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.