Overview

the tamsin colley website

OVERVIEW

Tamsin Noelle Colley was born on 10 September 2002 at the Royal Hospital for Women in Randwick, Sydney, Australia, to Cathie Sherrington and Peter Colley. Tamsin followed her older sister Shannon into the world by almost exactly 2 years.

She weighed a robust 3.775 kg (8lb 5oz) and all signs were good. Her early development appeared normal and she was crawling from six months.

But she didn't get up and walk as expected, and her speech seemed slow. Cathie is a qualified physiotherapist (that's physical therapist in North American) and she particularly noticed odd things - for example Tamsin's hand movements and her assisted walking were unusual. From the beginning of 2004 we began to speculate on possible causes eg cerebral palsy and spina bifida.

The average age for children to start walking is 14 months and 90% of kids are walking by 18 months.

At 16.5 months Cathie obtained a referral from our family doctor to a paediatrician. He wasn't immediately worried but he took various measurements - including skull size - and got us to come back in 6 weeks when Tamsin was 18 months old.

That second visit showed that Tamsin's skull had grown considerably in that time and was beyond the normal range. The probable cause was hydrocephalus - swelling of the brain - caused by a build-up of cerebro-spinal fluid (csf) that was unable to drain due to a blockage.

Hydrocephalus in an adult would cause splitting headaches due to too much fluid trying to fit into a limited space. But a young child's skull is still very flexible and growing. So it had expanded to cope with the fluid. Tamsin had been waking at 5am in some discomfort, probably due to pooling of the csf while she was lying down asleep. But plenty of completely normal kids wake up at 5am on a regular basis so that wasn't a major sign!

The paediatrician immediately organised a CT scan. It took place a week later as at that stage the problem wasn't yet considered urgent. But a good friend who is a senior medical research doctor told us that it was probably a tumour. So Cathie and I put ourselves 'through the mill' of fear and misery well before the CT scan.

After the CT scan on 25 March the various radiology staff didn't want to meet Cathie's gaze, which was implicit confirmation of bad news. By that evening Tamsin was in the hands of neurologists and neurosurgeons at the Sydney Children's Hospital, Randwick.

The CT scan and the MRI (magnetic resonance imaging) scan immediately before the operation indicated the size and location of the tumour, while pathology tests (which took some days) confirmed that the tumour was a Juvenile Pilocytic Astrocytoma (JPA). It was located low down in the back of Tamsin's head. While a JPA is a benign, low grade tumour it will still cripple and kill and needed to be removed urgently.

When the tumour first started is unknown, but probably from soon after birth and possibly before.

It was 4cm in diameter and ball-shaped. It had consumed two thirds of the cerebellum - that part of the brain that provides muscle coordination - necessary for walking, using your hands and even talking. It was pushing up against the brain stem. If it had invaded the brain stem the prognosis for recovery would have been worse.

The medical literature says that the prognosis for JPAs is generally good. They are usually successfully removed in one or two operations and rarely recur. The overwhelming majority of kids survive the operation and live a long life.

But a good survival rate is one thing, and a complete recovery is another. While some kids do recover very well from JPAs, many others experience ongoing problems of various kinds - problems with balance, other coordination, eyesight, speech and more.

The site has been set up to enable friends and family to understand what has happened to our daughter and how she is recovering, growing and adapting to her changed life.

The site has been created in June 2005 - quite some time after the first crisis. We relied on bulk emails to our friends to update them, and those emails form the basis of the Update items here. The site also enables us to provide photos and medical images of Tamsin so that a broader audience can find what has happened.

Since Tamsin was diagnosed all of our lives have been turned upside down. But friends, family, work colleagues, our employers and others who we have met with a similarly sick child have all been a source of love, encouragement and support. Thank you. We also thank all of the physiotherapy and medical colleagues who have given so much of their time to help us, especially Eileen O'Neill.

Particular thanks are due to the director and staff of the POW Place child care centre, who gave us considerable support during the immediate crisis, and who have helped organise special support services to enable Tamsin to return to part-time child care.

Our special thanks to the doctors, nurses and allied health staff of the Sydney Children's Hospital who have provided Tamsin with the best medical care in the world (virtually all of it as a public patient - we are fortunate to have a great public health system in Australia).

Peter Colley and Cathie Sherrington, 22 June 2005

The whole family, October 2003 - before diagnosis