December was a bit of a messy trip for us. The EUA theatre list is run every 4 weeks on a Wednesday. The intra arterial chemo (IAC) team is a little harder to put together at a moments notice. Since we are travelling from Adelaide, it made it even harder to co-ordinate.
The eye team wanted to have a look at Isla’s eyes again before deciding whether or not IAC was necessary this month. So an EUA was carried out on Wednesday 12 December and we were booked in for IAC on Thursday 13 December, should it be required. Since we didn’t know until the last minute whether or not the IAC would be going ahead, flights and accommodation became a bit of a mess this month. EUA’s are just a day procedure, so Isla normally stays with us in Care by Parent (in the hospital). However, after undergoing intra-arterial chemotherapy Isla would need to be admitted to the hospital. One parent can stay on the ward with her, but we would need alternative accommodation for the other.
Isla was first on the EUA list this month as we needed to know ASAP whether we were going ahead with the IAC. No new tumours were found and they applied some more cryotherapy to the two small tumours that were found last month. The large tumour looked similar to the previous month so the doctors recommended going ahead with the intra-arterial chemo the following day.
After spending some time in recovery and confirming our accommodation and flight plans we all headed back to our room for the night. We managed to get a room in Ronald McDonald House just across the road from the hospital.
Christmas time at the Royal Children’s Hospital
Gingerbread model of Royal Children’s Hospital
Intra-arterial chemotherapy
Isla was second on the list for IAC on Thursday. A child from Sydney was having the same procedure in the morning. I believe Melbourne is the only place in Australia where IAC for retinoblastoma is carried out.
We arrived at the medical imaging department at 12noon and Isla was admitted. Nurses completed their paperwork and Isla’s obs and we waited for quite a while before she went in. Sandra, the retinoblastoma care coordinator, waited with us the entire time, which she really didn’t have to do; I don’t think she is even supposed to be at the hospital on Thursdays. It was definitely comforting to have her there, to have a familiar face, an advocate for us in a new department to us, during a new procedure.
After meeting the anaesthetist and radiologist who would be doing the procedure we went for a walk to get something to eat. We were told it could take up to 4+hrs, but that is very variable depending on how easy/difficult it is to get into Isla’s artery. Sandra was in the procedure with Isla and she kept us informed of the progress. She called probably about 2 hours after Isla had gone in, to let us know they had successfully got into the ophthalmic artery and were starting the chemo infusion. We were so relieved and made our way back to the hospital and met Sandra in the waiting room. The radiologist came out once he had finished to let us know it all went well. He said she had good anatomy for the procedure and he got into the artery easily, so that was great to know. Sandra waited with us until the recovery nurses took us through to Isla.
While we were out we had bought a couple bottles of wine to give Sandra and James (ophthalmologist) as a thank you/xmas present. Sandra said she would put Isla’s name on hers and put it away. Any wine she gets from families, she keeps until the child has finished their treatment and she celebrates the end of that child’s treatment with the bottle of wine.
Isla woke up well and we gave her some milk and food and waited to be transferred to a ward. James came to see us on the ward to say that everything went well and to confirm the plan for next month. I stayed on the ward with Isla overnight and Garreth went back to Ronald McDonald house. The nurses were very lenient on the ‘visiting hours’ though and Garreth stayed until about 10pm. Isla slept well overnight and only woke once. The nurses weren’t going to wake her for obs, but took the opportunity when she woke up, which was great.
We were discharged in the morning and we had some lunch at the hospital before heading to the airport. Our plane was delayed a little, but we decided to just go to the airport anyway and wait there rather than waiting at the hospital and changing our taxi booking. However, our plane ended up being even more delayed and we waited in the airport for about 3 hours before boarding our plane home. Luckily Isla was able to sleep on Garreth’s lap for a while.
© Alison Davey 2021