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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Sydney - Going Home (Day 6 in ICU)

I arrived 8am to change shift with Sylvia. She was with Genique previous night. I was home with the other two kids to spend some quality time with them and also had a good night’s rest.

The rest of the day I waited with Genqiue until the hospital politics were sorted out to determine if she is going to be admitted to the children hospital’s normal ward or be admitted in the private hospital next door.

Finally doctors agreed she can go home because we live 5 minutes away from hospital.

Yeah, the rest of the family was so happy to see our Blom home at 5pm :)

Back With Family

Later that night we saw her tummy was still swollen. We called the endocrinologist and they said it might be gas and we will investigate it the next day when we have a follow-up appointment.

At the time she had normal urine and bowel movement.

Kind Regards,

Sydney - Happy Fathers Day (Day 5 in ICU)

Genique is still in ICU but doctors has the magic numbers for the meds to control the DI (Diabetes insipidus) - WIN! It also means that the darn catheter can be removed - DOUBLE WIN! Only thing left is the IV in the neck.

Without the catheter it is so much easier to move around. We took her to the hospital’s fairy garden. She chilled out and had some biltong (jerky) with us.

Sister love

I did notice that her tummy was swollen and she complained about back pain.

This Fathers Day is officially the worst Fathers Day I ever had!

After I wrote that line I paused…I’m lying. We could have been so much worse off than now. So, let me correct it.

This was an unique Fathers Day and one I will always remember as the one where Genique beat the crap out of her mushroom (LOL). There has to be some positivity!

Here is another feel good story.

Early this morning, just before 4am, a nurses asked me if I quickly want grab a drink as I was sitting since midnight. Genique was also awake and on my return I was welcomed with a Happy Fathers Day card - sneaky nurse :).


I praised Genique for the beautiful card and guide her fingers on all the flower shapes and butterflies. She enjoyed my surprise more than I did.


Last bit of good news…the IV line from her neck was also removed just before 21:00. Genique didn’t do well during this ordeal as it reminds her of chemo and the pain associated with it.

Finally, Genique is free from all medical equipment connected to her - BIGGEST WIN!!!

I think it is going to be the first night she’ll sleep and really getting some rest. Before, she was disturbed every 2-3 hours for blood tests, meds and other things.

I think that a promise today of her moving out could just be true ;)

In summary, I think today was a good day!

Kind Regards,

Sydney - Finding Correct Dosage for DI (Day 4 in ICU)

Genique is still in ICU trying to get the correct dosage for the DI. If only she can get rid of the darn catheter. Unfortunately they need it for the DI tests. Her temperature has come down and is regularly 37°C.

Icy Poles Helps for Temperature

Doctor asked again about her vision and if we detected any changes. He then checked the pupils with little flash light.

He explained again that there is reaction on the pupils and that is a good indication that they had not caused any damage to the nerve as the circuit between nerve and brain is intact on both eyes. He explained again that we should be patient with her vision.

Patience - It is so hard!

O yes, as always, there is a promise that she might be out of ICU tomorrow.

Kind Regards,

Sydney - Fighting DI (Day 3 in ICU)

Genique is still in ICU trying to get the correct dosage for the DI.

She received a big unicorn balloon from her generous neighbour. We never got a chance to thank them as they were only in ICU for a few hours. Hopefully they’ll read this post - “we thank you from the bottom of our hearts”.

Unicorn Balloon

There is still no change in her vision :(

Doctors said that they were happy with the surgery and that they looked at the nerves and all were healthy. The nerves were stretch because of the size of the tumour but they could not detect any other damage to it. According to them, the swelling of the brain must settle down and can easily be 4-5 weeks. Hopefully that will restore her vision too.

She asks every so often to switch on the lights, and every time I get this feeling of something squeesing my heart and I find it hard to breath.
A few silent tears usually fixes it.

“Daddy doesn’t have all the answers, Blom. It is day time now. Your brain hurts and the swelling must go down before you can see. Don’t be to hard on yourself…you must rest now” followed by a kiss on her forehead.

Please, keep them prayers coming.

Kind Regards,

PS: She might be out of ICU tomorrow.

Sydney - Spring Day (Day 2 in ICU)

It is Spring day and Genique is still in ICU and fighting DI :(

There are meds available to control it, it’s a matter of determining the dosage.

She also has a temperature of 38°C consistently.

Diabetes insipidus (DI) is a result of damage to the pituitary gland, a small gland at the base of the brain which stores and releases a hormone called ADH (antidiuretic hormone), also known as vasopressin. This hormone normally causes the kidney to control the amount of water released as urine from the body. When the pituitary is damaged, the kidneys lose too much water (increased urination), which then leads to increased thirst.

Sylvia and I tag team to looking after Genique. My shift is usually between 18:00 and midnight, this gives her good uninterrupted sleep for 5-6 hours. When she’s back, it is my turn to sleep til 5am. After my nap we both wait for the doctor who visits around 7:00am. Between 8 and 10am it is quiet time and we are not allowed because of patient confidentiality. This is when I go home and spend some time with our other two. Sylvia waits in the friendship room and sometimes takes another nap.

Life in the hospital SUCKS!!! :)