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It’s that time again.

Another follow up appointment after Genique’s quarterly MRI. Driving the same road and sitting in the waiting room takes me back to 2016.

Possibly the worst year ever!

As Genique and I wait, a few memories surfaced…

How we started our day very early, drove to hospital, parked the car, straight to the pathology lab…then down to ward 3B for chemo. Next was height and weight measurements, then temperature, and finally blood pressure.

Every Wednesday…the same.

Just a few months ago, Genique, you were the skinny child with the pale looking skin and no hair.

But, looking at you today, I am so grateful that we are not caught up in groundhog Wednesday anymore!

Mummy and daddy are so proud of you and very happy with the progress you have made thus far.

You know your braille alphabet. Started reading braille books. Your ability and willingness to learn had people stunned at how quickly you completed your syllabus.

You never cease to amaze us, Blom.

Thanks to Paige, your wonderful occupational therapist, you have your own brailler now, and oh how you love taking it everywhere showing family and friends your new acquired skill.

​Mummy and daddy look at you and think: You are our daughter who can achieve anything when you set your mind to it! You ride your new bike (trike) with such style and confidence.

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I noticed how people look at you and treat you as if you can SEE because you look so normal to them, but little do they know the battle you are fighting.

Tick tock, tick tock…still waiting.

Finally, our turn.

The doctor shares the MRI results with little enthusiasm, saying the tumour is contained.

I keep telling myself that things must be getting better because over the past few weeks you have been seeing more and more: things like the sunrise in the morning and its beautiful orange pinky colour, and the light poles and trees next to the road. When we play your eyes are following us around the room. It must be a good sign, right?

I’m a bit disappointed with “contained”, do I expect too much?

As I read the the report on the doctor’s screen, my heart started pounding faster and faster.

And then, I can not help but smile :)

The MRI showed IMPROVEMENT in some areas!

The bulk of the tumour decreased in size from 12 mm to 7 mm.

Some parts even show reduced enhancement of the contrast. This means the tumour has less blood supply than before.

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On the inside I’m ecstatic!!!

The doctor is still talking…has someone pressed the mute button? I don’t hear a thing.

All I’m focused on is how proud I am of you, Blom.

I could not wait to hug and tell you the good news in mummy’s words.

At that moment my eyes warmed up with tears, not sad ones, but ones of pure joy and gratefulness.

After I explained the results to Genique, she could not wait to tell the world the good news.

On our way back to the car, Genique made it very clear that she does not like this hospital and hopefully one day her mushroom will disappear so that we don’t have to do this anymore.

This is my prayer too, Genique, but until then we will continue with what we are doing and we will keep praying because there is surely something happening!

Love you lots,
Mummy.

PS: Genique’s progress video.

​With the kids back at school and me working extra shifts, things have not been easy!

I’m so glad the kids are back as it became impossible to keep them occupied these last few weeks.

A thousand questions…

The first day of school, and I’m working that morning. I left the kids in dads capable hands. He will take them to school for their first day.

In a way I feel sad as I used to be the one who would take them to school and share this exciting day! The girls were super excited and could not wait. New year, new beginnings, new friendships.

I can’t help but have these nervous feelings as I think of the year ahead.

Will Genique be able to cope with the workload?
Will she fall behind because she can’t keep up with the other kids?
This is the year they start reading!
How will she master reading if she can’t see?

Will she be okay…?

We all want our kids to be happy and do well at school.

Again my mind race off and I get more anxious.

How will she be able to have a normal life without any vision?
Will she be able to drive a car?
How will she meet her prince, and marry, and have kids.
(Yes, a bit extreme, but the unknown of the future scares me!)

Let’s see what the year has in store for us.
What ever it is, our family is ready to take it on!

First day off school - Dad vs Mum

The morning started by me getting the girls’ clothes ready before I head off to work. The kids are dressed and ready for school. I asked Ruan to take a few pictures so that I could also be a part of it.

Now I can relax and look forward to pick-up time.
I can’t wait to hear how good their first day was.

Pick-up time I noticed the photo display on the classroom wall - My first day in Pre-Primary. I could not miss Genique’s picture as it’s one of the first up on display.

As I’m looking at her picture, my first thought was “What happened to your hair?”

I made the decision there and then to never leave the girls’ hair in daddy’s “capable” hands :).

Daddy’s handy work on the left vs mummy’s on the right.

You decide who’s the winner :)

Fighting spirit

It is now week four of school and the visiting teacher from Sensory Education is very pleased with Genique.

She’s starting with braille this year and will still do everything the rest of the class is doing. When they learn letters and numbers, she will be learning the braille equivalent.

This is her current brailler.

We are looking at getting her a smart brailler. One which is modern and tech savvy.

We are still so grateful to everyone who got behind Genique before her surgery as it make decisions, like getting a new brailler, so much easier.
Anything making her life easier, we will pursue.

​She is absolutely loving and enjoying school!

She plays in the sand pit, something she hasn’t done since the surgery.
She goes on the swing and swing all by herself, also something she hasn’t done since the surgery.
She even went for a few bike rides!
She is interacting more and more and it makes me so happy.

Her confidence is growing daily.

Last week I was told that she is a very bright girl.
The sensory school provided her with pre braille work that was supposed to last her the whole term.
Genique finished it in two weeks!

Then, to top it all, she had her first ballet lesson two weeks ago and she loved it! She decided that this is what she wanted to do and I made work of it. I found a place that was willing to teach her despite her vision loss.

We live in a wonderful community with amazing people with the most loving hearts, and I stand in awe.

Thanks Perth Dance Centre for making Genique’s dream a reality.

Why was I worried about you in the first place, Blom?

Genique, I could not be more proud to be your mum.
You have so much love for life and you really and truely live life to the full, despite the obstacles and challenges!
(Something I see and learn from you every day).

There is nothing I would rather see than your smile.
Nothing I would rather hear than your laughter.
You have a fighting spirit which I admire.
No matter what life throws at you, you just get back up again.
You can do anything you put your mind to.

No limits, no regrets!

From your biggest fan who loves you unconditionally
Mummy 💋

As I was reflecting on the year we had as a family and everything we have been through, I can honestly say that this was the toughest and the most amazing year.

The toughest because as of March 2016 we became part of childhood cancer stats!

Our lives changed forever!

I don’t think you ever get over it but rather you learn how to work through it. Some things never get better, but we do. We got stronger. We have learnt how to live with the situation as messy and as ugly as it may be. We fixed what we could and learnt to accept the things we can’t.

This year has been amazing because we were so blessed with generous people with amazing hearts who went out of their way to make this journey a little bit easier. Every prayer, text message, positive vibe, meal and donation, could not have been possible without you!

To all of you: “Thank you”, from the bottom of our hearts.

My wish for everyone is that 2017 bring you an abundance of amazing opportunities, beautiful memories and joyful experiences.

May your positive actions and attitudes inspire others.

May you be brave enough to take on and overcome any challenges, and always keep your integrity even when the choices are hard.

May you have excellent health.

May your hearts be filled with love and have peace, even in the most turbulent times.

May you have a reason to smile every day, and a shoulder to cry on when you need it.

Give freely and forgive willingly, laugh easily (because life is too short), and may you all live well enough to be grateful for every day!

HAPPY NEW YEAR! 😘

Kind Regards
Sylvia and the Beukes bunch :)

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.

Merry Christmas and a prosperous new year.

Kind Regards
Beukes family.

On Monday 7 November, Genique went for blood tests in preparation for her port removal surgery the next day.
The sad news is her blood tests showed low levels of cortisol. Doctors didn’t feel comfortable putting her through surgery and postponed it.

(The port is a small medical appliance that is surgically installed beneath the skin. A catheter connects the port to a vein. Port was when she had chemo treatment)

Yesterday Genique went for a stress test to further investigate her cortisol levels.

Before the test, a blood sample is taken. Genique is then injected with something to stimulate the brain (adrenal gland) to produce a hormone called cortisol.

After a few minutes another blood sample is taken…and another one.
If normal or above normal levels of cortisol is found in her blood, it is good. If the levels are still low, it is an indication that the brain does not produce the cortisol.

Today, the blood results indicated critically low cortisol levels :(

Genique was admitted to hospital and will start with small dosages of cortisol. She will be monitored for the rest of the week and hopefully we will have her and Sylvia home by Friday.

The neurosurgeons did say it could take months for functionality to return.
The plan is to repeat the stress test every three months.
But for now, doctors will treat the current situation.

Keep them prayers and positive vibes coming.

Kind Regards
Ruan and Sylvia.