We returned to Melbourne on the 19th of June to attempt intra arterial chemo (IAC) again. The normal retinoblastoma EUA list is run every 4 weeks on a Wednesday. I started part time work again in May, working a five-day fortnight (Monday, Tuesday and every second Friday) ensuring the EUAs always fell on my 2-day weeks. However, the intra-arterial schedule doesn't always align with the EUA list and requires us to stay in Melbourne from Wednesday-Friday. So that meant I lost a few sick days and it was a bit of a pity that intra-arterial started again just as I had returned to work, but never mind.
We flew over Wednesday morning and met with the oncologist that afternoon. We had a few hours to kill when we arrived, so we took Isla to the zoo again. After the appointment with the oncologist we walked into the city and had some dinner in town. We had accommodation at Ronald McDonald house and we went back there after dinner.
Isla was on the morning list, so we arrived at the medical imaging department at 7am. Once anaesthetised, the eye team would do the usual EUA before the radiologists started the IAC. When Isla went in, we went to grab a coffee and something to eat before coming back to speak to the opthalmologist after the EUA. There were no new tumours this month and the tumour found and cryoed last month was now inert. The main tumour has grown a little more since last month, so it is definitely time to try getting some more chemo in there. This was the first time (I believe, in Australia) they have attempted intra-arterial chemotherapy using the posterior route.
We left the hospital at about 9am and went for a walk while they attempted the IAC. I received a text message from Sandra (orthoptist/retinoblastoma care co-ordinator) at 10.37am letting us know that they had successfully catheterised the ophthalmic artery and were about to start infusing the two chemo drugs. They had only used one (the most successful) chemo drug previously, but there is another drug which is sometimes used, with weaker results. However, due to the difficulty of getting into Isla’s artery they had decided that if they do manage to get in again they are going to give the tumour everything they can. After receiving that news, Garreth and I had a little cry in the street and then started to head back to the hospital. Sandra met us in the waiting room and we waited until Isla was ready for us in recovery. We saw the two radiologists walk out of the angio suite looking like they were on cloud 9, which was pretty exciting for us to see too. We went through to see Isla in recovery and once she was well enough to leave we were admitted to the ward and got her settled in for the night.
Garreth stayed the night with her in hospital and I went back to Ronald McDonald house that evening. I returned to the hospital in the morning and waited with Garreth and Isla until we were discharged. We managed to get discharged quite early and our flights were booked for the afternoon, so we took Isla for another sneaky visit to the zoo before we had to leave for the airport Friday afternoon.
Since we were unsure how the intra arterial chemo would affect Isla’s immunity (it affects all people differently) we decided to keep her out of childcare and stop swimming lessons for a few months to be safe. Garreth and I both had a few days off work and we had a lot of help from family and friends during this time, looking after Isla on days that I had to work. Isla had blood tests done and her white blood count did drop a little, but not to dangerous levels, so her risk of serious illness wasn’t too high.
Unfortunately, we did discover the hard way that the maximum amount of time you can spend out of childcare before Centrelink rip away your subsidy is 8 weeks. It just so happened that we had Isla out of childcare for exactly 8 weeks, for which we were required to pay full childcare fees with no government subsidy. Both the childcare centre and I attempted explaining the situation to Centrelink to no avail. Fortunately, childcare accepted responsibility that they should have known this rule and been able to work around it and agreed to wear most of the cost meaning we ended up only being about an extra $250 out of pocket.
© Alison Davey 2021