Genique's Recovery

In March 2016 our daughter, Genique, was diagnosed with a brain tumor growing from the optic nerve. It's called a Pilocytic Astrocytoma, but she calls it her "mushroom". On 31 Aug 2016, Dr Charlie Teo removed 85-90% of the tumour. Unfortunately Genique's vision was severely affected by the tumour. This blog is about her recovery and the challenges our family face daily. My Story / Video Story

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Back in Perth - Tough Times

My apologies as it’s been a while since an update.
Last few days were just a bit too much :(

In Sydney the surgery went well and Dr Charlie Teo removed 85-90% of the tumour. Genique’s sight is still not there, but could be 5 weeks before any change. Sometimes she can see for up to 10 seconds then it will be gone again.

Other issues like her hormones which is all over the place at the moment. According to neurosurgeons it is expected because of the tumour’s location.

We arrived back in Perth on 9-Sep 2016. On the 10th we visited the hospital again to make sure Genique was fine after the long flight. Overall she seemed fine but there was still the swollen tummy which was, and still is, a big concern.

We believe the swollen tummy is side effects of all the medicine she’s currently on. We discussed the matter with our family doctor who requested Genique’s medicine list and carefully went through it. Afterwards we identified many side effects in Genique and decided to propose to wean down some of the meds.

Endocrine doctors agreed (which never happens) and the only condition they had was to admit her in hospital to monitor her - too easy. It was a relieve and she was admitted yesterday (21-Sep).

In hospital doctors discovered she had a racing heartbeat and that there was a fever too.

The racing heartbeat I was aware of when I gave her a good night kiss the previous night. I remember putting my head close to her chest and thinking…what is going on in there?

The fever was something new - 39°C.
Doctors suggested it could be infection and we have to get her healthy before we can start weaning her down on meds.

Hulk Smash

Maybe it is all the crazy meds that is the cause of it all!!!!

Fever was better today and pretty normal.
Her sodium was high though. They don’t know really why…or maybe they do they just find it hard to explain it to us mere mortals :)

The plan is to keep her in hospital and she’ll be home…and I don’t know when she’ll be home :(

Hopefully soon.

In the meantime Sylvia looks after Genique and I look after our other two.

I work early mornings and then head off for the school run. Pretty much work the rest of the day until afternoon’s school run. Every night I visit Genique and Sylvia and take some dinner for my lovely.

It is tough on us all.

Hospital life is not for the fainthearted.

Thanks for all the messages and words of encouragement. We appreciate it dearly.

Kind Regards,