On Wednesday the 6th February we headed back to Melbourne for the normal scheduled EUA. Dr Elder, who normally speaks to us was away this month, so Dr John McKenzie came to speak with us after Isla’s EUA. We had flights booked to return to Adelaide the following day, but again everyone was on standby ready to change those plans if required.
Our understanding was that the original dose of IAC could still be working and the tumour may have shrunk again even without successful treatment last month. If it was looking stable or better than last month, we expected to book in another attempt at IAC in a few weeks time. However, an IAC booking had been made for the following day should it be required.
The doctor confirmed that there were no new tumours, but the active tumour appeared unchanged since last time. He suggested we go ahead with the IAC the following day. I queried this with him, as we were under the impression that we would only go ahead if the tumour appeared to be growing again. He basically said that not shrinking warrants another attempt now just as much as growing does. They like to give one extra dose of chemo once they’re happy that the tumour has been destroyed, so they need to stay on top of it and not give it a chance to start growing again.
So the following day we arrived at medical imaging at 12.30pm for our second attempt at a second round of IAC. A play therapist was booked for Isla again and she met us in the waiting room. A nurse then came to take us through and started the paperwork and obs to get ready for the procedure.
The same anaesthetist as last time was there and he came out to meet us again. The radiologist then came out to meet us and get the consent form signed. I had a brief chat with him about last time. I again queried the timing of this attempt as he had been in her arteries 3 weeks prior. My understanding was that the length of time between procedures was important to allow the arteries time to recovery from any damage. I asked how he felt about going in again after only 3 weeks. He mentioned the main damage comes from the chemo drug itself and not just the guide wire/catheter entering the arteries so he was comfortable attempting again. He believes we were probably a bit hasty to attempt the 2nd round 5 weeks after her successful IAC, whereas it probably should’ve been 6+ weeks. Unfortunately our interstate travel and coordinating the team makes timing and bookings a little trickier than if we perhaps lived locally and could pop into the hospital at any time.
Eventually Isla went into the angio suite. Garreth took her in with the play therapist and the gas was administered while Garreth held Isla in his arms. Usually she is just placed on the bed, but as she gets older, stronger and more aware this becomes more difficult. The play therapist had toys and videos to help try and distract her, which did help a bit.
Garreth and I went out for a walk and got some lunch. Sandra wasn’t in the hospital that day, so we didn’t have anyone in the procedure to update us on the progress. We headed back to the hospital after lunch and waited in the medical imaging department. It was a REALLY long wait this time, so we were starting to get nervous, wondering what was going on. Eventually the radiologist called me and said he was sorry, but he didn’t have good news. He didn’t manage to get into the ophthalmic artery. He said her arteries were in good condition but the ophthalmic artery did go into spasm again and he was unable to get the catheter in. I asked if they would keep trying and he said he’s happy to try again next week and he doesn’t want it to beat him, but obviously its up to the eye/oncology team as to where we go from here.
After another overnight stay in hospital, we left Melbourne the following day, not knowing exactly when we would be back to try again. It was suggested that they might attempt it again in 1, 2 or 4 weeks time. It was eventually decided that we would try again in 4 weeks.
On a positive note, Isla commenced her catch up immunisations in February and will be close to being up to date with immunisations by the time she commences childcare in May, which is a relief.
We also got to spend a few days in Melbourne for fun this month to hopefully help disconnect the airport and flights from the hospital and bad experiences for Isla (although I'm pretty sure she actually enjoys going to hospital!). Garreth had to go to Melbourne for work, so Isla and I joined him for a few days and then we spent the weekend in Melbourne together, which was lovely.
Brighton Beach Boxes
Melbourne Aquarium
© Alison Davey 2021