Looking forward, looking back

Over the last few months we’ve been very quiet on the blog during a period where we’ve had our ups and downs. At the end of October last year, we were due to fly out to Europe when our number three, Calvin, had a series of febrile convulsions stemming from elevated temperatures. Due to the proximity of the flight time it was determined that we’d postpone the trip and await Cal’s recovery, which we did. Trip re-scheduled for a month later and all was well with the world. Cal had made a good recovery so we were Europe bound (my first time back in 20 years – and a first for Sarah, Lexie, Cesca and Cal). We’ll have plenty of info about Europe on the blog soon so I’ll move quickly with the story.

We returned home a few days before December 25, ready to plunge back into the photography world and ready to celebrate Christmas in a small family way after a big trip half way round the world. We travelled with my parents, which was just lovely, but Dad was quite ill throughout the trip and was hospitalised in Frankfurt a few days before our return. They could not isolate the problem and gave him clearance to return to Sydney.

It was a pretty long flight back, and we were glad to arrive in Sydney on the Friday morning. Mum and Dad pretty quickly went to hospital where it became apparent that he would have surgery that evening (I’ll keep the surgical details away from the blog).

Ridiculously early the next morning Cesca took ill and for the next 36 hours deteriorated. At this point my worry was still with Dad and I had spent some time at the hospital with him as he started his recovery post-op, which had gone well. Sunday afternoon, after getting back from seeing Dad at the hospital, we began to get very worried about Cesca. It got to the point late in the afternoon during a conversation with a nurse, that she took a turn for the worse, and began a series of seizures. She was taken by ambulance to Hornsby ER and admitted while tests were run. The scary part was what we were witnessing, a child that couldn’t stand (let alone walk), talk properly, had lost her memory, and couldn’t complete cognitive tests (eg touching her nose with her finger).

From our point of view we hadn’t seen anything like this before. It was terrifying to watch and very confronting. With the immediate realisation that something was wrong with her brain.

In the meantime, her siblings had started exhibiting some of the same symptoms, which had us admitting Cal to Hornsby the following morning. Lexie was within an hour of being admitted to hospital, but fortunately didn’t end up there in this round. The hospital did various tests on Cesca on the monday (Christmas Eve) and gave a diagnosis of Acute disseminated encephalomyelitis. The medical staff shorten this to ADEM. It’s a pretty rare event – on some figures it happens to about 4 to 8 people per million per year. Suffice to say we’d never heard of it before. ADEM produces multiple inflammatory lesions in the brain. For Cesca it meant the messages from the brain to the body were being disrupted.

She was transferred late on Christmas Eve to Westmead Children’s Hospital where she underwent typical treatment, which was very distressing for Sarah to witness as medication (steroids) were applied intravenously in the very early hours of Christmas morning. Poor Cesca finally got to sleep around 4am, then woken a couple of hours later for breakfast as they wanted her to fast before a lumbar puncture at midday.

Westmead Hospital takes wonderful care of their kids. Obviously children do not want to be in hospital at Christmas time, and the staff do everything they can to get those who can, home. However, some of them do need to be there. In Cesca’s case, she was treated to a wonderful Christmas morning, topped off by a visit from Santa and his Elves who brought a much desired Barbie doll.

Throughout the day, family and church friends left their family christmas lunches to come and spend some time with Cesca and Sarah. The visits continued during Cesca’s stay in hospital, as did many many offers of help for the home bound patients, for which we are enormously grateful. Owing to the fact that Lexie and Cal were ill, they couldn’t visit Cesca at Westmead, which meant our family was split in two for these christmas days.

Meanwhile, back on the home front, three patients were being cared for, with lots of Lemonade icy-poles being consumed in lieu of a big christmas dinner. Christmas evening, three became five patients as this particular virus pushed on with its nasty work. The next day I took Cal back to Hornsby Hospital as he was becoming dehydrated. While there I was admitted and given medication and a boxing day meal of two icy-poles. Fortunately, within minutes of arriving, Cal started drinking of his own accord which kept our visit there to only two hours – a family record during this time.

A dear friend picked up Sarah and Cesca from Westmead on the thursday and brought them home, and even went to the trouble to purchase a car seat as he didn’t already have one.

In the subsequent weeks, Cesca (and all of us) has been slowly recovering, and subsequent MRI has shown her brain to be now clear of lesions.

Two weeks later Lexie complained of abdominal pain. Another trip to Westmead as a precaution, given that if she had appendicitis they would have to operate at Westmead not Hornsby. Thankfully she was given the all clear after a day in emergency. At this time, Calvin was diagnosed with tonsillitis, which explained why he was again refusing to drink anything except for hot-chocolate.

It seems all to brief, and all too personal to write about this last couple of months in such a way. For Sarah and I this is the most emotional and draining period of time we have been through as a family. We are very aware that other families are suffering much worse in their lives, and we are exceptionally grateful that what we went through was fixable. We are very grateful for the many messages, thoughts, food, gifts and especially the prayers of so many friends, family, clients and complete strangers from here and around the world.

Recoveries are continuing – family incidents continue (a broken toe and cartilage pulled from ribs are the latest…) – life moves on – and we all love each other and appreciate each other more and more.

As a side note, we had the studio set up for a client for some corporate head-shots. We asked the children to pop down so we could grab some shots of them at this age – this illustrates the end of the 2012/2013 Henry illnesses…