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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New Friend, Seasons and Living Life to Its Fullest

(Progress video)

A new family member

Two years ago we investigated the possibility of getting a guide dog for Genique. The recommendation was to get a companion dog.

Companion dogs are dogs which completed the regular guide dog training but for various reasons could not be used to fulfill their duties. These reasons could be medical or behavioural.

We applied for a doggy and was placed on a waiting list. Genique was very excited but month after month, time was slowly eating at her excitement.

She really wanted a puppy and started negotiations to get one for her birthday :)

In February we promised her a puppy, but her birthday was still months away. Then, at last, the long awaited call. The WA guide dog association informed us that there is a doggy looking for a home.

Genique was over the moon and could not wait.

On the first visit, Genique fell in love with Cleo, a black Labrador. Cleo is a companion dog because she’s a bit anxious, a characteristic which relieved her from her duties but made her perfect for our home :)

It was quit a process before we owned Cleo but all worth it. We can now proudly say that Cleo is part of our family and brightens Genique’s world daily.

Genique loves brushing and cuddling Cleo.

There is also a coincidental bond between Genique and Cleo. Cleo’s birthday is one day after Genique’s first brain surgery. This was a pleasant surprise as now we can focus on new memories instead of old sad ones.

Aussie, Aussie, Aussie

In March, Genique was honoured with the Aussie of the Month prestigious award.

She certainly inspire our little family and everyday we learn from her.

Aussie of the Month is a primary school recognition program which has been in operation for over twenty years. The program recognises personal endeavour, achievement and contribution to the community and reflects some of the values we share, such as fair go, mateship, respect and inclusion.

Aussie of the Month is delivered by the same network that presents the Australian of the Year Awards nationally. The Australian of the Year Awards profile leading citizens who are role models for us all, who inspire us through their achievements and community participation, and challenge us to make our own contribution to the community.

Aussie of the Month reflects similar values, and aims to encourage an appreciation of the diversity and depth of personal contribution and achievement possible within your school, and bring about increased concern and consideration for all members of the school community.

Proud Aussie of the month

Tonsils are gone

In July Genique’s tonsils were removed.

Two weeks prior to the surgery, the anaesthetist contacted us as he heard Genique was a complicated case given the sleep apnea and her struggle to recover after anaesthetics. This was very comforting knowing that this particular doctor will take extra care of Genique.

On surgery day we met the anaesthetist and we had a déjà vu moment. It was the same doctor who assisted with Genique’s first brain surgery.

He put Genique to sleep without any tears…a big WIN in our eyes as she hates needles.

The surgery went well and hospital staff went above and beyond to make her one night stay as comfortable as possible.

Now that the tonsils are removed we will repeat the sleep study in a few months time. Hopefully her breathing would be better. It could potentially mean Genique does not require extra oxygen during the night.

Time will tell…

A season for everything

Paige is Genique’s Occupational Therapist from VisAbility.

She started the journey with Genique before they’ve met.

Their relationship began in August 2016 when Paige attended a fundraiser night of this little girl with a brain tumour. She had a great time with friends and never thought that one day she will be helping this very same girl on her road to recovery.

She was there from the very beginning.

Life has seasons and unfortunately Paige’s season has come to an end :(

Fortunately she’s still at VisAbility, so Genique is still able to chat and catch up :)

Thank you Paige for taking such good care of our little girl. You have such a loving heart and there’s always room for one more person. Thanks for allowing Genique a spot in your heart.

Your patience is incredible, even when Genique was frustrated at times and not in the mood for activities, you would calmly encourage her and in no time she would be smiling again.

Genique was always looking forward to your visits and you will be missed.

Our family really appreciated you and we know you are going to bless all the other families on their road to recovery (hugs and kisses).

Paige receiving a handmade gift from Genique

Genique is looking forward to hang out with her new Occupational Therapist…let the fun continue :)

Some dark moments

“How’s Genique going…?” (a.k.a: “How’s Genique doing…?”)

A question asked so many times before.

Well, from a doctor’s point of view one would say she is doing great as she is manageable.

From a parent’s point view, we want more.

Her overall health is good. We only visit doctors for regular check-ups and for the quarterly MRI, nothing serious.

However, she is still on steroids and other medicine which we know in the long run would be harmful.

It feels as soon as your child is labeled “manageable”, doctors stop further investigations. There is no effort to see if there is a way to get her off the steroids, or find other alternatives.

We’ve learned that no one cares and as a parent you need to stand up for your child. We are currently investigating other ways to help Genique. This is a journey in itself and hopefully by next year we would be able to report back some good news…who knows?

Psychologically she is mostly happy.

Unfortunately there are still some “dark” times and usually they are triggered by some event which reminds her how things were before.

Just the other day there was a song playing on the radio and Genique asked to skip it.

I muted the radio and asked her why we need to skip.

Her reply: “It reminds me when I could see, daddy”.

For the next two-to-three minutes the silence was ringing in our ears…

I told Genique that it is okay to feel sad, and she could even cry if she felt like it. I told her that I too feel sad some days, and when we have those moments we should talk about it, as a family.

It’s better to share these memories, good or bad.

For the next few minutes we talked about all the things that pop into that interesting mind of her’s: running, skipping, playing with Zanneh, just to name a few.

I then explained how good it is to get it out and not to keep it in, because keeping these things in can make you feel sad, all the time.

We both agreed that we are not sad all the time and that we are ready for the next day’s battles.

Circumstance won’t hold you back

Genique’s school is very supportive in everything she does.

She participated in the school’s Edudance.

Edudance provides kids the opportunity to be part of a fun and energetic dance program within their own school community.

We were so proud seeing her dancing on stage with friends, yet another way how she is raising above her circumstances.

The next challenge she faced head on was the school’s cross country race (disclaimer - we did not tell her to run, all her own choice).

This was challenging as the past chemo treatment caused damaged to her left foot.

Overall the race went well but the last 150m towards the finish was a memorable moment.

As she was going down the last stretch the rest of the school kids, not just her class the older kids too, lined up and started shouting: “Go Ge-ni-que, whoa! Go Ge-ni-que, whoa! Go Ge-ni-que, whoa!”.

Genique looked at her teacher, who ran the whole race with her, and shouted ecstatically: “That’s my name…they are shouting for me!”.

Suddenly she had new fire and completed the race with a smile and red rosy cheeks :)

We are blessed to be part of a caring school community. Genique loves her school.

Genique also has been swimming since March. She enjoys it heaps, and we are pleased with her progress. Kudos to the staff at Sea Dragons for accepting this challenge, you guys come up with fun ways to teach her the techniques.

Keep up the good work!

Genique is overall happy and living life to its fullest.

Thanks again to all who are still walking with us on this journey, we appreciate everyone’s interest.

Till next time…

Kind Regards
Ruan and Sylvia

PS: Progress recap video.

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