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.

Welcome Mabel Rose Kerr

As Mabel is 12 weeks old on Thursday it must be almost 12 weeks since our last post as Mabel was delivered the day after I wrote it at 34 weeks!
It all seems like a distant memory now but the day of delivery and the 10 days following while I was in hospital were quite traumatic. My recovery, however, has gone better than expected and Mabel is doing great.
So to summarise the past few months :
- I got home on 30th Oct to a lovely "welcome home" banner that the kid had made
- Mabel came home on 7th Nov
- My mum and sister arrived on 13th Nov
- Headed to Blairgowrie for 3 days on 2nd Dec
- Mum and Paula went home on 8th Dec
- Andy went back to work on 10th Dec
- Had a lovely Christmas day at The Rocks in Mornington with Andrea, Dan, Niamh, John and the 7 kids!
- Caught up with friends from Madrid/London days, Nicolas and Vinita, who were visiting from Singapore on Boxing Day
- Had a relaxed New Year's Eve at our house with the Leas and Regans and a top notch curry from Roti Boti! The kids had their first taste of a sleep over which resulted in the playroom looking like a war zone!
- Had Tommy and Brooke, an old work colleague and his fiancee, over for a barbie on 5th Jan - Max cried when they left as Tommy played flootball with him all afternoon. Andy still thinks golf is going to be his sport however!
The weather over the past 2 weeks has been amazing although Friday was 43 degrees and unbearable. It is major bushfire season and conditions in Tasmania and NSW are horrendous (102 fires burning in NSW alone).
Looks like the rest of the summer is set to be hot too so we may have a repeat of last year's conditions for the Open men's final which we are going to again in a few weeks - Murray, please don't disappoint us this year!

 

2 months down, ?? to go!

I have been in hospital for 2 months today and very nearly had the baby this afternoon! As expected I have had on off bleeding episodes throughout my stay but last night's was the heaviest to date and since I have reached the magic number of 34 weeks, I thought they may operate but the bleeding stopped so I am back in the medihotel.
The time has actually passed quite quickly. The hospital staff have been lovely and my friends have been so supportive offering to visit and mind the children.
Life has been very hectic for Andy and although the nanny was great with the children she wasn't a very good housemate so things unfortunately came to a head last week and she left on Friday night. After the initial shock and panic we put it behind us and I spent the weekend online looking for a new nanny on the fantastic findababysitter.com website. Andy interviewed 2 girls this morning and Maria starts tomorrow (she is Mexican so Andy happy as he thinks the kids will be fluent in Spanish by the end of the month!)
Andy spent the weekend catching up with his good friend Roger who flew down from Sydney and judging by the photos it was just what the doctor order.

Well, hopefully in the next post we will be announcing the birth of our new baby and  confirming that I am well on the road to recovery - keeping everything crossed!  

And I thought things were hectic last month!

So on my last post I was complaining about how hectic life was with the impending house move etc little did I know that fate was about to show us just what hectic really means! A few days after that post I had more bleeding, went to hospital, expected to be in for 24 hours monitoring but cut a long story short after 2 days of mixed messages and hospital transfers, I was told I would not leave hospital until the baby was born - my due date being over 3 months away! I spent the first three days in shock - being on the maternity ward with no sleep didn't exactly help my psychological state! Then I got moved to a room of my own and the reality of why they were keeping  me here started to sink in (need to be within 10 minutes of the operating table as there is a risk I could hemorrhage at any time with no warning). So I am fine but feel so bad for the children and Andy of course who had a sharp learning curve as sole carer for the kids while simultaneously moving house.
Anyway, I have now been in for 3 weeks, we (they!) have moved house, an au pair started last week, we celebrated Celia's 4th birthday and Andy has gone back into the office so the worst, hopefully, is over (maybe I should delete that as I don't want to tempt Fate again!).......

On the move again.....

So we resigned ourselves to staying put in Bentleigh as trying to co-ordinate a house move that did not involve paying rent on 2 places for a period of time or being left to find a decent house in the space of 2 weeks, was impossible. However, just as the lease on the only house that we liked was about to be signed I got an e-mail from our agent saying someone wanted to rent our place - not bad going considering we only had one veiwing and one application submitted.
As luck would have it, the owner of the house we liked was a fellow UK playgroup mum so she instructed her agent to bump the other applicants and give us the house (not very popular with the new agent as you can imagine but you have got to use any connections you have!) So we move on 27th Aug, the same week we fly off on holiday and have Celia's 4th birthday party - I think it will be a slightly hectic week!
Nothing we haven't dealt with before of course, but when you add in the fact that I am supposed to be on bed rest, then hectic is an understatement.
 Unfortunately I have Placenta Previa and as the risks and implications were not spelt out to me at the time of diagnosis, I continued life as normal - 3 gym classes a week, carrying a 13kg Max, climbing Hanging Rock (all you need to know is that it is very steep and I did it hauling the kids up behind me) then surprise, surpirse, bleeding started and that is when the hospital told me I shouldn't have been doing any exercise, lifting, stretching etc.

Hanging Rock

 I am hoping the condition will correct itself later in the pregnacy but for now, I've had to freeze my gym membership, hire a cleaner and get some extra childcare (the savings we are making by moving to a cheaper house have been instantly wiped out). It is times like these you really miss family.

The good news is that Andy won a bet this morning on Rory McIlroy (about $900) so that will help pay for the extra help and of course the fact that the new house will actually be cleaned properly is a also a plus!......
   

Birthday season is upon us

It was Max's 2nd birthday yesterday and I thought I'd get away without doing anything for it (he's hardly going to remember is he??) but then my mum sent over Happy 2nd Birthday balloons and banners and made me feel very guilty so I threw him a last minute birthday tea. Max had a lovely time eating and dancing with his girlfriend Layla and even though my cake was as dry as a bone as per my usual baking efforts and I forgot to put the sausage rolls in the oven AGAIN, I think everyone else enjoyed it too.

We have 5 birthday parties over 4 consecutive weekends (2 down, 3 to go) and so far I am getting very worried as Celia’s preschool friends are setting the bar very high. The party last week must have cost an absolute fortune but it really was a little girl’s dream (all the staff were dressed as Disney princesses and the birthday tea was held in a room that looked like a set from Alice in Wonderland!). I’m not sure what the done thing is back home but nobody has parties in their house here, they all hire somewhere (or someone i.e. Tinkerbell the fairy entertainer) which suits me fine as catering is not my strong point but it is sooo expensive. I think we may coincidentally go on holiday the week of Celia’s 4^th birthday as it would nearly be the same price!

We had a bit of good news on the finance front yesterday as the government is giving us expats a 3 month reprieve on the LAFHA benefit cut. We tried getting out of our lease as I was convinced we were paying too much rent for the house we are in but having done some research this week I was shocked to see what was on offer. So looking on the bright side, I now don’t think we are being ripped off, but the downside is that as of October we are renting a house we can’t really afford!  Maybe I should hire myself out as Tinkerbell the fairy and make a bit of extra cash but at 18 weeks pregnant I would make an odd looking fairy!

Our first Aussie baby!

As the title suggests we are expecting our first Aussie baby (due in November) although it won't officially be an Aussie of course as we are not citizens.
Being pregnant over my 40th birthday was not exactly how I would have planned it but I still managed to have a wonderful time. 14 girls went down to Rye on the Mornington peninsula for the weekend and not a child in sight for almost 2 days (well, not ours at least!).
We visited the Hot Springs where I had a facial with accompanying smoke ceremony (a bit weird?!) as I wasn't allowed in the hot pools due to my 'condition'! Then is was on to a beautiful winery called T'Gallant for lunch al fresco with live jazz - God, how I craved a few glasses of wine! Then we had time for a walk along Rye pier before dinner at a local wine bar - not a bad way to spend a 40th birthday.

The week before my birthday was Easter so we headed to a cabin down in Apollo Bay along the Great Ocean Road.

It started off at 30 degrees but nosedived to a cool and wet 9 degrees by the end of the week but we still a fabulous time and the children loved the cabin/campsite experience (Andy not so much but he will have to get used to it as I think it may be the way forward now that the government is getting rid of all our LAFHA tax benefits in July!) Yes, the expat lifestyle bubble has well and truly burst and the reality of living in one of the world's most expensive cities has dawned......