COVID, Setbacks and Our Normal

Poof…another year is gone since our last chat :)

I hope you all are keeping safe during this COVID pandemic.

With all the uncertainty and unusual things going on in the world today, it reminded me of a time when things were uncertain for us too.

A time when a word, also starting with “C”, forced us into isolation due to treatment. Where we practiced extra hygiene and had to wear masks on public transport. We had to social distance our child for her protection. I had to reduce my work hours to care for Genique while she went through treatment, so it was financially also challenging for us. This is all-too-familiar for us, and so many others.

So yet again, we are facing a different “C” word, forcing us into isolation,
distancing us from friends and family, practice excellent hygiene and wear masks in public.

It is not the first time a word starting with “C” has turned our lives upside down. You go to sleep one way, and you wake up to a completely different world.

Our world has changed, we have changed.

As we yet again face something we have no clue about, I was thinking of ways this could be a blessing to us.

Many times we ask for more time with our children and family. We complain that our schedules are too hectic, and that we have no time to do the things that make us happy. We feel the pressure from our jobs, and we can never seem to just…STOP.

In this time of staying home, I had some time to STOP and reflect, time to think about all the things we have been through. We have been through a number of traumatic events in our lives and by the grace of God, we made it through.

When Ruan and I got married we always talked about having a family. We never knew how hard it would be for us to even have children. After a miscarriage, I had regular blood tests while I was on hormone treatment to increase our chances of having a family.

One day, like so many times before, the pathology lab contacted and informed me that my progesterone is too low for any chance of being pregnant.

I felt defeated.

The following week, I felt so tired and really sick. I was reluctant to share it with Ruan just to save us both the disappointment, so I secretly did a pregnancy test.

It was positive!

Although I was very excited, I had to fight my mind every time I had an ultrasound. I was so scared. What if there was no heart beat? This feeling never left me until the day she was born.

Then that wonderful day arrived, Zanneh was born, and we are proud parents of a beautiful little girl. This feeling was quickly crippled when doctors discovered she was born with a bean foot on the right, and she had issues with her bladder and kidneys. She also had other deformities.

Doctors advised to monitor her for frequent bladder infections and suggested exercises for her foot with the hope that over time it would correct itself.

Six months after Zanneh’s birth, we made the big move to Australia! Now anyone who has gone on this journey before will tell you it is not easy. Even though it was hard to leave our family and friends, I am glad we live in a country with a very good health system.

Zanneh had a lot of hospital visits due to her bladder issues, and so the surgeries and procedures started.

Then came November 2015, Zanneh was sent for an MRI of her abdomen and the results showed a terminal transdural lipoma with tethering of the spinal cord. Just a fancy way of saying, fatty tumour in the spine and it is constricting the spinal cord. She had pain and loss of sensation in her legs, she had a lot of falls and was on neuro pain killers for almost two years.
With the help of the most wonderful doctors and nurses, at the Children’s hospital, we are slowly correcting these issues to make sure her life is as normal as possible.

Then came 2016, the year crap got real! We say the years 2015 and 2016 were the worst years in our lives.

Now we have two children facing their own battles.

While we were preparing for Genique to go to Sydney, Zanneh had a massive surgery, and she had to get on the aeroplane to Sydney with stitches and all. While dealing with all the new issues Genique was facing, like her vision loss and declining health, we had to also help Zanneh through pain management, regular check-ups and emergency visits.

Then the next big surgery came for Zanneh, December 2018, when they said we had to remove the tumour in her spine. I remember how scared I was. There was Genique before the surgery, and Genique after the surgery. What if Zanneh goes in for surgery and comes out paralysed?

She had surgery on the 21st of December 2018 and her spinal cord was successfully released. She was such a star patient and was sent home after four days.

Now, while all of this was going on, our son Xayden presented with headaches and vomiting. We’ve seen these symptoms in Genique before, so naturally we were very anxious. After being at the emergency department, and being told I was just paranoid, we took him to our GP who requested an MRI.

The results showed he had a malformation of veins in his brain. THANK GOODNESS, NO TUMOUR. The rush of blood causes him headaches, and then he will vomit because of the pain. Luckily, this does not require any immediate attention as it is quite common, we just need to keep an eye on him.

After looking back at all these traumatic events, which significantly changed our lives and influenced the way we think about everyday life, I realized that no matter what we face, big or small, we all can make it.

If you can take it, you can make it (from the movie Unbroken)

We are stronger today.

This life is our new normal…

Our story in a short video.

Decisions and Doctors Appointments

Before the COVID restrictions Genqiue had a series of appointments.
Her MRI results showed the residual tumour is stable, and some of the fluids seem to be less visible.
The doctors were concerned about her blood insulin levels. Long term steroid use can increase your blood insulin levels.

Genique has been on steroids for 3 and a half years now. Long term steroid use also weaken your body’s response to infection, so should Genique be infected with this COVID-19 virus, there could be adverse outcomes for her.

She has been on the same emergency action plan since starting the steroids back in 2016. Then, out of the blue we receive a letter in the mail with a new emergency plan to triple her normal dose, four times a day.
It got us a bit worried, so we sought our GP’s advice.

As we suspected, it was not good. Genique is immunocompromised due to the steroid use. The only way to keep her completely safe is to keep her out of harms way.

What does this mean for us as a family?

During lockdown, it meant: No more going to school for one thing, no visits from family and friends, no more daycare kids coming in and out of the house. One person to leave the house for essentials and that is it! Even Xayden had his birthday in isolation.

Just like the world is fighting this virus, we are fighting too.

Gratitude

I hear so many people complaining about the isolation, kids driving them crazy, husbands driving their wives crazy. I hear people saying they can’t wait for this to be over.

But what if we stop counting the days till this is all over, and make the days count!

I am so grateful for the time we got to spend home together as a family. I feel this time in isolation have healed some parts of our family and our hearts. Even the kids seem to get along better and playing together.

Here are some things I will never again take for granted: Birthday celebrations, family gatherings, Friday nights with friends, the crowded beach, coffee with a friend, teachers, my loving husband, my beautiful children, and life itself.

What are you grateful for?

Kind Regards
Sylvia & Ruan

Emotional rollercoaster

I know what you are thinking: Why did you take so long to write another update?

Well…we were trapped in the Beukes-Bunch’s circle of life: alarm, wake up, feed kids, school drop off, get coffee, go to work, school pickup, kids homework, prepare dinner, kiss husband (if time, otherwise high five), kids bath time, dinner time, attending to the never-ending laundry, do dishes, pack kids’ lunch, quick shower, kiss husband (if well behaved), sleep…repeat every weekday :)

Of course we are all busy, and to be honest, I think I was trying to avoid it until I had something positive to write.

We write to keep you up to date with how things are going with Genique, but so many times we overlook what is really going on behind the scenes.
When we share her progress, it’s mostly about the good and positive.
This gives us the feeling of accomplishment.

But there comes a point, where you just have to call it as it is: it sucks!

What the world sees, and what we experience every single day, is just too different.

The world sees an eight-year-old girl with a little more weight than usual.
The world sees this little giant, standing head above shoulders overlooking her peers.
The world sees someone struggling to run and play like the other kids.
The world might stare and think: “How can her parents allow her to get so fat?” or “What are they feeding her?”.
The world is also blissfully unaware that this little girl has been on steroids for the past three years of her life.

This little girl who used to run and climb and play, just like the other kids.
This little girl who used to have a lot of friends.
This little girl who just wants to be normal and accepted, just like before.

The world sees a smile on her face almost every single day.
The world says she is doing so well and she is such an inspiration to everyone.
The world sees her and thinks: “She is always so happy”.

The world is unaware of the streams of tears flowing from those beautiful brown eyes.
The world does not see the loss she deals with every single day.
Every day she opens her eyes, is yet another one where she is reminded that she is blind.

Luckily the world does not have to answer these questions:
“Mommy, why am I the one who had to be sick?”
“Daddy, why is God not healing my eyes?”
“Why do we pray, it is not like it is helping?”

The world does not see the countless hospital appointments and needle pricks she has to go through.
The world does not see the sadness when she comes home and hesitantly explains she had no friends to play with today.
The world sees a girl struggling in school, her peers saying she is not that smart.
The world does not see she has to work extra hard in school.

She is taken out of her class to learn braille just so that she can do her school work.
She then has to catch up on all the work she has missed while the other kids get to do fun things.
The world sees her courageously running in a race where everyone is cheering her to the finish line.
What the world does not see are the sweat and tears that went into that run!
The world does not feel the pain in her legs with every stride…over…and over…again.
The leg pain is the chemo’s scars she has to live with for the rest of her life.

Oh, and let there be one day without a smile on that beautiful face!
“Where has your smile gone?”
“Life is not that serious, ‘cmon, cheer up!”
“It can not be all that bad?!”

Well, today I want to get it out of my system: It is that bad :(

It sucks!

We hate every single minute of it and the worst part is we can’t do anything about it!

How can you inspire so many people by feeling like a failure all the time?
It feels like people are obligated to be nice, just because she’s blind.
Only a few really invest the time to get to know her…really know her.
She is actually a pretty funny kid with a huge heart for others and lots of love to give.

Thanks to those who take the time to make her day a little more special and a little less lonely.
It also makes her parents smile :)

Medical update

August 31st also marked 3 years since her surgery with Dr. Charlie Teo in Sydney. Even before the surgery, Genique was already legally blind but had some vision. The surgery did save her life but unfortunately, she was left blind. Months after the surgery a functional vision test revealed that she had no light perception and could not see any movement.

We recently had another functional vision test done through Visability and Genique can now pick up movement and light with her right eye. She was also able to identify some shapes if shown in high contrast (white paper with black lines).

Just this news is worth celebrating :)

She also had another sleep study to trail her new machine. It did not go as well as we expected as she pulled off all the wires and the oxygen mask during her sleep. She also had difficulty breathing every time they had to re-assemble/re-connect everything again, she got anxious and started crying. Not a very pleasant experience, but she will be getting this new machine in the next couple of weeks so we will see how she go.

As you can see it was a hard year for us with many ups and downs.
We hope things will start to improve with all the changes ahead.

Thanks to all the people who still uplift us in prayer, and if prayer is not your thing, please keep them positive vibes coming!

We love them both equally :)

Kind Regards
Sylvia & Ruan.

PS: MRI results to follow so we will not wait another year for the next post!

PPS: Written with a kind and loving heart.

A few months ago I started a new, and very exciting, job.

One meets many people who are always eager to get to know you better.

This, of course, means you have to be prepared to answer many questions:

“How long are you in Australia?”
“Where are you originally from?”
“How many kids do you have?”

I don’t mind these questions, but knowing me, I sometimes share more than I should :)

So, I made an extra effort this time not to share too much of the “bad” hand life has dealt our family.

Despite my efforts, there were some questions which could not be avoided:

“Was your daughter born blind?”
“Why were you at the hospital, is your daughter okay?”

When these questions surfaced, I would kindly mention it could take up to 15 minutes, and then shared Genique’s incredible journey.

After I’ve shared our story with a few folks, they encouraged me to share it with a greater audience.

I agreed and signed up for the End-of-Month-Talks.

This gave me the opportunity, between 5-10 minutes, to share our story.
It was my first time sharing it with a bigger audience, and it went really well.

We all have a story to tell…what is yours?

Be brave and share your story, no matter how big or small, and you would be amazed by the number of people you can help.

Kind Regards
Ruan.

Pay it forward presentation:

Video tribute in presentation:

(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.

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).

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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Several months have passed since our last chat :)

During this time, a few things happened.

For the past year we have been reminding doctors of Genique’s irregular sleeping patterns.

At first doctors said it is due to her vision loss, and that she can’t differentiate between light and darkness. They also said that her brain might not produce enough Melatonin.

She was prescribed extra Melatonin and we tried it for a few months. She has no problem falling asleep, staying asleep is the issue.

We then thought it might be her tonsils, as we know they are bigger than normal. The oncology team then referred us to the sleep and respiratory department.

November 2017 Genique went for a sleep study.

The test results showed she suffers from Central Sleep Apnea.

Central sleep apnea is when your breathing repeatedly stops and starts during sleep. It occurs because the brain doesn’t send proper signals to your muscles that control your breathing. The lack of oxygen in your blood wakes you.

Genique wakes 260 times per night, 47 times an hour.

No wonder she is tired…all the time.

We went back for a second sleep study to determine if oxygen supplement would work for her.

The results showed Genique requires 500ml of oxygen every night and she only woke 37 times, compared to 260 times before.

Luckily we don’t need any oxygen cylinders, instead we use this nifty little machine that produces the oxygen.

Although there are a lot going on, we think overall she is doing great as we are mostly visiting doctors for regular checkups.

Last year’s MRI in September showed improvements which got us all excited all over again.

We compared the previous MRI to the current one and we could see a change in the pituitary gland. This is the part of the brain that controls the adrenal glands (cortisol levels) and the thyroid. Previously this anterior pituitary bright spot, was not bright at all. Now, the bright spot can be seen on the MRI.

Slowly but surely something is happening…Patience is so HARD :)

After we pointed out the differences to endocrine, they too were very excited and booked an appointment for another set of tests. These tests will specifically be around the steroid producing part of the brain.

On a previous occasion these tests indicated no hormones were produced in that part of the brain.

Endocrine then explained that a repeat test is unnecessary unless there is a clear difference in the anatomy, which in Genique’s case shows positive change, and they are very curious to measure the change.

Unfortunately the test results showed Genique still requires steroids :(
Her body is still not producing enough of the stress hormone.

During the test Genique was doing really well without the steroids. This has doctors confused as the results show Genique is supposed to show worse symptoms and should feel horrible most of the time. She is doing just fine on her current steroids dosage.

There is always something to be grateful for :)

We are positive that another test will show itself in the near future.

At this stage we will continue to do life as a family and enjoy every moment together.

Another recent highlight was a surprise phone call from Dr Charlie Teo!

He just returned from holiday and was checking up on all his patients. It was wonderful to hear from him and he said he’ll keep in touch.

Dr Teo: “Send my love to your family”.

He will * always * have a special place in our hearts!

Thanks for all the support and messages we still receive.
It makes life easier knowing we have friends with us on this journey.

Till next time…

Kind Regards
Ruan and Sylvia