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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Small Vision Improvements

On Thursday, 17 November, Genique had an a few eye tests at VisAbility which had everyone, including the orthoptist, very excited.

She was put in a dark room and asked to point and touch the little flashlight close to her eyes.

With her right eye she could track and touch it.
With the left eye she missed it by a few centimeters.

This confirms what the neuro team said before, as they removed more of the tumour on her right optic nerve than the left.

Unfortunately, she is still legally blind.

We also wondered if she could see colour. Well, this was confirmed as they did a similar test with the difference they change the little flashlight’s colour.
When the light changed, she got the colour spot on. This was very exciting and we all had a few smiles :)

Another test was movement.

A white ball was rolled across a black background and she could follow it till a certain point where her peripheral vision ended.

All these tests were done in silence.
The ball did not make a sound as it rolled and the switch on the flashlight was also silent. One has to be careful that Genique listens for change instead of looking for change.

Based on all these tests we were told that her vision is highly effected by the contrast.

An example of this was when we went to the beach and it was a beautiful sunny day with trees backed by the blue sky.
She got out the car and pointed to the trees.

We know these are very small changes, but if we compare it to after surgery day they are HUGE improvements.

From total darkness, to distinguishing night and day, and now seeing colours make our family stand in awe before our Heavenly Father.

Keep them prayers and positive vibes coming :)

Home on Friday 11 November 2016

The last hospital visit only lasted two nights and she was home on Friday 11 November

The Thursday night she insisted that I bring along her school uniform as she wanted to attend school the following day…and so she did :)

Doctors put her back on cortisol and monitor closely.

She is still on cortisol, 3 tablets a day.

Change is hard on us all

One night, after our nightly prayers with the girls, Genique was very quiet.

Sylvia and I both attempted a few times as to why that is and finally she answered: “I miss the days I could see”.
(I can’t explain how much I hurt to hear her say that…I miss those days too)
We asked her to share a few memories of her seeing days and in no time Genique, myself and Sylvia were reliving a few of our camp trips.
We also reassured Genique that she is allowed to cry and we will cry with her and that she is not alone in all of this.

Through all the talk, Zanneh was now a bit quiet.

She looked at Genique and started speaking softly with misty-eyes: “You know what I miss, Genique?…I miss the days we played hide and seek”

Sylvia had tears rolling down her cheeks and I immediately kept quiet and bit down on my lip not to tear up. I couldn’t say anything.

Change is hard on us all…

Feel good story

On Friday morning, 11 November, I did the school run as Sylvia accompanied Genique at hospital.

On my way out I was surprised by a few parents, year 1 and kindy, who gathered around me.

They said they realised we had some tough times this year and they also know that it was our 10 year wedding annervirsery and they organised a little gift for us.

I was handed a card and started reading.

It was a dinner for two at five different venues to choose from. A voucher for a day at a spa, and a massage (I know Sylvia will appreciate this).
It also had Uber vouchers so that we too can at least wine and dine…but what about the kids? No worries, they organised babysitters too :)

They though of everything…even delicious cupcakes :)

We are so blessed and very proud to be part of this caring community!

All the people involved in making our 10 year annervirsery an unforgettable one - THANKS! We had a fantastic time at the C Restaurant, and it was perfect getting out alone for a change.
(Please forgive us if we did not mentioned your involvement, but feel free to comment below so that we can brag with our caring community)

Video - The day I received the gifts


Genique’s school concert (Video - Genique’s concert)

Genique did very well in remembering all her moves.
Her assistant teacher is always by her side and we are so grateful for her.
She had heaps of fun during her concert.

Genique the pretty bee :)

Merry Christmas and a prosperous new year.

Kind Regards
Beukes family.