Dialog Box

Children's Tumour Foundation of Australia

Jordan's Story

New Years Eve, 2013. I was 13 years old and mucking around with my friends at home while mum and dad were having a New Years Eve party. I fell, felt my left knee twist to the left and cried in pain. I managed to straighten up my leg and "pop" my knee back in. I told mum who insisted this could not happen. However, it did and my knee was very swollen for a few days. 

As a dancer, my knee continued to dislocate a number of times after this. I went to a physio for about 15 months trying to build up enough muscle to help hold the patella in place - this did not work. My GP eventually sent me to a knee specialist after having an MRI done. He looked at me and referred me to a colleague for surgery. But he never looked at my scan! The next day he called my mother and very humbly apologized. 

Upon looking at the MRI, he had found a neurofibroma and then began my NF1 journey.

Since I was born I've had many café-au-lait spots, cute birthmarks all over my body. I had a discoloration under my arms, and suffered migraines as a 5 year old.

My parents took me to the doctors but it was passed off as, "she needs to have her eyes checked, shes just a clumsy kid, she has difficulty learning, cute birthmarks!"

No one in my family has NF so it was never even discussed - we, like most other people, had no idea NF even existed.

I had knee surgery in November 2015 when the school year finished. They could repair the damage to my knee but not remove the fibroma - it was, and still is, wrapped around my knee. I continued with physio, struggling at school and even though now diagnosed with NF1, not really seeing a specialist or anyone to manage my symptoms and conditions."

Eventually halfway through 2017, I found a Facebook support group for NF. While they were somewhat helpful, I found it a bit overwhelming, but I did talk to some nice people who advised me to seek medical help and a neurologist. 

After leaving school in 2017, I started at TAFE, completing a Diploma of Travel and Tourism. 

In early 2018, I went to my normal doctors clinic, however I saw a new, young doctor, who was still training to become a GP. She was amazing and listened to my story and wondered how I had managed to go unsupported for so long. She sent me to see a Neurologist, Dr Walsh. I went to see him in February 2018 and he sent me for a number of tests.

I went to see a neuropsychologist, made an appointment for the Brisbane Eye Clinic, an appointment to see the Genetic Clinic at the Royal Brisbane Hospital (who don’t like the term mutant being used. My family are all sci-fi and X-Men fans so its not a bad term in our house!) and had a full body MRI scan.

My parents have always been supportive, and we are okay financially, but the costs of these tests were quite large. $1600 for the neuropsychologist report, we went public for the genetic test, and about $1700 worth of MRI scans.

In between having my MRI’s and seeing the neuropsychologist and then going back to see Dr Walsh, I had a car accident in April 2018. 

My car was hit from behind by a semi-trailer and I was spun around and knocked unconscious. My seat collapsed and I was bleeding from my head.

I was taken to Logan Hospital and they did a CT scan on my head. It came back with some strange results that they couldn’t work out what it was, as it didn’t seem to be from the accident, but I told them that I had just had an MRI on my head and was going to see my specialist the week after so they said to mention it to him. I also have tachycardia, so they panicked at first with my heart beating 120 beats per minute, but that's just my normal!

My mum and I went to see Dr Hall in April 2018 after having the test done. He went through the results from the neuropsychologist which showed I have major learning difficulties. There were no surprises there, but I was happy to learn I scored really well in alternative thinking areas! 

Then he started with, “Now, the MRI, well...umm... okay... we have found a small but nasty little tumor in the centre of your brain that is blocking the ventricles that send water around your brain and..... and...”. By this time i looked over at my mum who was holding my hand tighter and tighter and had an uneasy smile on her face – not a happy smile but i think a smile to stop her from crying and scaring me!"

Dr Walsh is a wonderful, supportive man who I am pleased to be able to have support me through my NF journey. He sent me to another amazing doctor, Dr Hall, who we saw a few weeks later.

It was a long couple of weeks, thinking what does this all mean – it was good in one way to have a “reason” why I had the headaches, why I fell over so easily, why the learning problems. But now what?!

Mum and I went to see Dr Hall a few weeks later and he gave us more information and showed us the nasty little tumour causing so much difficultly for me. I could see the level of water pressing on my skull, causing my head to change shape over the years, causing all these problems. Its called hydrocephalus. 

The only solution was surgery to put a VP shunt into my head to shunt the water away from my brain and into my stomach area. We ran through the options and came up with a plan – but we would still talk as a family about the options. We left Dr Halls office, and both of us stopped, hugged and cried.

After some family discussions and working out TAFE timetables, we booked in my surgery for June 2018, TAFE break, so as not to fall too much behind. 

I was beyond nervous and scared. Mum and dad were there, being brave and positive for me. They prepped me for surgery and took me in – last time mum could wait with me, but being 17 now, I was treated as an adult and therefore on my own, scared on a hospital trolley, waiting for surgery, alone. That was my last memory for the next few days."

Mum and dad had bought me a diary to get me to write down my thoughts and feelings over this time, knowing how important it would be to me. But the next five days were a blur to me, but mum wrote in the diary the thoughts and feelings, her observations of what was happening. Again, as i was 17 i was in the adult ward and mum had to beg to be able to stay with me.

I spent the first night in intensive care, and mum and dad came to see me when i got out of surgery. I spent a very long time in recovery and mum and dad were very worried, tired, exhausted and emotional. They were allowed to see me in intensive care for a few minutes before going home and coming back the next day. I don’t remember anything of that time except  being sick... a lot!

The next four nights i was in the ward, mostly sleeping, my head partly shaved and bandaged. I slept and slept. The doctor told me that I had to be able to walk around the ward before I could go home but every time I got out of bed or even just sat up,I was sick, dizzy, and unable to stand. The pressure in my head had changed so much that I was not used to it. 

The doctors actually told me when they drilled into my head, the water actually spurted out, the pressure was so great.

By Day 4, I managed to walk about 20 metres, but I wanted to go home so the next day pushed myself to walk around the ward. This began a long recovery and learning to walk around and do things with a much lighter head.

I continue to see both Dr Walsh and Dr Hall. Dr Walsh looks after my NF – eye appointments, knee scans, tumour scans, and Dr Hall monitors the tumour in my brain. I have MRI’s every year and almost not a week goes by that i don’t find another lump – some are ok, they don’t hurt too much, but others send painful shocks over my body, from  my head to my feet, i have lost count of how many there are.   

This year I found a lump in my breast, I’ve had it scanned and now can add another specialist to my list – a breast surgeon. She is amazing and makes me feel comfortable with her, and i am waiting to have another MRI, this time my left breast. Biopsy? Future scans? Unsure at this stage but I have an amazing supportive family and the support of the Children’s Tumour Foundation through which I have made friends, people who understand what I am going through, like Courtney. I love the support, knowing I am not alone, there are people who truly understand what i am going though."