When Robbie arrived into the world, mum Lyndell was delighted.
As Robbie developed in those first few months, she noticed he was quiet, and as weeks became months Robbie’s language was mostly echoing and as months became years Robbie spent much of his time rocking. At three years of age, he was diagnosed with autism.
The year that followed was a challenging time, learning and navigating the, but the family was set on getting Robbie as much early intervention as possible.
Then the family received more shocking news. Robbie’s older sister Hanna was diagnosed with Acute Lymphoblastic Leukemia.
After 2.5 years of treatment, Hanna got through her Leukemia. As they drove out of the Children’s Hospital on her last appointment, Lyndell cried happy tears, even though the treatment had left lingering side-effects, including sleep disturbance and physical issues with her legs to name just a few.
Robbie started school at an autism specific school, after completing an extra year of prep school with an aide. Robbie started to thrive with the additional support of speech pathologists and occupational therapists. He enjoyed the routine, sensory areas, new friends and great teachers.
Outside of school, Robbie was your typical little boy who loved Thomas the Tank, Walle (from Pixar), Mario and Bunnings! Robbie loved his inflatable green hammer so much that he took it everywhere and even slept with it.
During his primary school, his interests changed and grew. He learnt to ride a bicycle, learnt to cook, garden and create things in woodwork. “We loved watching him embrace each new interest and make huge gains in his development. From a child who would “echo” most of the time, we had a young man with whom we could have really great conversations.”
During a meeting with one of Hanna’s specialists in the Sleep Clinic in November 2019, Lyndell casually mentioned that Robbie also had had a lot of sleep issues, that he had lots of ear infections and some hearing issues, which was creating learning and behaviour issues. This led to years of seeing different Ear Nose and Throat surgeons and four sets of grommets. These tiny ventilation tubes were put inside the eardrum to prevent a build-up of fluid.
During one of his many surgeries the doctor found a lump. Tests were done and it was suggested Robbie had a Cholesteatoma (skin growing into the middle ear). A hearing test six months later showed that even with grommets, Robbie’s hearing was not great. Following all of this the family transferred his care to the Royal Children’s Hospital Melbourne.
In October 2020, Robbie completed an overnight sleep clinic study and they found he had severe Obstructive Sleep Apnea, so more surgery was scheduled to remove his adenoids and tonsils.
It was during this operation that the surgery team found a lump the size of a pear in Robbie’s throat. It was devastating news. The lump was pushing up against his ear and was suspected of being responsible for his loss of hearing. But more worrying, was the fact that this lump was obstructing his breathing.
Two weeks later, he had to undergo another operation to biopsy the lump. At that stage, no-one was completely sure what he had going on. “When the Oncology team entered the room, my heart sank. I had already walked down this road with Robbie’s sister Hanna. I honestly didn’t know if I could face this again.”
“Suddenly we were surrounded by a huge medical team trying to work out what was going on with Robbie – I was grateful for the care, but also so worried. Robbie took it all in his stride – he just took all the prodding and examining and never complained.”
The genetics team came into the pictured and for the first time, the family started to hear terms like Schwannomas and Neurofibromatosis. A month later it was confirmed, Robbie had NF2.
Subsequent testing on the rest of the family confirmed that in Robbie’s case, his NF is spontaneous.
An MRI showed Robbie had three tumours: one in his throat, one at the base of his spine and one in his left ear.
In March 2021 the ENT Surgical team attempted to remove the tumour from Robbie’s throat. Robbie was on the operating table for nine hours and it was eventually abandoned with only 80% of the tumour removed, as the surgery became too dangerous. Robbie had to be revived as he went into cardiac arrest. He spent five days in hospital. “This event changed Robbie, and the whole family. I am now in constant fear for Robbie’s health and life.”
Even though Robbie had gone through surgery for NF2, Lyndall says her family “still did not have a great amount of knowledge of the condition. We searched the usual places like the internet, but it wasn’t until we attended the NF Community Information Day, coordinated by the CTF that our knowledge really grew.”
The family connected in with the support team who provided information for Robbie’s school and NDIS providers to make them aware of NF2 and what they need to know when working with him.
In January 2023 Robbie had another MRI. Unfortunately, two new tumours were discovered, both now in his right ear. His left ear tumour is currently stable, as is the one in the base of his spine. Worryingly though, the one in his throat has started to grow again, but in a different direction to before. “I am now filled with dread that Robbie will again have to face the prospect of more surgery on this tumour.”
As usual, Robbie continues to be happy and upbeat and is focused on his schooling. This year he has entered his final two years of High School and has started a VET course in Computer Game Design, which is his passion. He wants to make the world a better place through his computer games, which all contain social messages of peace and tolerance.
Robbie has many hurdles to face in his future, and while it is difficult, we will face it together as a family. “We are in awe of his strength and positivity every day.“