This is Riley August 2006 – 10 years old – Pre Brain Tumour
On the 29th of September 2006, my life changed forever… Well, actually it was probably the 28th of September 🙂
My son had been away on holidays with his father for a week and on Thursday the 27th of September, his father rang me to say that they had come home early from their holiday as Riley had been vomiting most of the week. We decided that his Dad would watch him that night and then take him to our Doctors the next day.
The next day his Dad rang me to say he didn’t vomit during the night so he would just watch him and not take him to our Doctors. I was fine with that cause I didn’t know any different. But unbeknown to us Riley had been vomiting all night, he just hadn’t woken his father and told him. By lunchtime that day Riley’s Dad had got an emergency appointment for Riley with our Doctor as Riley was getting worse.
At 2pm on Friday the 28th of September I received a phone call from my Doctor asking if I had Private Health Insurance, the answer was yes. He then advised me that he was admitting Riley to the Private Hospital as he believed Riley may have appendicitis and would need an emergency operation and one of the Paediatric Surgeons he knew was operating there at the moment.
When the Surgeon finally came to see Riley he did some tests and advised us that Riley didn’t have appendicitis and he didn’t need an operation, but there was something seriously wrong with him and that Riley needed to stay in hospital and he would get a Paediatric Specialist to come and see him in the morning.
On the morning of the 29th of September Riley had blood tests and various other tests. At 5pm that night all the results were in and they still couldn’t find what was going on. By this time Riley was unconscious and had ice wrapped around his head to keep him cool and his head was swollen. I asked the Paediatric Specialist if it was possible to do a scan of his head, as obviously something was going on there. The Specialist agreed and they called in a Radiographer and undertook a CT scan.
By the time we got back to Riley’s room, there was the Specialist and a few other people in his room waiting for us. They had found something in his brain, but they couldn’t work out what it was from the CT scan so they had arranged for us to go to the other local Hospital where there was an MRI machine. He needed an MRI for them to make a diagnosis. He needed the scan now and they didn’t want to wait for an Ambulance so they asked us to drive him.
When we got to the other hospital they were waiting for us, we were shipped straight through to the MRI and Riley was scanned. By the time we got back to the Private Hospital, the Specialists and other people were waiting for us again. They told us that they had sent the scans to the Royal Children’s Hospital in Melbourne and would come back and see us with what the next step was.
A few hours later they came back to see us. Riley had a Brain Tumour and needed to get to the Children’s Hospital ASAP. Now we live 2 hours from Melbourne where the Hospital was located and most times when there is an emergency patients are flown to Melbourne. But because Riley had a build-up of pressure in his brain they couldn’t risk flying him to Melbourne, therefore he had to be taken down in a special Ambulance, which was coming up from Melbourne right then.
We waited around for 2 hours for the Ambulance. During that time we rang our Parents, our friends and organised Riley’s brother and sister and who would look after them. We organised our work and other schedules. We had no idea what the future was going to be for us. – I have also written a blog around this part of Riley’s story, called How God Saved My Boy, if you would like to read it you are more than welcome to click HERE.
My Ex-husband went to Melbourne with Riley in the Ambulance, he had organised for his Girlfriend to get some clothes together and bring them down the next day. I went home and packed a bag and headed to Melbourne to meet the Ambulance at the Hospital.
That night we ‘slept’ in chairs around Riley’s bed, he had been admitted to the Neurology Ward of the Hospital. More tests were done first thing in the morning and more scans were done. We were advised that he had a Brain Tumour in the middle of his brain, but they couldn’t tell us any more.
Later that day they had worked out that Riley had a non-germinoma germ cell tumour in his Pineal Gland, it was the size of a golf ball and had grown over the hole where the spinal fluid flows through to the brain. Therefore his brain was swelling with the build up of fluid. His tumour was considered an aggressive tumour (which meant it was cancerous). Because of the position of the tumour, there was no option to operate and remove it, therefore the only treatment was aggressive Chemotherapy and Radiation Therapy.
From the above image, you can see where the Pineal Gland is. The blue stuff is the Spinal Fluid and where it flows through the brain and spine. The entry to the brain from the spinal cord is where Riley’s tumour was located.
There was a side note to the Chemotherapy and Radiation Therapy treatment plan, we were advised that the treatment had to be the highest level they could possibly give a child. That Riley would be sick for the whole time he was being treated and would probably not go to school for 12 months. Oh and if the tumour didn’t kill him, then there was every chance the treatment would. BUT he needed the treatment to survive. This was a Parent’s worst nightmare.
Before treatment could start they needed to release the pressure in his brain which meant he needed a stent put in so the brain could drain. But after some discussion, they decided to try a new procedure (of which I can’t remember the name right now 🙁 ). Basically a stent involved them drilling a hole in the side of his head and inserting a tube into to drain out the fluid. The procedure they did was to drill from the top of his head down to the spot where the tumour was and drill a 2nd hole at the base of the brain so the fluid could drain out of that and into the spinal cord as it should.
This is Riley on the day of his operation to relieve the pressure on his brain. You may be able to notice the swelling of his head. the football jumper is from his football team, all the players had signed it.
The operation was scheduled for sometime after lunch on Wednesday the 3rd of October. So we waited and waited and waited. At 10.3opm they came and told us that the Surgeons were still in another surgery and if they didn’t finish that one before midnight Riley’s operation would have to be put off till the next day. He went into surgery at 11.45pm and got out around 4am. It was the longest wait of our lives.
This picture is of Riley the day after his operation, he was more alert and in less pain. Even though this was just the beginning of everything, it was so good to see him like this.
This is a picture of where Riley’s operation was, on the left was when the staples were still in and on the right is when they were taken out.
The surgery was a success and Riley’s swelling started to go down. But that was only the start of things. Once this operation was over we then had to start his treatment plan. The plan was for him to be in the hospital for 5 days having chemotherapy and then home for a few weeks, then back for 3 days of outpatients chemo, home for a few weeks, then back for 5 days in the hospital. This routine continued for over 6 months.
Once the Chemotherapy finished we then moved on to Radiation Therapy. Radiation Therapy was for 6 weeks, 5 days a week. The Children’s Hospital offered to put us up in a motel in Melbourne for the duration of the time, but Riley didn’t want to stay in Melbourne. So we ended up driving down each day, leaving Bendigo at 6.30am and getting home at around 11am. Riley then went to school each day as he didn’t want to miss out on anything.
Once all treatment was finished Riley then had monthly hospital visits for a few months, then three monthly visits, then six-monthly visits and finally annual visits. 13 years later and Riley is still having annual visits and is going awesome.
We are very very grateful to the Specialist and all staff at the Children’s Hospital. The care and treatment that we received was just outstanding.
And don’t forget, I’d love for you to become part of my community. Fill in the form below 🙂
