Thank you for the opportunity to tell you my dad (Rodney Heley) story on how we got to his diagnosis, progression and end of life for Glioblastoma Grade 4.
On January 4th 2019 our family went away on our annual family holiday (mum (Jenny), dad, my oldest brother Michael, my other brother Brendan and his wife Rose and their two children, myself and my husband George and our two children, and our destination we chose was Mildura as 6 months prior my Grandmother had passed away (my dad’s mum) so we chose Mildura as her headstone was put on so we wanted to see it..
Throughout the 10 days we were in Mildura we had noticed that dad wasn’t himself, repeating himself a lot (asking the same question in a space of an hour), disorientated, decision making, confused and had experienced a depression episode, at the start the family put it down to grief with my grandma as my dad and his mum shared a very close bond, but as time got on, we all thought there was something else going on...
Sunday 13th January
We all arrived back in Melbourne from our annual holiday and my mum, Michael took dad to his local dr on 14th January, mum and Michael talking to dr about how dad was when we were in Mildura, the dr ordered blood tests and a mri scan.
I took my parents to the MRI and took dad to his appointment, my dad had been in the scan for 40 minutes and I asked the receptionist at the MRI when will his GP will get his results and the lady told me 2 business days, dad had come out of his scan, we got a takeaway coffee to back home, within 20 minutes of getting back home, my mum received a phone call from their local GP to say hey got results from my dads mri and they need to see my dad urgently, Wednesday 16th At 10am my dad and mum, Michael and I got to drs appointment and were told that dad has two adhesions on the brain and the type they suspected was a glioma is been questioned, urgent cat scan was ordered and that was done on Thursday 17h January.
Mum got a call and to say that we need to organise a neurosurgeon and they will organise a referral to see one of the top specialist in Geelong. (My parents lived in Geelong) 22nd January we met dads neurosurgeon Nick, I explained to Nick that he needs to be honest with everything he discusses with us, not sugar coat, we’ll wanted to know the truth, it didn’t matter how much it would hurt. Nick delivered the bad news, put the scans up to show us where the tumours were (one was 3 cms left frontal lobe and the other 5cms deep in core of the stem of the brain) we were told unfortunately dad tumours were inoperable due to location. Nick the neurosurgeon said he will need to perform a biopsy because he needed to 100% sure that it was in fact GBM and therefore this type of cancer there is no cure, also to see if it was a genetic tumour, also to tell us his prognosis and also to let us know how long it had been there for...
Dad has wanted to do a bucket list with the family. The 1st thing he wanted to do was go to the Gold Coast with the family for another holiday in feb/ March but unfortunately the specialist ruled long distance holiday would not be vital for dad due his memory loss, disorientation. Dad was disappointing but I said doesn’t matter dad, we can do road trips we will stay somewhere along the beach is a 5* house, we always tried to be optimistic for dad throughout the whole process, my dad was very positive and wanted to start treatment ASAP.
Dad’s biopsy was performed and all went well in surgery, we were told we will get the results in 5 days as there is a lot of pathology work that needed to be done on the biopsy samples... 31st January- went back to see Nick (neurosurgeon) to get results for dad’s biopsy, mum, dad, and us 3 kids were there to support dad and mum and here the results we were all anxiously waiting. It was not great news at all, we had found out from the biopsy that dad was going blind in his left eye, and it was GBM grade 4, the cancer had only been there for 6 weeks (which meant week of Christmas) and there was lot of fluid which meant treatment couldn’t happen straight away till they could reduce the swelling which dad was put on a steroid.
Nick had given us if no mainstream treatment could be done (chemo and radiation we would of had dad 3-6 months, with mainstream treatment 12 months.
Saturday 2nd February
We hired dad a walker because he was unbalanced, walking was slower.
Dad has fell in the toilet due to balance issues and we got a wheel chair to help dad long distance walking (ie drs, specialist shopping appointments)
My dad lost his incontinence and his strength in his legs are weakened, so walking was shuffling
Dad became paralysed and lost all strength in his legs, wheelchair bound. Today was our first appointment with our oncologist at 2pm and that was the day the oncologist admitted my dad in hospital urgently, they wanted to pump him up with maximum steroid to try and reverse the symptoms as quickly as they could, so dad can have a lot more quality of life.
I asked the oncologist how will you know if the steroid and treatment plan is working for my dad, what should we be noticing? He said dad wouldn’t sleep much because of the steroid, he would get agitated, more alert.
As the family agreed that dad would never be left alone at the hospital so someone was staying with my mum in my dads room each night, my mum never wanted to leave my dads side. So my brothers and I took in turns to stay with my mum and dad every night and sleep at the hospital.
We noticed dad wasn’t awake much throughout the day and night, my brothers and I started to worry that treatment wasn’t working basing it on what the oncologist told us that dad would be more alert etc.
Dad was less verbal and sleeping a lot, 7.30pm dad’s oncologist David came and saw us in dad’s room and asked us to come out to discuss dads treatment plan, the oncologist told us as what my brothers and I thought, that dad isn’t responding to treatment, no matter what they did medically, the tumour was too aggressive. Unfortunately, they can’t do anything else for my dad, so they have to make dad comfortable now. We asked how long does he have? He told us “days” David has suggested that this was the time to call family to let them know if they want to see him then they need to organise it for the next couple of days, we then realised that dad was never coming back home this was the worst sentence I have ever heard in my life.
My dad is going to pass away in the near future and my brothers and I won’t have a dad, my poor mum has lost her soul mate, her beat to her heart is about to leave, my parents been married 44 years 23rd April and been together for 46 years. They were about to start their dream, had purchased a brand new caravan that was going to be their new home and travel around Australia.
Dad was less alert, appetite was a lot less, slept more but still gave us communication by body language, a few words verbally but wasn’t a lot.
Extended family started to arrive to see dad, and that day my dad realised he was going to die, he said one sentence to my mum, this was the only communication he made with us verbally that day question was “who is coming to see me today” my mum explained to him who was coming, and he was pleased who was coming. Think this was the day that dad knew he wasn’t going to be on earth for much longer.
Nurses and drs has told us no food or fluid due to dad would choke, my dad sleeping.
Dad has slept Most if he day and nice with about 10 Minute awakings the past 24 hours, semi coma.
Dad was asleep for the whole day, not active all, but still held our hands and nodded.
My dad passed away peacefully around the family at 4.04am.
I really hope we find a cure for this tumour, I hate for another family to go through the pain we are going through losing my dad and husband to my mum. This tumour was so aggressive, our medical team/ nurses in disbelief how rapid decline my dad was going.
Our family would love to be involved in any fundraising we can do for you guys, I would love to create more awareness and in hope finding a cure. This will also help me personally to put my grief into something positive in honour of my dad, this opportunity would be perfect.
Thank you for reading and let’s hope a cure is just around the corner.
Written by Katrina Mitropoulos (daughter)