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| Celia - a week ago |
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
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.
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