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
Genique went in for surgery at 10:05am. We waited 5 hours before we got a call to meet her in ICU. It is normal to observe kids at least 24 hours after a brain surgery.
Good news is doctors were able to remove 85-90% of the tumour. We will only know about her vision when she wakes up.
During the evening I took the rest of the family to visit Genique. She responded to Zanneh (sister) and ouma (granny) and she said ‘Hello’ to them. She also responded to an ice cube we put on her lips and loved the cold sensation on her tongue by licking the cube :) She hates the nappy she has on, though (LOL). Doctors had to give her meds to regulate her fluids.
Sylvia will be staying for the night to look after our little Blom (means flower).
Today was a long and emotional day for us as parents. We had to make a decision for our daughter today, will we try to preserve some vision or do we go for better quality of life?
The tumour is very close, if not pressing on the Hypothalamus in the brain.
This section of the brain responsible for the production of many of the body’s essential hormones, chemical substances that help control different cells and organs.
The hormones from the hypothalamus govern physiologic functions such as temperature regulation, thirst, hunger, sleep, mood, and the release of other hormones within the body. This area of the brain houses the pituitary gland and other glands in the body.
Although this portion of the brain is small in size, it is involved in many necessary processes of the body including behavioral, autonomic (involuntary or unconscious), and endocrine functions, such as metabolism and growth and development.
Genique is already presenting some issues in the areas of thirst, mood, behaviour and regulation of body temperature.
If we decide to leave the tumour and continue with current treatment (chemo), it will take her vision and her health. If doctors remove the tumour it can cause blindness but at least the tumour will be away from the hypothalamus.
We chose better quality of life.
So, the plan is to remove 80-90% of the tumour but by doing this she will loose total vision in her one eye :(
Doctor will leave some of the tumour to preserve some vision in the other eye.
Her surgery is scheduled for tomorrow morning at 9am Sydney time.
We have no idea how long the surgery will be and we will post updates on Facebook as soon as possible.
Through it all Genique has still a fantasitc sense of humor - watch her video asking mum to do her hair (love that kid!).
My name is Genique and I’m 5, from Perth, Western Australia.
I enjoy the outdoors and going to the park with my family. At the park, daddy and I will kick the soccer ball, and afterwards I’ll swing. I can swing on my own without help from daddy or mommy.
I’m a very active girl and will easily run circles around you :)
I give HUGE cuddles, especially to mommy and daddy.
But there’s a problem
In March 2016 I was diagnosed with a brain tumor growing from the optic nerve. It’s called a Pilocytic Astrocytoma, but I just call it my “mushroom”.
The tumor measures 43mm x 40mm X 33mm and restricts blood flow to my eyes. This caused me severe vision loss. I am no longer able to see a beautiful rainbow or kick the ball with daddy like I used to. I can no longer keep up with my friends on the playground. I lost my confidence on the monkey bars and swinging on my own. It is also harder to put on shoes and doing my shirt’s buttons. In time I will get better at this :)
The tumor is very close to other important structures in my brain and the doctors were, and still is, very concerned. Doctors advised removing the tumor immediately.
I had a six hour brain surgery and in the end, they could not remove my “mushroom” because of the risks in causing blindness :(
I started my journey with chemotherapy at the end of March 2016.
It makes me really sick, and I’m looking forward to the day I don’t need chemo anymore. I also want to grow my hair again as we all know that chemo “eats” your hair. The chemo is also causing me hearing loss and I have difficulty walking.
Everything hurts all the time :(
There is also the risk of developing cancer in other parts of my body.
Doctors advised chemo is there to keep the tumor from growing any bigger but won’t shrink it.
I’m stuck with my “mushroom” for the rest of my life.
The good news…
Mommy and daddy learned about a surgeon, Prof. Charlie Teo, in Sydney.
Prof. Charlie and his team investigated my condition and are able to help me. We are all very excited!
Unfortunately, it means another surgery but it will improve my vision and might stop the chemo.
Life without chemo means no more needles every Wednesday. My hair can grow long, and I will be able to run around with my friends again.
Before the surgery mommy and daddy have to pay a considerable amount.
You can help
The doctors need $45 000 before the surgery.
This amount sounds big, but how does one eat an elephant? Bite for bite.
If we all give something we will hit the target in no time.
This is my chance at a “normal” life and you can be a part of it.
