On the 2nd of May we had our first trip to Melbourne for Isla’s EUA (Examination under anaesthetic). The Melbourne hiccup disrupted our treatment schedule a little as Isla should be receiving chemo every 4 weeks to allow her body time to repair in between treatments.
They like chemo to be done within 24hr hours of the EUA as the treatments work best when received in close succession. Basically because any laser/cryotherapy to the eye causes damage and the body’s response to this damage is to increase blood supply to the area to ‘repair the damage’. In the case of damaging the tumour we want to get the chemo into the blood to actually cause more damage to the area, as a way of targeting the chemo delivery to where it is needed most.
Since Melbourne have quite a few retinoblastoma kids being treated, they actually run a theatre list for retinoblastoma EUAs every 4 weeks. Whereas in Adelaide, we are the only retinoblastoma patient receiving chemo, so the ophthalmologist and oncologist just work together to work out the best dates for Isla’s treatment. So we now need to slot into Melbourne’s EUA list, as it is a now or never kind of situation. Fortunately, Melbourne’s list fell only a few days early for Isla’s treatment schedule anyway. Isla’s next EUA would have been today (Monday 7 May) and it was brought forward to Wednesday 2 May.
They like to give the body 4 weeks to recover from treatment for a pretty good reason......... it usually takes the body 4 weeks to recover!!! So we were having our regular blood tests (red blood cells, white blood cells {neutrophils in particular} and platelets) and crossing our fingers and hoping they all came back to normal in time to have the treatment a little early this month.
Isla’s blood counts were all still low on Monday 23 April. We had a test again on Tuesday 1 May, the day before Melbourne. At this stage, flights were booked, theatre confirmed and Garreth had time off work. On Tuesday Isla’s red blood cells were normal, platelets were high (sometimes happens – body over corrects), but white blood cells were even lower than they were a week ago. Neutrophils (required to fight bacterial infections) were only 0.3. On Monday 23 April her neutrophils were 0.33. To go ahead with chemo, they need to be at least 0.75 I believe, but ideally they would like them to be 1 or above.
At this stage our oncologist didn’t want us to go to Melbourne (however, she thought the EUA theatre list was weekly, not monthly). She wasn’t concerned about the flight or the general anaesthetic, just that she wouldn’t be able to go ahead with chemo on Thursday, as originally planned, with neutrophils that low. After a few phone calls, it was decided that we would still go to Melbourne on Wednesday, and we would come straight back to the WCH on Thursday morning to do bloods again in the hope that her neutrophils had jumped up. However, chemo would probably have to be delayed until Monday 7 May (1 day earlier than it would have been if her EUA was carried out in Adelaide).
With low neutrophils we also have to be careful of where we take Isla as she is more susceptible to infection - i.e. – avoid crowded shopping centres, movie theatres, big steel tubes with 100s of people crammed in like sardines breathing the same air ✈️....... 😕 The hospital gave us some kids face masks for Isla to wear in the airport and on the plane. First of all - kids face masks were still pretty huge on a 4 month old - and second of all, we all know what a 4 month old does with socks on their feet!!!!!!!......... need I say more... 😳 Ah well, we tried. We let the Virgin service desk know about Isla’s immunity and asked if they could place us anywhere with less people around – not that it will have made much difference on a plane. Both flights there and back, they did manage to give us the whole row, so we had a spare seat next to us, which was nice.
We weren’t really sure what we were going to do about getting to and from the airport in Melbourne with a baby. From what I could see no taxi company supplies car seats for babies. They do let you fit your own seat, but we didn’t really fancy the idea of lugging a baby seat around Melbourne. Some of the premium car services do supply children’s seats, but they are very expensive. We thought we might just catch the skybus into the city and then jump on a tram to the hospital. However, the hospital preferred us to get a taxi instead of public transport due to Isla’s immunity. I then discovered that it is not a legal requirement to have a baby in a car seat in a taxi. You can just hold them on your lap. While not ideal, we thought that was going to be our best option, as it’s not too far from the airport to the hospital and we wouldn’t have to go into the city and then back out again.
We were given cab charges for the taxi between the airport and hospital in Melbourne. Flights and accommodation for the three of us was all covered by the hospital, and has been approved for the first year, which is fantastic. Often both parents are covered to go once or twice and then the hospital only pays for the child and one parent, so we are very lucky.
After chatting to our oncologist and social worker on Tuesday about our travel plans, I sensed that our oncologist was not overly excited by the idea of Isla sitting on my lap in a taxi. She said she would get me a name of a taxi company who do supply car seats as they have used them as a family before when travelling to Melbourne. After leaving the hospital both our social worker and oncologist called me to let me know that they have got approval for us to use BubsTaxi (a premium car service who supply baby seats) to travel to and from the hospital in Melbourne and we can use our cab charges to pay for this. So that was fantastic and very lovely of them to organise for us.
So a couple of big days for us, Isla especially. Alarm goes off at 4am on Wednesday to get ready and head to the airport. Arrive in Melbourne, lovely BubsTaxi driver meets us at the airport and takes us to the hospital. I had a number to call Sandra – the Retinoblastoma Care Co-ordinator – in Melbourne when we arrived at the hospital. Sandra came down to meet us and show us around the hospital. It was only about 8 or 9am at this stage and we didn’t need to be at day surgery until 12noon. Our accommodation was a room in the ‘Care by Parent’ (CBP) unit of the hospital. Usually these rooms are not available until 2pm, but our room happened to be free for us to use straight away. Sandra showed us where to get the key, where to find our room and where we need to be at 12 and left us to it.
So we settled in, grabbed a coffee and something to eat and then headed up to day surgery at 12. The theatre process was definitely a lot more streamlined than Adelaide. The retinoblastoma team (always the same team) really is a well-oiled machine. In Adelaide we were told we could go once Isla had been taken into theatre and they would call us once she is out of recovery and awake. In Melbourne they like us to stay there in case they want to speak to us during the procedure. They said they would also come out and chat to us after the procedure, unless they need to have a ‘longer chat’ with us, in which case they will speak to us at the end of the list. So we were directed to the couches to wait while Isla was in theatre. There was a little kitchenette where we could make tea/coffee and a fridge with some sandwiches we could help ourselves too.
Isla was first on the afternoon list. The mum of the last patient on the morning list was sitting on the couches with us and we saw the Drs come out and speak with her and let her know they found nothing new and they will see her again in a couple of months. Then the next couple came to join us on the couch. After a while the doctors came out and spoke with them and again let them know they had found nothing new and they would see them again in a couple of months. So now we started to FREAK OUT!!! Obviously they needed to have a ‘longer talk’ with us and we were going to have to wait until the end of the list. So all of the worst-case scenarios started running through our minds and we started feeling very nervous!
It was getting close to 3pm now and we had organised for my sister to come have a quick coffee with us while we were there, as she lives in Melbourne. My parents were actually over visiting my sister at the time, so my Mum, sister and two nieces were planning on coming in to see us after school pick up. Since we weren’t sure how the timing was going to work out and we now thought we were going to have the ‘long chat’ at the end of the list and this could be hours away, I double checked with the nurse that we were now going to have to wait until the end of the list to speak to the Dr. She reassured me that they would definitely come speak to us when they were done and Isla was still in theatre. (They possibly had 2 theatres running at once and the Drs jumped between the two, which is why it seemed like the other couple ‘jumped the queue’, I’m not sure {April 2021 - Can now confirm this is the case}). About 2 minutes after I’d asked that question, the Drs were out to speak with us..... Phew!!!
The Drs introduced themselves, as this was our first time meeting and we had a brief chat about Isla’s history. Dr James Elder and Dr John McKenzie are the main eye doctors in Melbourne. James is a paediatric & genetic ophthalmologist and John is an ocular oncologist with an interest in paediatrics. They mentioned that things had improved from the report they received from Isla's last EUA. They didn’t actually give us any specifics about the large tumours in her right eye, but just mentioned they are not yet small enough to start any focal therapy on. They said the retina has almost completely flattened out and is back in place (it’s not going to reattach or anything, but it has settled back into its place – which doesn’t really mean anything). We assume the tumours have shrunk a little more, but they didn’t actually give us any specific information regarding their size. They treated the two small tumours in her left eye with laser again. One looked inactive already, they just did a little more laser to be sure. The other still had a little bit of activity, so that one definitely needed some more laser treatment. This time they found NO NEW TUMOURS, which is great news!
They expect that Isla will need monthly EUAs for at least another 12 months (and hopefully less frequently beyond that). So I imagine that means it is quite likely that we keep finding new tumours fairly regularly during the next 12 months. They mentioned that often after chemotherapy stops (the end of July), activity increases a little as the chemo was keeping the tumours at bay. So we will see what happens, hopefully not too many new tumours and they can keep on top of them with laser therapy.
They did also mention the vacuoles (fluid pockets) in the lens of her eye. Our Adelaide ophthalmologist mentioned these to us at the last EUA, but I forgot to include it in the last update. We actually can’t remember which eye these are in. I thought it was the right eye, but I think they are caused by the laser and she has only had laser to the left eye. They are not a huge concern, but we just need to keep an eye on them as they can be early signs of cataract development. If cataracts develop they wont be able to treat her eyes with laser/cryo as you need to be able to see through the lens in order to do so.
Once we had finished speaking with the Drs, Isla was awake (and hungry!) so we went to see her in recovery and give her a feed. Once she calmed down a bit and they were happy with her we went to stage 2 recovery (next bay over), where we only had to stay for about ½ hr before we could leave. By this time my family had arrived so we met them for a coffee. Once my family left we grabbed some dinner and went up to our room. Since the room was part of the hospital all of the PA calls went through our room – visiting hours over, MET call, code blue....... waking Isla up each time, so we thought we might be in for a long night. However, the last one was about 10pm and there was nothing after that. 👍🏻
5am – alarm goes off to get ready to leave the hospital. Cafe downstairs was open – woohoo!!! Coffee and a muffin. The same BubsTaxi driver was at the front door of the hospital to take us back to the airport.
When we arrived back in Adelaide we quickly went home to drop off our stuff and grab the car and went straight to the WCH for a blood test. By the time we got there it was almost 11am. We got bloods taken and went to the cafe to grab something to eat. I then remembered that our oncologist originally said to just come in to get blood taken and go home and they would give us a call. Since then though, we had spoken to a few different people and everyone said something different so we weren’t exactly sure what we were supposed to be doing. Usually it takes about 1hr to get blood results, so after about an hour we wandered back up to the clinic. We didn’t want to go home in case Isla’s counts were back up and we could go ahead with chemo on Thursday as we had originally hoped.
The head nurse came out and said we could go home and one of the doctors would call us for a phone review, as we wouldn’t be able to do chemo on Thursday anyway. I feel like this was just a timing thing as the clinic only runs from 9-5 and it was just getting too late to get her chemo done by 5pm. I’m also not sure how long it takes the pharmacy to actually get her drugs together. It’s a pity because a couple hours later I got a phone call from one of the doctors to say her neutrophils were 2.24! So they were definitely high enough to have gone ahead with chemo on Thursday, but I guess we just ran out of hours in the day.
We started chemo on Friday, so hopefully one day wont make too much difference and it should still be a reasonable amount of time for her body to recover for the next round. So we had a full day at the hospital receiving chemo on Friday. Since she receives her chemo over two days we went back into the ward to get her second lot (just 1 drug over 1hr) on Saturday.
So, back to gloves during nappy changes for a week, a little bit of anti nausea medication and other than that all going well.
We will have weekly blood tests and dressing changes until our next EUA. Hopefully our timing will be a little closer to being in sync with Melbourne next time and everything will run a little more smoothly.
On a brighter note, since Isla is now over 4months old she started solids this weekend, which was a lot of fun......messy, but fun.
Until next time.......
Ali, Garreth & Isla.xxx
© Alison Davey 2021