The nightmare started long before diagnosis. Little to our knowledge Riley’s symptoms started presenting themselves early in 2011…an unquenchable thirst and sleeping more than normal with a terrible sleep pattern.
My ex wife and I took Riley to the doctor numerous times and blood tests were undertaken but it wasn’t until Riley had an absence seizure at home on 5 December that prompted our doctor to send him for an MRI and EEG. By then he had started bumping into things and become very vague. I will never forgot Thursday 15 December 2011…the day our doctor told us that our 13 year old son Riley had a brain tumour.
We were sent to the Gold Coast Hospital where we were informed that Riley had a 3 cm tumour blocking the passage that would normally allow the fluid to drain, thereby causing fluid to build up on his brain. We spent 2 nights at the Gold Coast Hospital before being transferred to the Royal Children’s Hospital on Saturday 17 December. It was at the Royal Children’s that we were told Riley had in fact 2 tumours as well as the 3 cm tumour he also had a smaller one near his pituitary gland. All of a sudden there was a reason for Riley’s behaviour…the sleeping; the unexplained vomits; the vaguness and the stiff neck my sister told me Riley had…all related to those tumours…..the excessive drinking was more serious.
Riley had developed diabetes insipidus a condition caused by permanent damage to the hormone that concentrates the urine as a result of the pituitary tumour. Riley’s body wasn’t retaining any fluid, he was passing litres of urine a day and his sodium levels were dangerously high.
Riley underwent surgery on Sunday 18 December to release the pressure on his brain; a sample of the tumour and the brain fluid was also taken. He spent 2 nights in Intensive Care before being transferred to High Dependancy. He remained there until we received the diagnosis… 2 malignant Germinomas…apparently the brain tumour lotto although I didn’t feel like much of a winner… Riley went back to surgery to have a central line inserted and was transferred to an Oncology Ward ready to start chemo. Christmas, New years & my 40th birthday was spent at the Royal Children’s with Riley undertaking day 3 of his first round of chemo. The nausea, vomitting, diarrhoea and hair loss soon followed. It was a really tough. He spent 6 consecutive weeks in hospital over the December/January period as they had great difficulty maintaining his sodium levels.
We spent the 7th week in Brisbane as we weren’t yet allowed to return to the Gold Coast and were on daily visits to the hospital. Riley undertook 2 rounds of chemo in total which meant 3 days in hospital a month for 4 months. I had to learn how to give him injections into his leg to help build his white blood cells.
I became familiar with the term neutropenic; recognised when he needed a platelet transfusion, became very aware of cuts and scratches and the need to watch for infection, temperatures were another concern… Riley had a box of medication which I had to become responsible for dispensing… Bactrum twice a day Mon, Tues and Wed…. to help prevent a chest infection oncology kids are susceptible to… His DDAVP for his diabetes insipidus, potassium tablets and Nilstat… A timetable was given to my by the pharmacist at the hospital to help me with what medication needed to be taken at what time. It was quite overwhelming.
Riley had a break of about 4 weeks before he started radiation… 5 days a week for 6 weeks. Because Riley had radiation to his head and spine the nausea and vomitting started again…and the hair loss… and the need for blood/platelet transfusions…and he also became very tired. Riley was fortunate in that the radiation machine they used on him is the only one of its kind in Australia and is guided by scans to reduce the risk of damage to healthy tissue. It meant Riley had to be scanned before radiation started…it took about 40 minutes from start to finish – all going well. We chose to travel every day to Brisbane from the Gold Coast as it was better for Riley to be at home in his own bed and surroundings as he developed a complex vocal and motor tic disorder – a result of the tumours, which he is being treated for by a psychiatrist. The side effect of medication is awful, with our Oncologist referring to him as having Parkinson’s-like symptoms…it has also seen him require 2 hospital stays, the first after going into urine retention.
Riley was given the all clear on 4 July 2011 and his central line was removed 4 weeks later. We are yet to find out whether he will require assistance with his growth and puberty but he needs to be tumour free for 12 months before any of that can be dealt with… He will have regular MRI’s and although Riley will be on medication for his diabetes insipidus for the rest of his life, we are one of the lucky ones. Riley’s treatment has been short compared to many and he has a really good prognosis, but none of what we have been through has been easy. For me the hardest part has been the effect the tumours have had on Riley…his short term memory has been compromised as has his fine motor skills and concentration. He has lost social cues and being able to engage with kids his own age… It will be some time before we know whether there is any other permanent damage but I long for the day he is a ‘normal’ kid again. He strated rehab – blocks of treatment with a Speech Therapist, Occupational Therapist and Physiotherapist. We have also discovered Riley is super sensitive to medication so he is still having regular blood tests.
Over the last 2-3 years Riley has been on regular growth hormone treatment which has let his legs grow too fast and an abnormal gate stance has developed. Leaving him with serious bone structural problems which may require future surgery. This is not the end of Riley’s battle, he faces a life long struggle through existing and developing complications.
My Hope For Riley is that people can see passed the physical, and mental issues that are visually present. And his positive out going personalility will be a beacon of strength for all that have the previdge to meet him.
His future remains unclear, but I’m sure the the world will welcome him with kindness and give him the opportunities that he deserves.