A tough weekend

I think this was probably the hardest weekend we've had so far. The blood results from Friday were not good and her platelets were very low. Looking on the bright side however, at least the blood test worked this time plus they weren't so low that a transfusion was needed immediately so it was booked for Monday morning.
Celia cannot walk at all now although sometimes she forgets and ends up falling off her chair onto the wooden floor so lots of tears over the past two days. Celia will not let anyone else help her and now Max wants in on the act and insists that mummy has to help him with everything. Add to this the fact that Mabel has been constantly nursed for 6 weeks so now cries whenever she is set down,  I am of course dreading Andy's parents leaving tomorrow.
The good news is that her platelet count recovered and she didn't need a transfusion this morning so next trip to hospital is Wednesday for the bone marrow operation and lumbar puncture.

The week Celia was diagnosed was supposed to be the week I toilet trained Max and introduced Mabel to solids so naturally neither happened.  Mabel turned 6 months a few weeks ago so I could not put it off any longer and needless to say she is wolfing the food down from day one. As you can see she is the image of Max with an appetite to match:

 I am afraid there have been no big Annabel Karmel 'cook off' sessions and Mabel will be packet fed for the foreseeable future. All that pureeing and freezing ice cube trays is overrated anyway!

Celia insisted on another trip to the park yesterday but again, she just lay there looking ill and miserable and one mother actually came up to me and asked me what was wrong with her, to which I replied "she has leukaemia". She looked horrified and then started to tear up and promptly scuttled off. I suppose I'd better get used to it.....

 

Glimses of the old Celia

Celia is now very "wobbly" as she calls it and naturally gets upset when she falls over as she doesn't understand what is happening. A few times it's happened on the stairs so now I'm terrified she will go head first down them and have instructed her to go on her bum like when she was a baby!
I took the three of them to the park yesterday (again on Celia's insistence) but she fell just getting from the car to the grass and then just lay there. It was packed as it was a public holiday here and I could feel everyone staring at us thinking why has that terrible mother dragged her obviously very sick child out of the house. Anyway, Max had good fun running around like a lunatic and impressing the girls with his gymnastic expertise as you can see below.

   I think I might have done my back in at the park, however, as I had Mabel in the sling and was lifting Max onto the swings and lugging Celia around. Why didn't I get the double buggy out!?
In general, Celia is in better spirits and yesterday was back to her caring big sister role for a while (asked me how many mls Mabel had drunk from her afternoon bottle and was checking her nappy!) which is such a relief cause on Wednesday she bit Max' lip and Mabel's finger, both unprovoked, which is so unlike her.
We had another blood test at Sandringham hospital today and it went much better than last time so that is great news and a huge relief for the nurse who told me she hadn't stopped thinking about the carnage she had caused on Monday, poor woman!
My next worry is Celia catching Max's cold. Mabel has caught it and I can feel it coming on but amazingly Celia has yet to get it. I sooo hope I haven't tempted fate by writing that!.....  
  

A bit shaky

Another side effect of the chemo has started to kick in over the last couple of days. Celia now is quite shaky on her feet and has fallen over a few times. This is apparently a relatively common side effect caused by losing the feeling of the nerves in the feet. It was a bit of a shock for everyone when she got out of bed today and immediately collapsed in a heap on the floor. Still, she got up and on with the day and was actually a little more happy than of late. Granny and Grandpa reported that she didn't sleep at all today and was alert enough to watch lots of TV. She even said she liked her new bob. I never thought that I would be grateful to hear that my children spent all day watching TV but we're living by new rules now and just making them up as we go along.
Countdown to the next big milestone is on now. One week to go to Day 29 when we enter the next phase of treatment and perhaps learn a little about what is in store for us in the next 6 months.

More pressies!

On Sunday we had a lovely boat trip up the Yarra to Williamstown and back - Celia sat in the buggy and stared at the floor the whole time but she insisted that we go and the hospital said not to wrap her up in cotton wool, so we went. Max absolutely loved it and had everyone on the boat in stitches screaming "GET DOWN!" as we went under each bridge (there were about 8 - each way!) He also got to 'drive' at one point so was very chuffed with himself.

Monday morning saw us back to the usual routine of blood tests but we went to Sandringham hospital for the first time which is only 5 minutes away. It is such a small setup compared to Monash and basically the pathology department is one woman who mans the phones and does the bloods. She did apologise for not being very experienced at finger pricks but I didn't realise quite how inexperienced she was until the room looked like a massacre had taken place. There was blood running down Celia's arm, it was all over the chair, the floor, her and me. She hadn't put anything down to catch the blood and she looked like she was about to cry she was so flustered. Not surprisingly, we got a call later from the cancer unit saying the bloods had clotted so no analysis could be performed therefore the process would have to be repeated at Monash.
 Celia was a bit traumatised by the previous day's fiasco and was screaming that she didn't want any more finger pricks - little did she know that the finger prick was the least of her worries as Tuesday is chemo day and that means getting a cannula in. Her veins are not holding up well and they had to try 4 times today - by the fourth attempt I was a blubbering mess and couldn't look at her.
 As the only thing that she wants to do is eat these days, I rewarded her bravery with a sausage roll from the café. This has become a bit of a ritual and each day the request for a sausage roll gets earlier - as you can see the steroids really are boosting her appetite....

 Once again all blood tests were positive and no transfusions were required so we got to leave at 2pm - the earliest to date.
Then when we got home another huge package awaited us, this time from my friend Kelley. She really had gone over the top with the amount of stuff she had bought Celia but the smile it brought to her face was priceless. Celia now has a pile of Thank You cards to draw once she gets her mojo back as she got some lovely packages from her friends Layla, Bettie and Ella last week, not forgetting the pictures and presents from Daisy, Emilia and Sarah the week she was in hospital.
    

Me and Celia get the chop

Once again we've had hospital visits 4 days out of 5 and Celia is really struggling. She is totally withdrawn - she spent 6 hours on Tuesday just staring into space and blanking all the nurses that spoke to her) but I am hoping she will revive slightly with the promise of 2 hospital free days ahead. We also got the go ahead to have blood tests done at our local hospital which is 5 minutes drive away so that should cut down on one day a week's traveling time. Most of the time in hospital was spent waiting on blood test results (which were all positive so no drips or transfusions needed!)
As you can see from the pictures below Celia got her bum length mane chopped off yesterday. I was so worried that she would freak out about it but she just sat there and said nothing. I have tried to explain about the hair loss but she just turns away and says she has no questions, although she has started to twirl her hair round her finger every waking second which she never did before. I was a bity teary but I got a grip of myself and thought if Celia can hold up so can I.
 I also felt better knowing her hair was going to a good cause as Candy's Hairdressers has a hair donating service so some other child with cancer will get a wig made from Celia's hair!

As you can see I also went for the chop as a gesture of solidarity but I think it was actually the best haircut I have ever had so should have done it years ago!
I think it will be some weeks before the hair loss gets noticeable as she has such thick hair like her mum and granny but it is starting to come out when I brush it which is a small inconvenience in the grander scheme of things of course.
 Oh, I nearly forgot - it was also my birthday yesterday and as well as lovely presents I got to go out in the city for dinner with Andy. I am sooo going to miss having the inlaws to stay!

Mayonaise and Tomato Sandwich...for breakfast!

The wierd and wonderful food habits of a Leukemia child continue to amaze. This morning's request was for a tomato and Mayonaise sandwich for breakfast. Celia turned up her nose at the two weetabix with raspberries I had laid out for her, but then decided to scoff them anyway before taking her sandwich as a second course.
Today was weekly chemo day and it ended up being a long and uneventful hospital visit with Celia in her zombie-like state all day. She didn't even cry when having needles inserted. Her lethargy continued at home and she was fast asleep for the night before 7pm.

Ups and downs

It was lovely to have Celia home all weekend and it was made even better when we had quite a few glimpses of 'real Celia' back on Sunday. It was a beautiful morning, we all woke up bright and early (thanks to The Masters) and Celia had livened up significantly since Saturday. We took our opportunity to make a long-overdue trip to Melbourne's royal botanic gardens in South Yarra to show my parents around. Celia did some walking and paddling and we all enjoyed a coffee overlooking the lake in the autumn sunshine

Unfortunately, Monday saw a return to tired, lethargic, grumpy Celia - even when friend Daisy came round to say hi. She had a short and tearful visit to hospital to give a blood sample but apart from that she took up residence on the sofa with a blanket for most of the day. She didn't even bother with TV. Never mind - ups and downs will be the way things go from here on in I guess.


 

Tired little bossy boots

So the side effects of the treatment are definitely kicking in now. Celia's energy levels have dropped markedly in the last few days. The majority of time seems to be spent snoozing on the sofa or in her bed and she tends to conk out completely around 6pm. I think she has even grown bored of Dora the Explorer DVDs.

She does however find the energy at times to exhibit some comical behaviour - The last couple of mornings she has made very clear and specific demands for runny boiled eggs for breakfast (at 6.30am) and then she sits at the table impatiently waiting for her demands to be fulfilled. Today she also decided (about 7.30 am!) that we were having fish and chips for dinner and retreated to the sofa to look forward to this highlight of her day to come. Later in the day Celia decided we must all go to the beach - she wanted a paddle. It didn't matter that it was dull and threatening rain, Celia wanted to go. Of course, ten minutes after we got there she was too tired to do anything,  it started to rain and Max got stung by a wasp so it wasn't our most enjoyable ever trip to Half Moon Bay. But we did get our fish and chips!

DVD overload

As Andy is easing back into his work I thought I should take over blogging duties.
As expected it has been a tough week - thankfully not as distressing as last week with round the clock blood tests but spending 4 out of 5 days in the outpatients unit is no fun for a 4 year old (or a 40 year old who has no internet connection for that matter!). Celia spent most of that time hooked up to a drip so we were pretty immobile which meant TV & DVD overload of course - so much for the '2 hours of telly a day' rule!
Unfortunately the more I talk to other parents the more I realise how naïve I was being last week thinking "We can cope with a once a week visit for chemo" because getting the chemo is the quickest and easiest part of the whole process. Stabilising her various counts is where the problem lies, be it platelets, red blood cells, neutrophils, electrolytes etc and we have had transfusions of all of them this week. Then we encounter the infections that she is likely to pick up due to her non existent immune system so basically we can't plan anything more than half a day in advance and I have stopped making her any promises as they have been broken so many times over this past 12 days.
Anyway, moan over as it is almost the weekend and indications are that it should be a blood tests free 2 days! Oh and Mabel started rolling this week - it's bad enough being the 3rd child without being 3rd child with a sick sister - thankfully she will be too young to remember the neglect!

 

Uncle Roger's iPad mini

Cancer is horrible - as Celia will testify after another day of operations, blood tests and drips. However, you do have the slight upside of lots of freebies and presents as our Easter egg and cuddly toy collection shows. Today, "Uncle Roger" took it to a whole new level when an iPad Mini arrived in the post for Celia. Thank you so much Roger. Your generosity is way over the top. It will however be very well used and Celia is very excited.

She could have done with the iPad mini today as for the second successive day Celia hours sitting in a chair attached to a drip. Her electrolytes are still lower than expected and so she needs more fluid in her system to help the chemo flush out the cancer cells. She is coping with the boredom extremely well and is just focusing on her big dinner at the end of the day.

Another big positive today is that Celia has definitely mastered the art of taking her medicine. It now all goes down morning and night without a hint of complaint. Life and routine of being a long term patient seems to be taking shape. It is not fun, but it can be managed.

Tomorrow will be an interesting one for Lydia. Mum and Dad are going away for a few days to visit friends in Northern Victoria and I am going back to work for a few hours. Lydia will be back to coping on her own with three children. For me, it will be good to be busy and take my mind off the situation. I get the feeling that Lydia is ready to get into a routine too and won't be too disappointed to have the house to herself again.

Celia is back in to check her levels tomorrow. Hopefully just a short visit and then the all clear until chemo next Tuesday - fingers crossed.

Hungry hungry hungry

"Mummy, what's for dinner tonight?"
This was the first thing Celia asked when she woke up at 6.15am this morning.
The doctors had warned us that increased hunger was a side effect of the steroids Celia is taking and today this really started to kick in.
It was a long day in hospital with the patient receiving more chemo and platelets. They also decided to put her on a drip for a couple of hours as her blood count was a little low and the pace of killing the Leukemia 'blasts' had slowed. There was a lot of squealing as the canular was inserted this morning but apart from that Celia was a complete hero, sitting calmly all day from 10am to 6pm watching TV, drawing or playing with the iPad as the nurses carried out their procedures.

Running out of fingers to prick!

Luckily we had brought plenty of food as her appetite was insatiable and the stir fried beef with ginger when we got home was worth waiting for, albeit a lot later than usual.
Tomorrow is an early rise for a return to hospital for another operation, starting at 8am. She has to fast until after surgery so it will be interesting to see how her new monster appetite copes without breakfast.

Day trip to the Dandenongs

An hour to the northeast of our home on bayside is the altogether more sedate pace of  Sassafras. This is a little bit of quaint Englishness transported to Victoria - Think tea-rooms, bookshops, country pubs and antiques.

As the sun was shining and Celia seemed in good spirits this morning we took ourselves out for a little day trip with Granny and Grandpa to see Sassafras and the Dandenongs Hills. Everyone had a lovely time and my parents were grateful to see something more of Melbourne than the joys of Hampton East. Celia was a little tired at times and needed a big sleep on the way home but really it was hard to imagine that she's in the middle of chemo at all, especially as she sat in the sun and scoffed pie and potato wedges at lunchtime.

Also this afternoon, the most amazing delivery of beautiful fresh food arrived, courtesy of my work. Thanks Deloitte. Mum and dad expanded their normal palate somewhat and enjoyed some fresh salmon with an oriental salad for dinner. Celia and Max enjoyed it even more and couldn't get enough of the fresh pepper, carrot and Chinese cabbage.

Medication time (with meals) is always tough but Celia is definitely getting used to it. Tonight she even said that the yellow mouthwash that she detested two days ago was "alright" - big progress.

Reality kicks back in tomorrow with our first outpatient visit to the Children's Cancer Centre - more needles and chemo awaits. I don't think Celia really realises that she needs to go back tomorrow (even though we have told her) so I'm expecting tears in the morning. Lydia and I will do this first one together - from then on in the routine will require us to divide and conquer.
And I do need to start planning for a return to work.

Milestone 1: Inpatient becomes outpatient

After eight hard days the doctors gave the green light this afternoon for Celia to come home, and what a lift that has given us all. She was very drowsy again all morning before perking up at lunchtime when a positive blood test showed that she could probably go home. 

Back at home this evening Celia was a child transformed temporarily back to her old self - playing, eating, smiling, even taking her medicine with only limited protest. 

I'm looking forward to a long and peaceful night's sleep for the whole family before embarking on Week Two and the anticipated increasing impacts of the side effects.

Celia is now officially an outpatient.

A better day

After a very groggy start to the day and more tears over blood tests and medication Celia perked up significantly around lunchtime. Some playtime with Max was followed by a substantial lunch of fish cakes devoured enthusiastically. In the afternoon there was a lovely visit by kindergarten friend Sarah and some good news on the continued decimation of the 'blasts' (cancerous cells). Fingers crossed she may get some time outside of hospital in the coming days.
It was an absolutely beautiful autumn day in Melbourne (27 degrees) so I took the opportunity to escape Leukemia for a few hours and take Mum, Dad, Max and Mabel to Mornington for a dip in the sea and some fish and chips. Lovely. Followed this with a comedy show and a couple of beers with a friend in the city. Walking along Southbank on a balmy night was a great reminder of the wonders that Melbourne offers and a welcome distraction for a couple of hours.
Time changes tonight, so bye bye summer. Hello winter...and good luck Ulster in the Heineken Cup. 

Too many drugs for a 4-year-old

Leukemia week one complete and we're all still hanging in there.
I'm sure there will be many tough days ahead but today was definitely the first really really hard one for Celia. The poor darling started her day at 5.30 am with a blood test and followed this up with some steroids and oral chemotherapy at breakfast time. Straight after breakfast she had a 3-hour blood transfusion, supported by some morphine. By lunchtime she moved on to another major dose of chemotherapy (Asparaginase) - the only one of this type she will have all month. By dinner her drug cocktail had really ramped up to include

• More steroids
• Allupunona to reduce uric acid in her blood
• Boctrim, which is to prevent bacterial infections in the stomoch
• Ranitidine, to prevent gastric ulcers
• Pain relief medication
• More oral chemotherapy
• Laxative
• Two separate mouthwashes to prevent infections through the mouth (4 times a day)

The New Bedtime Routine - Storytime was much more fun than this

Not surprisingly she was conked out and staring at the TV like a total zombee by 4.30pm - refusing to eat, drink, speak or move.
Highlight of the day for everyone was a two minute Facetime conversation between Celia and Max at bedtime that saw both of them beaming from ear to ear as they wished each other goodnight. Oh, and my mum and dad extended their stay by a couple of weeks until the end of Aprilwhich will really really help us out.
Tomorrow is another day! Thank goodness.

A tour of the Monash Children's Cancer Centre

Thursday was a pretty full on day with plenty of new stuff to take on board. Celia was pretty tired and lethargic at times but positive on the whole.
Spent the morning enjoying some quality 'dad time' playing matching pairs with her favourite Dora cards, having a coffee in the autumn sunshine and even playing outside for half an hour (all with the ever-present drip in tow). Had a few more tears getting blood samples - they had to do it twice as the first sample didn't work. That is the umpteenth time this happened. She is definitely getting braver on the pin pricks now though. In the morning I also learned about the latest addition to her daytime drugs cocktail - two separate oral hygiene drugs (basically mouthwash) to be taken four times a day for the foreseeable future. Infection of the mouth is important to avoid as we are so dependent on having her able to keep swallowing tablets etc.
Her appetite is still pretty low so she was very tired by 12.00 and had a big two-hour nap at lunchtime  allowing Lydia and I to have the luxury of a lunch together and time to chat in the excellent family centre (Ronald McDonald) which is basically an area for families of sick children to chill out and relax, have a shower, a snooze, cup of tea etc. This is a volunteer run centre and a really excellent facility. I just wish it stayed open past 9.30pm as it would be a great place for adults to relax once the children are asleep in the evening.
After lunch we had a tour of the children's cancer centre which is the outpatients facility that Celia will visit weekly from next week to have her various ongoing treatment. In all likelihood Lydia, Max and Mabel will spend most of each Wednesday there on an ongoing basis. It is well laid out and equipped with play areas and outdoor space but I imagine will be pretty crowded on a typical day.
We had a long chat with Kate, who is our nurse in that area and learned the outpatients process.
Later in the afternoon we learned that Celia's latest blood test showed a very low red cells blood count (a sign of anaemia) and that she needed a blood transfusion. This is fairly common apparently and will probably happen several times in the coming weeks. They didn't have the right blood available today (remember to give blood regularly everyone) so it is scheduled for Friday morning. It certainly explains her tiredness today.
Despite feeling a bit weak Celia was able to end the day making clay models and painting them with mum while I managed to escape to feed, bath and bed Mabel and Max and even catch up with my 5-a-side team to lend my vocal support in the second half of a narrow 12-6 defeat. (P3, W0, L3, F12, A28)

Celia's Leukemia Journey - a new focus for the blog

Celia - a week ago

Easter Saturday, 30th March 2013, is a date that will be stamped firmly in our mind for a long time. The day we learned Celia had Leukemia - aged 4 years and 7 months.

Lydia had called it, in fact we both had, a one day earlier. Google diagosis can never be recommended but in the car on a long journey back from a largely enjoyable family holiday in Bright, mobile technology had convinced Lydia that the small symptoms she had noticed over a few weeks had combined to spell out a very worrying conclusion.
It was Easter holiday weekend and, ever the optimist, I suggested we wait to see the doctor on Tuesday. Lydia insisted on a trip to A&E on Saturday instead. Six short hours later and our life has changed forever, or for the next 2.5 years at least.
For the record, the symptoms were

• a few nosebleeds (only 2 that I can remember)
• some minor complaints about sore legs and sore tummy
• looking a litle more pale than normal
• finally, and the one that started me worrying just a little, an increasing array of small blood spots under her skin on various parts of her body

And so, on Saturday afternoon, in a state of complete and utter shock Lydia and I were sat down and explained at a high level the journey that faced us over the next few years. To be honest, I remember very little of the conversation - but thankfully it has been repeated in more detail in subsequent days.
The main point, that we needed to hear, but weren't yet sure we could believe,
"This is a curable disease and survival rates are growing all the time"
Celia was straight to the childrens ward and hooked up to a drip - to help build her strength in preparation for chemotheropy.

Easter Sunday 31st March 2013
After a pretty sleepless night on a pretty uncomfortable (but not as bad as it looked) camp bed beside a somewhat dazed and confused four year old who shed a few tears we began to face the realities and practicalities of dealing with cancer.
We met the consultant oncologist, Peter Downie who calmly and honestly talked us through what was ahead without going into detail as the full diagnosis of Celia's condition would not be complete until Tuesday.
I swapped shifts with Lydia and with Max and Mabel in bed I went into the garden (so Mum couldn't hear me) and spoke to my boss Andy, telling him not to expect me in for a while. As I spoke to him it dawned on me just how scared I really was. Telling people about it is much tougher than just getting on with it.
I then went inside and googled "Childhood Leukemia." Big mistake. After 10 minutes reading I went to bed shaking with nerves and proceeded to get much less sleep in the comfort of my own bed than the previous night in the hospital. I've concluded that I'm much happy being with Celia in hospital seeing what is happening to her than being home thinking about it. I resolved to focus on positive actions rather than "what ifs"

Easter Monday, 1st April 2013
On the clinical front not much was happening on Monday. Celia had been on a constant drip since Saturday helping hydrate her and prepare her organs for the battering to come, but until confirmation of the details of her condition on Tuesday, Monday was basically a day of waiting.
Grandpa came in to see Celia in hospital for the first time - Did I mention that my parents are here on holiday? Great timing! And provided mum can keep a handle on her natural pessimistic tendencies (or at least keep them hidden from the children) this will really help us in the coming weeks.
Apart from a very teary handover of shift between mum and dad (she wanted mum to stay) Celia was in great form. We actually had a really fun evening playing cards, reading books and watching TV. She slept really well, managed a blood test without tears (a first) and woke up happy and refreshed. I was still terrified, confused, ill-informed, but we were ready.

Tuesday 2nd April - first operation, first chemo
On Tuesday morning Celia had the first "lumber punch" operation. This is where, under general anaesthetic they take a sample of fluid from the bone marrow in her spine. It's a dangerous but short procedure that will be completed several times in the coming weeks. The readings from this operation were to give confirmation of the type of luekemia present in her blood. Apparently there are two main types - one that is hard to treat and with lower survival rates and one that is easier to treat and has better survival rates.
After a nervous five hours we met with Peter Downie and several other doctors. Peter spoke slowly, clearly and reassuringly. He informed us that Celia had Acute lymphoblastic leukemia (ALL) - the 'better' of the two main types.
We then had a long and detailed explanation of what lies ahead over the next 2+ years with a strong emphasis on the critical next 29 days.
Celia will be taking three forms of chemotheorapy simultaneously - one oral and two intravenously. In addition she will have a multitude of other medicines and treatments to control side effects. I have lost count already, but we'll get a handle on it soon.
Lydia and I together watched the first small dose be admistered - a very simple 5 second push of fluid through her drip. We now just wait for it to start working.
I went home on Tuesday in really good spirits - for the first time in 4 days I'm convinced our baby will definitely live through this thing. A long way to go - but we're under way.

Wednesday 3rd April
Lydia and I are very much in action mode now. Our night-about shift system seems to work OK. Tuesday night was a pretty traumatic one for Celia (and Lydia) with all sorts of problems trying to extract blood samples. The result was practically zero sleep all round. I didn't escape either, with Max and Mabel both deciding it was time for sleepless nights of their own at home - perhaps they have noticed a shift of parential attention in recent days. Still, at least their grandparents are still in town to babysit, although granny still can't face visiting "poor wee Celia" in hospital.
The lack of sleep, early effects of the treatment, complete lack of apetite and continued problems extracting blood from Celia's arms made today a pretty tough one all round. There were lots of cries for mummy tonight as we attempted a bath but we got thought and I'm hopeful of a good night sleep for both of us. The doctor's this afternoon said she is already responding well after 24 hours. I guess it is just a case of getting used to the tiredness and the tears - underneath it all, hopefully the treatment will be doing its stuff.