Suzzanah – Tasmania Race Director
Rewind to 2010 aged 18 months…
I took Macy to see the GP because for the first year or so of her life she suffered badly with ear infections. She wasn’t irritated by them as such, she was a very happy baby but it was obvious something was going on because she had constant fevers.
At this appointment I also mentioned that she didn’t seem at all interested in walking. She had been crawling a little, but she had a big sister who was all too happy to bring her toys to her so it wasn’t an issue for her.
The GP seemed to be alarmed by this & sent us to see a Paediatrician that afternoon.
The Paed examined her closely & noticed some spots on her that I had always thought were birthmarks. He counted them & she had 12. They were called Cafe au lait Macules.
He diagnosed her with Neurofibromas Type 1 & her lack of crawling & walking was put down to low muscle tone. He wanted to see us again in 12 weeks.
I had never heard of NF1 before so I began to ask questions. He wrote the name on a piece of paper, tore it off, handed it to me & told me to google it. We chatted briefly & after some thought he said “Actually, don’t google that, there are a lot of scary things written about NF1 & 99% of them don’t & won’t apply to Macy” & with that he took the piece of paper back.
A couple of weeks later she walked. For the next 18 months we continued to see him quarterly & she also had her eyes checked regularly by an Opthamologist.
There was a change in the number of spots but never any other symptoms that he said he was looking for.
On her 3rd Birthday she broke her left arm. When the plaster was removed I noticed she hadn’t started using it again. She was due back at the Paed’s so I mentioned it to him, he organised for her to see the Orthopaedic Surgeon who took X-rays of the top half of her body. The bone was healing well & her bone structure looked good.
He suggested to me that she was showing signs of Cerebral Palsy. I remember thinking how on earth does a healthy 3 yr old go from a broken arm to having Cerebral Palsy?
He suggested we discuss this with her Pediatrician at the next appointment.
Over the next couple of days I noticed that she started to fall asleep on the floor & in random places throughout our home. She had never done that, she was a swaddled baby & she went off to sleep in her bed once she was tightly wrapped. Both my girls did.
I was discussing this with my Mum a couple of days later when she said “There is something wrong with her, I just know, she’s not herself”.
I knew then that I had to get her into the doctor without telling her what I was about to do, I left & went home to call the the Paed. The receptionist said he wouldn’t be able to see her for another 6 weeks. I explained a little bit of what was happening & said I was bringing her there right away & demanded someone see her. An hour later he examined her closely & said he was sending her for an MRI. We sat there while he called them. He requested an “Urgent MRI for a suspected tumour”. It was arranged for the next morning. I then had the urge to google NF1 for the very first time. I wish I had done so when she was diagnosed. Maybe I’d have recognised the signs earlier.
A week later Macy was diagnosed with multiple Pilocytic Astrocytoma’s (brain tumours) aged 3, June 2012.
She had lost partial mobility down the left side of her body before she was even diagnosed.
That morning we were sent to the RHH & we were told we wouldn’t be taking her home any time soon.
We met with the An Oncologist, a Neurosurgeon & 2 Oncology Nurses. Her treatment plan was discussed & thankfully we were allowed to take her home that day.
4 weeks later she had major brain surgery to remove one of the tumours, (one in particular was creating all the havoc) it didn’t quite go to plan & they were only able to remove a small part, any more would have left her blind & paralysed.
After 4 weeks of recovery she began Chemotherapy & for the next 2 years this became a regular thing along with the MRI’s every 6 weeks then she experienced an allergic reaction to one of the drugs so they decided to give her a break from chemo to see how the tumours reacted without Treatment.
We were terrified.
12 weeks later she had an MRI & it showed the tumours were stable. It was agreed that they would wait another 12 weeks. She had her usual Opthomology check 5 weeks into this break & her vision had declined rapidly, she was diagnosed Legally Blind in 2014. This also meant there was a change in the tumours. They were no longer stable.
For the following 2 years she was treated with various Chemo drugs without any decrease in the size of the tumours. There was nothing else available for them to try at this stage unless we could get her onto a Clinical Trial at the Royal Children’s Hospital in Melbourne.
The trial went well, the tumours were stable & she completed it on March 5 2018.
Next week she is due back in Melbourne for an MRI to find out if the tumours are still stable & if not where we do we go to from here?
Superhero’s don’t always wear capes but this one truly deserves one!
For the last 6 years I have constantly asked myself why I didn’t research NF when she was diagnosed. If I had, I might have been able to recognise the signs sooner. She may not have ended up with the loss of mobility & she may not have lost so many of her childhood years. So much has been taken from her & from all of us as a family but I consider us as the lucky ones, our Cancer Journey has been a long one but we still have options, we are still hopeful, & we are still fighting.
I want to create as much awareness for this horrific Genetic Condition as I possibly can & that is why I’m helping the Cupid’s Undie Run go ahead in 2019!