeks back at the local farmers market. Anita is pregnant with her third and we got chatting as she will soon have 3 kids with a similar age gap to mine. When she found out that Celia had leukaemia she insisted that she wanted to fundraise for our chosen charity and true to her word that is exactly what she has done - she ran 14kms in the City to Sea run on Sunday and raised $1000 for the Childrens Cancer Centre Foundation. I have yet to meet with Anita and say thank you in person even though she lives just a few streets away but Anita, if you are reading this I promise I will arrange something soon!


Anita at the finishline - well done you and bump!



A busy few weeks

The fact that the blog has not been updated in over 2 weeks indicates that we have had a busy couple of weeks. I am glad to say that most of this was 'good busyness' i.e. social events and not just hospital and doctor visits although there were a few of those too.

Two weekends ago our friend Roger came down from Sydney to see us and as you can see uncle Roger is always a big hit with the kids....

 

Then we had Halloween which I was dreading due to Celia's Vampire phobia. We didn't venture out of the house but of course the first trick or treater that came to the door was a little boy in a vampire mask so she ran off screaming leaving the poor boy very miffed!

Last weekend we had the pleasure of attending our friend Tommy's wedding down in picturesque Sorrento. Tommy is an old work colleague of mine from our London days although as you can tell from the photos he is a true Scot and Rangers supporter therefore he and Andy hit it off when he moved over here to be with his lovely fiancé Brooke. It was our first Aussie wedding and we had a wonderful day (enhanced by the fact that Reese babysat the children all day and most of the night!).

It is what they call Spring carnival in Melbourne this week and for those that aren't familiar with this occasion it basically means the place goes nuts over horseracing, so much so that Tuesday was a public holiday for what is affectionately know as the race that stops a nation. Thursday was Ladies Oaks day and although I didn't actually make it to the races I did attend a Ladies Oaks day luncheon. It was in aid of The Childrens Cancer Centre so a few of my mother's group friends and I went along to Sandringham yacht club in our obligatory fascinators/hats and a select few managed to stretch the luncheon out until 10.30pm! (two of which were of course myself and my friend Michelle) The day raised over $32,000 and there were a few emotional speeches from fellow cancer mums which resulted in some mascara reapplication afterwards!

 

In between all this social activity we've had a few hospital visits (scheduled lumbar puncture and chemo 2 weeks ago, chemo on Friday and an unscheduled visit on Wednesday due to Celia developing a rash around her port which the doctors couldn't identify but which seems to be fading). We also had a few doctors/nurses appointments (Max had a chest infection, Mabel had her 12 month check up and Andy and Mabel had the flu jab which is a requirement for all Celia's family members) and Celia also had 2 psychologist appointments so as I said it has been a busy few weeks which must be a justifiable excuse for not attending to the blog??!......

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!) 

Happy Birthday!

 Celia remained in good spirits last week so in anticipation of her being OK on Sunday (her 5th birthday) we did a bit of baking and made a loose arrangement with 3 kinder friends to go to a showing of the Little Mermaid.
When Sunday came around she had a bit of a cold but the excitement of the day kept her spirits up so we went to the cinema on a beautiful sunny 24 degree day where we met Bettie, her best friend; Dylan, her boyfriend(!)   and Ella, another kinder friend. Max came too and was totally enthralled as it was his first cinema trip.
 Meanwhile, back at the ranch, Andy and Mabel laid out a birthday lunch complete with chocolate birthday cake which was another first (Andy's first cake) and it was a lot more successful than my feeble attempt two years ago for his 40th.
By 2pm birthday celebrations were over which was a relief as we'd been to a party the night before and a 10am screening with a bunch of pre-schoolers is not the ideal way to sooth a sore head!
Tuesday's blood tests showed that Celia's neutrophils (infection-fighting white blood cells) had recovered so Wednesday's visit to the cancer centre went ahead. She was first on the lumbar puncture list so we were there for 8am and didn't leave til 5.45pm as she had to get 3 different chemo drugs and be on a hydration drip the whole day. I asked why the drugs couldn't be administered while she was under the general anaesthetic and the reason is a safety precaution (to prevent any chance of a drug mix up) so Celia had to withstand a new traumatic method of administration which involved the chemo being injected into her thigh. This wasn't actually painful as they inserted a 'butterfly' tube under the anaesthetic, but when she caught sight of the huge needle she got hysterical again. The play therapist tried for about half an hour to calm her but I think that just gets her more worked up so the next day when the nurse came to our house for the thigh injection I told her to do it quickly while I held her. As you can see Max was witness to all this drama but once he had quizzed the nurse about what she was doing he seemed OK with the situation! She got the thigh injection on 4 consecutive days and if her blood counts are high on Tuesday this will be repeated next week. Happy Birthday Celia!