I still find it very hard to recount Tara’s journey without getting quite emotional, but it is getting easier, as she is doing so well now – so here goes:
|Around the beginning of June Tara started squinting and walking less confidently. We took her to her doctor’s practice, who referred us to our local Eye Hospital – the doctor who saw her did not suspect anything more amiss than the squint. We were advised the appointment may not be for another 6 weeks or so, and so somewhat worried, that night we phoned the Eye Hospital’s Outpatient Department to see if we could take Tara along immediately. Unfortunately we got told that we should wait for the appointment Tara’s doctor was arranging. Eventually we were given a slot on the 4th August which would prove to save her life….|
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, was getting more and more lethargic, and was complaining that her head hurt. She even vomited in front of her doctor! But every time mum’s intuition was dismissed by the doctors she saw – Tara was attributed with various minor complaints, such as earache and a cold – she was even offered Tamiflu – this was the midst of a panic regarding Swine Flu in the UK and it appears that drug was the medicine of choice at the time! The 2 weeks before Tara’s eye appointment were complicated further by her contracting her sister’s Chicken Pox. We took Tara to the local hospital’s Accident & Emergency department at the end of that bout of illness, just a day or two before she was due to go to the Eye Hospital, since Tara was squinting quite badly by this time, was getting more and more sleepy, and had stopped walking altogether. However, the doctor put all that down to the Chicken Pox.
On the 4th August we finally got to see an Optometrist at the Eye Hospital – but the diagnosis was that Tara was long sighted – apparently they often saw children of that age who were long sighted and who had developed a squint and stopped walking! So they referred us to see the Eye Hospital’s Optician the next day to have glasses fitted. Thankfully the Optician we saw was the first health professional that was ‘switched on’ – Tara’s symptoms rang alarm bells, so she referred her to the Paediatrician. Again, we were lucky this person was very experienced, since they suspected something seriously amiss and saw Tara immediately. They spotted fluid on the Optical Disc indicating Intracranial Pressure, and Tara was immediately admitted to the local Children’s Hospital for observation, before an MRI scan the next day. Our understanding is that if Tara had not been diagnosed correctly at this time she would have simply “fallen asleep” in the next day or so, and the thought of Tara not waking up next to her dear sister whom she sleeps with is almost too much for us to bare. We are so thankful we have not had to cope with that. By this time it was August 5th – Tara’s sister’s birthday, and Tara was allowed home for a couple of hours to blow out candles on a cake before our world was about to change…..
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 brain fluid 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. We have since learnt that the tumour proved to be a Grade 1 Pilocytic Astrocytoma, for which the prognosis is very good should complete resection have been successful (we’ve read somewhere that 90% of patients have a 25+ year life expectancy). She spent another twelve days making a remarkable recovery in hospital, managing on the tenth day to pull out her External Ventricular Drain (EVD) which was draining her excess Cerebrospinal fluid (CSF). They simply stitched her up after that incident and she got discharged a couple of days later without having a shunt fitted to cope with any onset of Hydrocephalus that might have developed as a result of the tumour. But the day after discharge mum noticed that Tara’s scar from her operation was moist. It proved to be leaking CSF – we had been home less than twelve hours but had to go back into hospital since it was clear Tara was suffering from raised pressure indicating Hydrocephalus. She was refitted with an EVD, and then we had to sit and wait another ten days whilst any signs of infection disappeared before she could be fitted with the shunt she obviously needed. We were finally discharged on September 2nd.
A month on and Tara’s doing really really well, 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 not to be the case. Immediately after being fitted with the shunt Tara could hardly stand (the tumour was in a region of the brain that affects balance), but she’s now walking pretty well, and we reckon she would have been running by now if it weren’t for dad! She’s also been fitted with glasses to help with her squint. But otherwise she’s a picture of health.
We recently had Tara’s first follow up appointment with her surgeon – he was so pleased to see her doing so well. He was less pleased when dad mentioned that he would like to take Tara to see a very experienced Cranial Osteopath he had been recommended, or when dad focused on life management issues regarding the shunt (and not so much about the tumour). Given the surgeon’s reaction Tara will not be seeing the Osteopath. Even though we feel it would be right for Tara, we are unwilling to go against the surgeon’s wishes; after all, he is Tara’s primary carer, and so for the time being whatever he says about Tara’s healthcare, goes. We did however make no apologies for concentrating on the shunt during the meeting – for us, as Tara’s parents, her everyday health centres around the successful operation of that device. We trust the surgeon to look after the tumour…..
Tara’s next MRI is booked for the 20th January, when we shall learn whether all the tumour was removed and what lies in store for her next. We are of course hoping the surgeon managed to get everything out during her first operation, but so be it if that’s not the case.
Meanwhile mum, dad, and older sister are just delighted to have Tara back amongst us looking so well, and we are all grateful to have been blessed by the love shown to us by everyone who has heard her story.