Danika's parents Natasha and Scott share their daughter's journey.
Danika is our brave little NF Hero and in our family is the third generation diagnosed with Neurofibromatosis Type 1. Danika was only five weeks old when I was bathing her and noticed her first cafe-au-lait spot on her leg. This was the first indication. Having NF myself, her older sister (Matilda) and her grandfather with NF we knew this was the start of her journey.
Danika was a very happy baby. Being our third girl and having a two and four-year-old at the time she was on the go from a young age. She met all her milestones within the expected timeframes and started kindy last year. Soon after starting school, she started having symptoms where she would randomly vomit but appear fine soon after. Regular GP appointments and some ideas of tummy bugs, food intolerances and hereditary abdominal migraine we’re tossed around. Despite the family history of NF, it was not considered to be related to the condition. Danika was eventually diagnosed with hereditary abdominal migraines and prescribed medication.
My mum gut told me she was wrong but I agreed and walked out feeling uneasy."
A couple of months passed and things progressed, nausea and vomiting were often at their worse first thing in the morning or soon after falling asleep at night.
After some further tests, I asked for a brain MRI. It was then they discovered Danika had a 5cm mass on her cerebellum. This news crushed the world we lived in and we were naturally scared and devastated."
In September 2020, Danika underwent an 8-hour surgery to debulk some of her tumour and send a sample to see the type of tumour she had. Unfortunately, because the tumour is close to her brain stem a small debulk was all that could be done.
We were warned that Danika’s recovery from the surgery could be gruelling. The Neurosurgeon advised us of all the possible side effects after surgery as the nearby cerebellum is responsible for balance, coordination, and speech. We were cautioned that Danika may need to have therapy to walk again, may need assistance feeding, may have difficulty holding a pencil. Alarmingly, we were told that it may take up to eight weeks of therapy to regain her speech. Thankfully, within half an hour of waking up and still in the ICU, Danika asked for “water” and “a chicken sandwich, not ham.” She recovered well and a week later we were home.
Within 7 weeks her symptoms reappeared, she had morning vomiting and was waking in pain. An MRI revealed the devastating news the tumour had grown back.
Our team were scared. We were rushed back into a second lengthy surgery. Danika's team worked tirelessly and her biopsy came back as stage 3 brain cancer. "
A third operation was not considered at this point. Our team now understand the tumour more and she has been placed on a brand new drug Larocrectinib, which is not commonly used in Australia. We lived at Ronald McDonald for almost 100 days so that she could be monitored closely as she was trialling this drug but it has kept her tumour stable for eight months. She now enjoys being back at kindy full time, she has her oral targeted therapy drug twice a day and she has very minimal side effects from this miracle drug.
She continues to have a brain MRI done every eight weeks to watch for any changes. While her tumour remains incurable, we remain hopeful that clinical trials will keep her living a wonderful long life without the harsh side effects of chemotherapy and radiation.
Danika is about to celebrate her 6th birthday and a year post-diagnosis and we have big plans for a massive celebration for our brave little girl."