This month was an interesting one and VERY VERY stressful!! We were due back in Melbourne for Isla’s next EUA on Wednesday the 1st of April. As we are all aware the coronavirus started to really impact Australia in late March. Australian borders were closed to non-residents on March 20 and social distancing rules kicked in on March 21. In the weeks leading up to Isla’s EUA we had a lot of correspondence with the team in Melbourne. Victorian public hospitals were directed to wind back all non-urgent surgery from March 25. While examinations under GA for kids with retionoblastoma isn’t ‘emergency surgery’, it’s also not really ‘elective’ and if postponed can have serious detrimental effects on the kids. The eye team had to work through their list to work out which kids definitely needed their EUA on April 1 and which were probably safer staying at home and safe enough to wait/skip an EUA. Isla was a bit of a borderline case as we had been pushed out to 2 monthly visits, but then the new tumour in February brought us back to monthly. However the Dr did mention last month that if the next EUA looked ok we might be able to stretch it out again.
So a lot of options were weighed up; there was a possibility that the April EUA would still be going ahead in Melbourne, there was a possibility that it would be cancelled and they were also considering getting a local ophthalmologist to perform her EUA here in Adelaide. The Adelaide ophthalmologist who would perform her EUA is not trained to treat retinoblastoma, only to examine her eyes under GA and take photos of the retina, which can then be reviewed by the team in Melbourne. It was suggested that if Isla did need any treatment at that time, they would have to find the most suitable Dr to be able to perform the laser or cryotherapy who perhaps does the procedure for other eye conditions, but who has not treated retinoblastoma before. While having the EUA in Adelaide was obviously logistically an easier option, it wasn’t one that we were feeling super comfortable with. Fortunately, the Melbourne team decided that they did still want to see Isla over there. Since she did have that new tumour in February they thought it would be best to have her in Melbourne so that she can receive the best treatment should any new tumours appear in April. They also thought that while it is still possible to travel during the coronavirus crisis, it was probably best to do so now as we don’t know if things will be better or worse in 1 month’s time.
So flights were booked for Garreth and Isla to travel to Melbourne. Only 1 parent could attend the hospital with Isla, and being 24 weeks pregnant, we thought it would be best if I stayed at home. It was also decided that we would get accommodation outside of the hospital where we don’t have to use a shared kitchen and facilities with other families, so we booked the Mecure Hotel across the road from the hospital. Since many flights were starting to be cancelled and air travel was a little uncertain, flights were booked for Tuesday evening 31 March, instead of Wednesday morning like normal. Just in case the flight was cancelled, it would give us time to be moved to an alternative flight or even drive if we had to.
On the 22nd of March, 1 week before Isla’s EUA, South Australia closed the borders. This meant we might now have to self-isolate for 2 weeks upon returning from Melbourne. So that raised the question about who should travel with Isla. I work less, so maybe it would be easier for me to self isolate with her so Garreth could continue to work. Would we have to isolate in a hotel or could we still be in the same house as Garreth if he wasn’t isolating? Does a medical exemption mean you are exempt from isolating or does it simply allow you to cross the border? We had heard about plenty of other people still travelling for work (not urgent services) who were able to travel freely across the border without isolating and we knew FIFO workers were still able to come and go. So we assumed a ‘medical exemption’ would mean we would also be exempt from self-isolating.
After several phone calls and emails to SA health, the coronavirus hotline, the police and both the Women’s and Children’s and the Royal Children’s Hospitals we were still none the wiser. We wanted to know;
1. Whether a ‘medical exemption’ meant you were exempt from self-isolating?
2. What self-isolation meant for the other person living in the same house as two people who were self isolating?
3. How do you apply for a medical exemption? Is there a form? If not, what paperwork do we need from whom to prove that we are required to travel for medical purposes?
We were hoping to have some clear answers so we could decide for sure whether it should be me or Garreth who travels with Isla, and obviously to plan for self-isolation and make sure we had the appropriate documentation for checking at the border/airport.
All we managed to find out was that
· There was no specific form for a medical exemption (we knew there was for Tasmania, as a Tasmanian family was going through the same thing to be in Melbourne on the same day).
· We just needed to have ‘as much documentation from the hospitals as possible’ to prove that we were required to travel for a medical appointment.
· The person who didn’t travel would still be allowed to live in the same house and would be able to come and go for work/shopping/appointments etc.
From what we could gather, the decision as to whether or not you would have to self-isolate was made on a case-by-case basis. It sounded like the police officer we come across on the day would make the decision based on where you had been, how many people were on the same flight as you and what their risk was like etc. So we were thinking that if we had flown to Melbourne and been to a hospital and back with not many other people on the plane who were high risk, perhaps we wouldn’t have to self isolate. However, there seemed to be no clear answer to this.
Garreth had a bit of annual leave booked around Easter anyway, and as I am pregnant and had an obstetrician appointment booked for the day after Isla’s procedure, we decided it would be safer for Garreth to go with Isla whether self-isolation was likely or not. I had planned to do some shopping the day they were gone to stock up on groceries in case we/they had to self isolate when they returned.
My obstetrician appointment turned into a phone consult the day before Garreth and Isla were due to fly out, so the appointment the next day was no longer an issue. However, my obstetrician told me that she didn’t want me working in healthcare during the coronavirus crisis and I should be ‘working from home’. Obviously, that’s not really possible for a radiographer. My hours had just been cut at work from 5 days to 3 days/fortnight anyway as we'd had a significant drop in bookings due to the coronavirus. I was due to work a short day on the day Garreth and Isla were flying out, but I received a text that morning asking me to take that day as my day of leave without pay for the week (as we had all been asked to do).
Garreth and Isla’s flight with Qantas was scheduled for 6:40pm Tuesday the 31st of March. We had planned to head to the airport at about 5pm. At 4pm my phone buzzed with the story of 6 Qantas baggage handlers at Adelaide airport testing positive to coronavirus. The next hour was a frantic mess of trying to decide what the hell we should do! We called both the WCH in Adelaide and Sandra from Melbourne to see if we should still even be flying. We left messages for both of them. We decided to leave the stroller at home to have 1 less thing for the baggage handlers to touch. Garreth tried wrapping his suitcase in plastic package wrap, packing gloves in his backpack with the thought of using gloves to unwrap his suitcase when he picked it up in Melbourne. We had almost enough plastic to cover it, but it ran out. Glad-wrap didn’t do the trick! Meanwhile, while trying to keep a toddler entertained, I started throwing things in a bag in case we had to drive and I had to come too. While still waiting for a phone call back from Sandra, we had to leave for the airport if we wanted to make the flight (which we didn’t know whether or not we did!). We thought we would go to the airport and make a decision from there. Sandra called back while we were at the airport and said if we feel more comfortable driving to do that.
When we arrived at the airport and there were a lot of people standing around and a few news reporters there, obviously due to the baggage handler’s story. There were police around who I assume were there to enforce the border restrictions. Garreth tried to check in, but the flight had been cancelled. This was kind of a relief, as Qantas were obviously taking it seriously and we didn’t have to worry that our suitcase wasn’t wrapped in plastic. Qantas were still working out what to do and Garreth was asked to wait while they worked out whether there would still be a flight that night or in the morning. At one stage there was talk of a flight that night with no bags and luggage would be delivered the next morning. They were trying to get another plane and crew in from Melbourne for a flight later that evening. We waited at the airport for over an hour for a decision to be made. I waited outside with Isla while Garreth waited at the information desk inside. I spoke to Sandra a couple of times while we were waiting as she had heard that our flight had been cancelled. There were only so many times that Isla was happy to walk up and down the path looking at the garden and the birds without touching anything! A couple who were sitting on a seat outside the airport eventually left and I sat there with Isla. Of course she eventually started climbing all over it and lying all over the seat, which made me nervous as I just wanted her to not touch anything!!
Eventually Garreth was told there wouldn’t be a flight that evening and it was unlikely that he would be able to get on a flight the following morning. Isla was due to be admitted to the Royal Children’s at 1pm the next day, so we had no choice but to drive. Driving 8hrs with a toddler isn’t fun at the best of times and there was no way Garreth was going to do that alone in the middle of the night after the few days we had just had, so we decided that I would come as well. We raced home and I threw the rest of my things together and we chucked everything in the car, stocked the dog up with food and water, changed Isla’s clothes and washed her hands as I was paranoid about her rubbing herself all over the seat at the airport, jumped in the car and headed to Melbourne just before 7:30pm.
We weren’t sure what to expect at the border and didn’t know whether we would be stopped on the way into Victoria or just when coming back to SA. Our oncologist from Adelaide was going to be emailing a letter explaining that we needed to travel for an appointment, in case we needed something from her to cross the border into Victoria. She told Garreth she would try to get that to us by about 7:30-8pm. We were ½hr outside of Bordertown when that email eventually came through. Fortunately we didn’t need any paperwork to cross into Victoria and we weren’t stopped at all coming that way. We saw the road block on the other side of the road, but it looked pretty relaxed, so we thought we might be in luck and able to come back into SA pretty easily.
Isla was really good in the car and luckily slept most of the way. She was awake for about the last two hours (turns out, probably because her pj’s were wet as her nappy had leaked), but she just chatted to herself and looked around.
We arrived at our hotel at about 4.15am. Sandra had asked me to text her when we arrived safely. She said she would have her phone on silent, but if she woke up in the night she could check her phone and that would be one less thing to worry about. So I text to let her know we had arrived safely, and of course she sent a reply back straight away. We went to bed and I set my alarm for 7am to give Isla some breakfast before she had to start fasting. We had a cot in the hotel, but Isla wanted to sleep in bed with me, so we shared a bed and let Garreth get some sleep in the other bed.
I woke up in the morning and got Isla some breakfast and tried to keep her quiet so Garreth could sleep a little more. When he woke up, we went out for a walk and got a coffee and some fresh air, which helped us wake up a little more. We headed back to our room and Garreth tried to get a little more rest before he had to take Isla across to the hospital. We left for the hospital a little early so we could go for a bit of a walk and hopefully Isla might fall asleep in the pram, which she did. I came for a walk too, but when it was time to go in, I went back to the hotel and Garreth took Isla into the hospital.
There was coronavirus screening at the door to the hospital and again as you enter the day surgery admissions desk. They managed to take Isla’s temperature at the door without disturbing her and they just let her sleep at the admissions desk. The day ran a little bit differently to usual and Garreth and Isla were given their own consult room to wait in, to allow Isla to sleep a little more. Once she woke up they moved out into a bed bay and the nurses did their obs and eye drops. Due to the coronavirus nurses were fully gowned up to administer eye drops, which threw Isla a little as she isn’t used to seeing the nurses dressed like that (gown, gloves & mask). The anaesthetist tried a different pre med this time, a nasal spray, which seemed to work much better than the previous attempts at a pre med.
Dr James Elder wasn’t even in theatre that day as they were keeping the two eye doctors apart. They couldn’t afford for them both to be taken out of action if they were to come in contact with someone with the virus, and/or get it themselves. So Dr John McKenzie was in theatre, while James (along with Sandra) was viewing the images offsite and making all the video calls to parents after the procedures.
Isla went off to sleep quite well with the pre med and Garreth was keeping me up to date while he was waiting for her at the hospital. Everything was a bit slower than usual, but eventually Garreth got called to go meet Isla in recovery. He was with Isla for some time without having heard how it went. I eventually got a text from Sandra around 7pm saying that they had been drowning in meetings all day and that they would call me soon. I got the text for a video link at 7.15pm. They didn't know that Garreth and I weren’t together yet and we weren't sure how to add an extra person to the video chat once it had begun, so I just chatted with them alone.
James confirmed that there were no new tumours and everything was looking stable. He mentioned that we would probably do an EUA in Adelaide next month with a local paediatric ophthalmologist, who is not trained in treating retinoblastoma. They’re pretty confident that no treatment will be required and the Adelaide Dr will be able to examine her eyes and take photos for the Melbourne Drs to review. In the unfortunate event that they do find any new tumours at that stage, it will probably mean another quick trip to Melbourne for treatment (which is actually more comforting than another Dr in Adelaide just ‘having a go’ at treating it). We will then need to return to Melbourne in 8 weeks time for another EUA there. Depending on how things are at that time we will likely just plan to drive and stay in the hotel again.
I called Garreth to let him know the plan and he mentioned they should be leaving recovery soon. I ordered some uber eats for dinner and when Isla and Garreth got back to the hotel we had dinner and all went to bed.
It was nice to be able to get a bit of a sleep in the next morning, with no early flight and taxi picking us up. We checked out of the hotel at around 10am, filled up the car with petrol, grabbed a coffee and something to eat and started the long drive home. Isla slept for the first couple of hours and we stopped in Ararat for lunch.
We arrived at Bordertown just after 5pm and spoke to the police officer at the border-crossing checkpoint. He just asked where we had been and where we were heading and didn’t look at ANY of the paperwork we had spent the last week chasing up! A ‘medical exemption’ basically only applies to people travelling INTO SA for a medical appointment, not people RETURNING to SA after a medical appointment. So he said ‘and you’re aware that you now need to self isolate for 14 days?’ ......... ‘Ummmm no!! That’s what we have spent the last 6 days trying to clarify and nobody could give us a straight answer!!’ If it was that cut and dry I don’t know why it was so difficult for someone to tell us that before the fact and not make it seem like it was a case by case basis, and ‘you should be fine’..... I asked him if all the truck drivers we had seen freely crossing the border were required to go home and self isolate for 14 days if they were from SA and he said ‘no, as they are carrying out “essential services” and are exempt’. We explained that there is a chance that we are going to have to do this every 4 weeks, so we could essentially be losing ½ of our lives if we have to self isolate for 2 weeks every 4 weeks. I mentioned that Isla also has an MRI and appointments in Adelaide to attend. He said the ‘medical exemption’ means we would be able to leave the house within those 14 days to go to an appointment IN SA if required, but apart from that, we still have to self isolate every time we cross the border back into SA.
So that was pretty stressful, as we had basically been given the impression that a medical exemption meant we would be exempt from self-isolating. While it’s not a huge deal if it’s once or even twice, we were more concerned about the bigger picture and the worst case scenario if they did find new tumours in 4 weeks time and we had to return to Melbourne monthly. Having to self-isolate for 2 weeks afterwards wouldn’t be feasible for very long. What happens if Victoria ever close their borders and we had to isolate both ways and basically spend our whole lives in mandatory self isolation for who knows how long? We didn’t want Isla’s treatment to be impacted by the ‘nuisance’ of COVID-19 and be forced to stretch out her examinations longer than necessary just because it wasn’t feasible to keep travelling as often as we needed to. There is a reason they keep checking her eyes every 4 or 8 weeks; to ensure any new tumours are found early when they are easily treated with laser or cryotherapy and don’t get big enough to get out of control and require chemotherapy or enucleation (removal of the eye).
At least the next part of our trip seemed to fly by, as I spent the whole time crying, thinking, planning, working out all the what if’s and what we would do in all the worst case scenarios. Meanwhile I was also concerned about my work and my obstetrician wanting me to be transferred to a ‘safe job’ or working from home, while work were already cutting our hours and cutting costs left right and centre. I was worried that I wouldn’t be able to get all or any of my maternity leave paid, and wondering whether I need to keep working (against my obstetrician’s advice) now as much as I can, while I still can, before the baby comes.
All we could really do was carry on and hope for the best. Hopefully her EUA in Adelaide in 4 weeks time would all be fine and we wouldn’t have to worry about travelling interstate again for another 8 weeks. If things are the same at that stage, at least we will KNOW that we are going to have to self isolate and can be better prepared. From there, we will just have to take it one day at a time and do the best we can to get through what ever situation presents itself. Hopefully COVID restrictions wont last too long and we wont have to keep self isolating too often, as who knows how we will work around that once the baby comes in July.
We eventually arrived home to a bombsite and no food just after 7pm. We were absolutely physically and emotionally exhausted!!! But it sure felt good to be home. Luckily we have the greatest friends in the world and Dot (my friend from work) saved the day by dropping off some home cooked dinner so we didn’t have to order in food again. The next day Zoe (another work friend) did a fruit and veg shop for us and dropped that around in the morning before she started work, along with a couple extra treats that she threw in. Sarah and Caitlin (also work friends) did a big supermarket shop for us and Sarah dropped that around in the afternoon along with her home made meatloaf, which Isla LOVED!! So we just can’t thank those girls enough for that, it really was a lifesaver!!
Woolworths were providing online delivery for a select few at that time, including those in isolation. However, this took a couple of days to sign up for and once activated, it was still really hard to find an available delivery window. I was hoping this would allow us to be a little more self-sufficient with top up shops of milk etc, but any available delivery windows were always 4+ days out from my order date, which was a bit too far to have worked for 2 weeks in isolation. Luckily Zoe was able to do one more little top up shop for us and one more fruit and veggie run. Our neighbour also grabbed a couple of things for us one day and that saw us through our 2 weeks of isolation.
The two weeks of self-isolation actually went really quickly, and other than the inconvenience of not being able to buy food and not being able to work and get paid, it was actually a great two weeks. The weather was lovely and we got a HEAP of stuff done around the house. I think Isla really enjoyed having both of us around for a solid 2 weeks as well. However, we were pretty happy to be able to leave the house again once our self-isolation was over.
© Alison Davey 2021