Pilocytic Astrocytoma - Tara's Tale

Dad tells Tara's story.

Tara Becomes Unwell

Around mid-June 2009 Tara started squinting and becoming less steady on her feet. She had just turned 2. She was taken to her doctor's practice about a fortnight later and she was referred to the Sussex Eye Hospital - they did not suspect anything more amiss than the squint. We were advised the appointment would not be for another 6 weeks or so, and so somewhat worried, I phoned the Eye Hospital's Outpatient Department to see if I could get Tara seen immediately. Unfortunately I was told that Tara would have to wait for the appointment.

Eventually Tara was given a slot on the 4th August, which would ultimately prove to save her life....

More Missed Opportunities

In the weeks leading up to that appointment Tara was taken to her doctor's surgery 5 more times. Mum was getting more and more concerned - Tara had started vomiting and was getting extremely lethargic. She was also complaining that her head hurt. One time she even vomited in front of her doctor! But at each visit mum's intuition that something serious was afflicting her daughter was dismissed - Tara was attributed with various minor complaints, such as earache and a cold - she was even offered Tamiflu! This was in the midst of a panic regarding Swine Flu in the UK, and obviously this was the drug in vogue at the time.

Tara was becoming less well as the weeks went by, and matters weren't helped when she managed to come down with her sister's Chicken Pox. But mum was getting more and more worried and so she took Tara to the local hospital's Accident & Emergency department at the end of that bout of illness. This was just a day or two before she was due to go to the Eye Hospital; by this time Tara was squinting quite badly and was getting  even more lethargic. She had also stopped walking altogether. Unfortunately the doctor at A & E attributed all those symptoms to Chicken Pox.

On the 4th August 2009 Tara finally got to see an Optometrist at the Eye Hospital. This time the diagnosis was that she was long-sighted. Apparently this person often saw long-sighted children of that age who were squinting and not walking! So Tara was referred to see the Eye Hospital's Optician the next day to have glasses fitted.

Tara's Serious Condition is Diagnosed At Last

Thankfully we finally met a health professional whose alarm bells rang. Tara's symptoms concerned the Optician and so they got her an immediate appointment with the on-duty Paediatrician who spotted fluid on her optical discs indicating Intracranial Pressure. Tara was then admitted to the wonderful Royal Alexandra Children's Hospital in Brighton for overnight observation, before an MRI scan the next day to determine the extent of her problem.

By this time it was August 5th - Tara's sister's birthday, and she was allowed home for a couple of hours to blow out candles on a cake before the family's world was about to change.....

Pilocytic Astrocytoma - A Good Prognosis

The scan on Tara on August 6th showed that she was suffering from a tennis ball sized tumour on the Cerebellum that was preventing her draining Cerebrospinal fluid (CSF) properly, and putting her in grave danger. She was rushed to Kings College Hospital in London, and arrived, in her surgeon's words, "on death's door." She was taken straight down to theatre to relieve the pressure on her brain (which got her out of immediate danger), and then she had to undergo a 12 hour operation to remove as much of the tumour as possible. The tumour has since proved to be a Grade 1 Pilocytic Astrocytoma, for which the prognosis is very good - Tara has every chance of a full and healthy life.

Thanks

Without the skill of Tara's surgeon at King's, Mr Sanj Bassi, we would not have Tara back amongst us lighting up our lives. I have been told that Mr Bassi was in the middle of a 72 hour shift when she arrived at the hospital - the year before I was complaining at having to spend 72 hours a week writing computer programs for the firm I was working for at the time! Mr Bassi has put that in perspective - I am in awe of such dedication, and the family will be eternally grateful to him.

We are also very grateful to the Optician and Paediatrician Tara saw at the Eye Hospital - quite simply, their prompt actions saved Tara's life. We have been told that if Tara had not been diagnosed correctly at this time she would have "fallen asleep" in the next day or so. The thought of Tara not waking up next to her dear sister, whom she sleeps with, is almost too much for the family to bare. We are so thankful we have not had to cope with that outcome.

Finally Discharged

Tara then began to make a remarkable recovery in hospital under the wonderful care of the teams in the Thomas Cook Children's Critical Care Centre and Lion Ward at King's - they were a beacon of light for the family during a very difficult time. On the tenth day she managed to pull out her External Ventricular Drain (EVD) that was helping her drain excess CSF, much to the dismay of mum. But they simply stitched her up after that incident and she was discharged a couple of days later. This was without having a shunt fitted to help her cope with any onset of Hydrocephalus that might have developed as a result of the tumour.

Unfortunately, the day after discharge mum noticed that Tara's scar from the operation was moist. It proved to be leaking CSF - she had been home less than twelve hours, but Tara had to be readmitted to King's as this was an indication that she was suffering from raised pressure indicating Hydrocephalus. She was refitted with an EVD, and then had to sit and wait another ten days whilst any signs of infection disappeared from samples of her CSF.  She was then fitted with the shunt that she obviously needed, and was finally discharged on September 3rd.

A Picture of Health

A few months on and Tara continues to improve day by day. She is now a perfectly normal, healthy looking 2-year old child, which is nothing short of a miracle of modern medicine. And that's despite dad falling down some stairs with her on his hip, and her being put in plaster for a fortnight with a suspected broken left ankle! Thankfully that proved to be a false alarm and her leg was fine.

Immediately after being fitted with the shunt Tara could hardly stand (the tumour was in a region of the brain that affects balance so she had to relearn such skills), but despite the odd tumble, she's now walking well. She's also been fitted with glasses to help with her squint.

What Next?

Tara's next MRI is booked for the 4th December 2009 and the results will be given to the family on 20th January 2010, when we shall learn whether all the tumour was removed and what lies in store for her next. Of course we are hoping the surgeon managed to remove everything, but so be it if that's not the case; we are confident that she is now in very good hands with the team at King's. Meanwhile we are just delighted to have Tara back in the family fold looking so well.

During the dark times immediately after Tara was finally diagnosed as suffering from a brain tumour, we encouraged everyone we knew to send positive energy so that it could be harnessed for Tara's wellbeing. We received this in abundance and we are convinced that this has contributed a great deal to Tara's remarkable recovery. We are very grateful to everyone who kept us all in their thoughts; it was a privilege to have witnessed humankind at it's best, and we feel blessed to have been shown so much love by everyone who heard Tara's tale.