Posted on
19 April 2009, under
Fatherhood; More Fatherhood articles...
Ciara in London
Ciara in London 2
Elliot & Ciara
After a few months of agony which was initially diagnosed as Juvenile Arthritis, my three year old daughter Ciara was diagnosed with Stage 4 Neuroblastoma - two days after St Patrick’s Day, 2007. Neuroblastoma is a tumourous cancer that occurs in infants. It’s reasonable rare – normally only 5 or so kids in Ireland will be diagnosed in a year. Ciara’s pain had become unbearable in early march and eventually it seemed to click with someone that it might not be arthritis. I will never forget the moment a group of doctors took myself and my wife Yvonne, into a private room and closed the door behind us. Up until that point, Cancer had not even been mentioned; it just wasn’t on our minds, however as soon as they closed the door behind them, it sprang in to my mind quick enough and I knew what they were going to say.
There are many clichés about what it’s like to discover your child has cancer, such as wanting the world to swallow you up, or turning to a new chapter in your life, nothing preparing you for it, etc. The clichés are there for a reason, most of them are true. As a father, the latter is of course not an option. There is an unwritten rule that the father has to be the rock, the unflappable provider, but without the strength of my daughter and support of my wife, I would be none of these things. After the initial paralysing shock, and as a member of the Internet generation, the first thing I wanted to do was to Google “Neuroblastoma”.
Using the internet to research your child’s condition is probably less than productive in the early stages. At this point you are yet to come to the realisation of what Cancer means to you and your family, and reading other people’s sometimes harrowing tales or a cold Wikipedia entry stating all the brutal facts, is something that should wait for a while. Keep communication personal - between you, your friends and family, and the professionals around you. There is very little the Internet can tell you that your child’s consultant can’t. And they will tell you in a sensitive way what is happening without labouring on things like “survival rates of under 5’s between 2002 and 2006”.
A kid in hospital means staying with them day and night, there is no way we could leave her alone But it seems we were lucky, some kids did get left alone for long periods while a parent had no choice but to go to work. Having a third person, in the shape of Yvonne’s mum, helped no end during the long period in hospital after Ciara’s bone marrow transplant. Mary gave Yvonne and I the opportunity to have a coffee break together now and then and a change of scenery. In addition, Mary did things and saw things, and went through immeasurable heartache with us, without having her husband by her side, something that can never be repaid.
During the very hard year of 2007, while Ciara was undergoing chemo, I had to try and hold down a job. Fortunately for me I had an understanding boss who was willing to be flexible with hours and working arrangements. I have the kind of job that just requires a laptop and internet access so I can work pretty much anywhere. Having a child going through a long spell of chemo beats moving house, divorce and redundancy hands-down for stress, and having strict deadlines at work were a problem, and offloading work where possible was essential. It was important for me to remember that I could pick up my career at a later date – my time with Ciara was the most important thing in the world.
In 2007, at any point, some test or another could have come back telling us that she only had a matter of weeks left - parents around us were getting devastating news often enough for the same disease. Yvonne and I soon lost count of the times we prepared ourselves for the worst. One thing it’s hard to get across to bystanders, be it friends or family, is that there is a strong chance it might not be all OK and that the worst can happen. When you prepare yourself for the worst, it’s natural to feel you are giving up on your child or that you’re failing them by not believing they can pull through. This couldn’t be farther from the truth. Self preservation is important, and you don’t always need to tell anyone but your most nearest and dearest how you feel.
One of the ways I maintained my sanity was by writing in a blog. Emails had been going back and forth to the family as soon as Ciara first went into hospital Christmas Day 2006, and these emails started getting pretty long. Three months later, after diagnosis, I realised we were in it for the long haul so I started Bald Kids and Bed Pans http://baldkidsbedpans.blogsport.com I don’t normally write but found keeping a blog very therapeutic and I was able to talk about things and feelings I would never have done in public before Ciara’s sickness.
At the beginning of 2008, Ciara was extremely sick and we had not left hospital since the previous October. In September 2007, Ciara had the surgery where she had the tumour and a kidney removed and few weeks later she had her last high dose chemo and a bone marrow transplant. As a result of the treatment she contracted a liver disease called Veno-Occlusive Disease, or VOD http://en.wikipedia.org/wiki/Veno-occlusive_disease This in itself has a poor prognosis, and it was impossible for us not to think that the last days were with us. I find it hard to look at photos of Ciara from only a year or so ago, she looks like a painted skeleton. At that time, tests for cancer were coming back clear and it seemed she had beaten that for now, but the VOD was killing her. Mid-January 2008 she was critically malnourished and on the verge of renal failure.
Call it a miracle if you wish, but all of a sudden Ciara took a turn for the best. She started eating and digesting food, her massively swollen abdomen started to contract and she was able to put on proper weight. In early February we were told we could go home. We couldn’t believe it. We had to clarify that they weren’t sending us home so we could “make the most of the last few weeks”, but that she was actually getting better! For a year Ciara had spent most of her time in hospital. During that time Ciara acquired a new baby brother. Finn was born while we were living at Ronald McDonald House, the parent’s accommodation on hospital grounds.
Since then, Ciara has only had to go in to hospital for checkups mostly, and is doing great in school. She’s just started going to acting classes and her swimming is coming on well. Apart from the fact that her hair doesn’t seem to want to grow back and the chemo has made her quite deaf, she’s just like any other kid. Well, actually she’s not just like any other kid. If you’ve ever met Ciara, you would know that she’s one in a million, and that’s not just the words of an obviously biased dad.
We have about four years to wait before we get the all clear, but for now at least, we know that everything is rosy. I can recall 18 months ago not being able to see the end of the tunnel. I found it difficult to picture a normal life with Ciara and yet found it unbearable to think of a life without her. But, for most thankfully, there is light. I’m not a religious man, many people find great support in their faith. I relied on Yvonne for that support, and, for that I can never thank her enough.
Elliot Tucker is blogging at www.elliottucker.net
For information on The Bubblegum Club please visit www.bubblegumclub.ie
For information on The Ronald McDonald House Charity please visit www.rmhc.ie
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