Written by Suzannah, Macy's Mum
For the first year of her life, Macy suffered badly from ear infections and constant fevers. During one of our appointments with the GP, I mentioned in passing that she did not seem interested in walking, which I had initially put down to the fact that her older sister was more than happy to bring her things. She was around 18 months old at the time. I was surprised at how alarmed he was by this. Enough to send us to a paediatrician that afternoon who examined her closely and noticed some spots that I had always thought were birthmarks, but were in fact cafe-au-lait spots.
Her inability to walk or crawl very far was put down to low muscle tone and we walked out of his office with a diagnosis of Neurofibromatosis Type 1 (NF1) and instructions not to Google it. A couple of weeks later she walked, but we continued to see the paediatrician and opthomologist regularly. For the next 18 months, we saw very little change in her condition or signs of any of the symptoms we had been told to look for.
On her third birthday Macy broke her left arm, but when the cast came off, I noticed that she hadn’t started to use it again. She was referred to an orthopaedic surgeon who suggested that her gross motor development could be signs of Cerebal Palsy. I was shocked, how does a healthy three-year-old go from a broken arm, to having Cerebral Palsy?
Something didn’t feel right and things became progressively worse when Macy began to fall asleep in random places around the house home a few days later.
WE COULD NEVER HAVE PREDICTED HOW NF WOULD TEAR OUR LIVES APART.
I rushed her to the paediatrician and demanded someone examine her. The next thing I knew, an “urgent MRI for a suspected tumour” was organised for the next morning. Suddenly the frightening seriousness and reality of Neurofibromatosis became all too real. Within a week for Macy to be diagnosed with multiple Pilocytic Astrocytoma’s (brain tumours).
At just three years of age, Macy had lost partial mobility down the left side of her body and was scheduled to have brain surgery.
We were terrified. Unfortunately one tumour in particular could not be completely removed, else risk her going blind or even becoming paralysed. And so, Macy’s chemotherapy journey began.