We returned to Melbourne on the 18th of September for our first regular scheduled EUA after completing 3 successful rounds of intra-arterial chemotherapy. We remained hopeful that the IAC may have eventually done enough to kill the main tumour in Isla’s right eye, but were also well aware that it may not work and she could still lose her eye. After the reports along the way that the tumour was still looking much the same, we were basically of the opinion that if she gets to keep her eye now, it will be a bonus. It will just be a ‘watch and wait’ for a couple of months now to see if there is any positive change in the look of the tumour and hopefully it doesn't start to regrow.
We arrived in Melbourne Wednesday morning and our admission time was 2pm, so we popped to the zoo for a couple of hours again to kill some time.
Once Isla was admitted the anaesthetist suggested we try a pre med this time as Isla is getting to the age where she will start to remember her experiences in hospital and try to fight it more. A pre med is just an oral medication that makes her dopey and she will forget everything that happens following it, ie – being held down with an anaesthetic mask held on her face. I believe they also hope at some point it will make her dopey and compliant enough to be able to put a cannula in for her anaesthetic without having to use the gas mask at all. The pre med will cause her to take a little longer to wake up in recovery and she may seem a little ‘hung over’ once she does wake up. So we agreed to attempt the pre med. She did get a little dopey, but still fought the gas mask as much as usual, but whether forgetting the experience will make future visits easier I’m not sure. She did take a while to wake up in recovery and was still quite dopey when she did wake up.
They didn’t find any new tumours this month and they did the ultrasound to measure her main tumour and fluorescein angiogram to look at the blood supply. They thought the tumour looked slightly less active than it did last month. It still had blood vessels going to the tumour, but some of those were very damaged and ‘leaky’. There was some fluid under the retina, so it is a very sick eye. They confirmed that they have probably exhausted all options for further treatment and it is just watch and wait at this stage. The ophthalmologist wasn’t convinced either way, as far as the tumour being dead or alive. He mentioned that even if they do think it is still growing at any stage, they will probably just keep monitoring it for several months before deciding to remove her eye, as they have had children in the past where an eye was removed and the pathologists found no sign of active tumour in the eye.
Some of Isla's fluorescein angiogram images (right eye)
The Melbourne team suggested and organised for us to have a proper vision test in Adelaide to try to get a good visual assessment and work out how much vision Isla has in her right eye. That way we will have all the information and know how hard to keep fighting to save her eye. Sandra, the orthoptist in Melbourne, generally attempts a bit of a vision test before each EUA, but they thought it might be a bit more successful in a different environment, when she’s not fasting. So that was scheduled in Adelaide for the 3rd of October.
Once Isla was discharged from recovery we headed back to our room in care by parent (in the hospital) and got settled in for the night. This night was awful!! It was like Isla was still drunk, not hung over!! She couldn’t walk properly, but just wanted to be walking around ALL THE TIME!!! She would not settle and wouldn’t go down in her cot and she and I got about 3 hours sleep all night. So we were not super keen on using the pre med again unless there were some real benefits in doing so. After waking up to our 5am alarm and feeling like rubbish we dragged ourselves downstairs, poured a coffee down our throat and met our taxi to take us to the airport. Poor Garreth had to carry out a days work after this and Isla and I stayed at home and did absolutely NOTHING.
© Alison Davey 2021