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Anniversaries, they’re a special skill

Jan27
by Jo Tann on January 27, 2022 at 1:26 pm
Posted In: Personal

It’s hard to believe that the last update here was about Alex’s birthday, and now here we are starting a new year. Tempus really does fugit.

We have in the past made mention several times of Alex’s uncanny ability to have medical emergencies/hospital visits on significant dates, the very first one he ever had was January 3rd 2013. We figure he was aiming for my birthday but missed since it was his first attempt 😀.
Well, this year we have been given proof that aiming at anniversaries is a skill possessed not only by Alex.
On the 3rd of January 2022, 9 years to the day of Alex’s initial diagnosis, Jenny woke up with a tummy ache.
She was feeling off all day, refunding a bit of dry toast and not wanting to eat anything else, but perking up after some Nurofen. Once it wore off she faded and went for a nap, waking at around 3.30 in significant pain, she was curled up unable to stretch out, and her tummy ache had become a specific point of pain on her lower right side.
Phil and I, being somewhat semi-pro at this by now, exchanged a look and went to pack an overnight bag and we were in the Women’s and Children’s hospital and into an ED room by 6 pm.

Due to current conditions, the first order of business was a covid test for Jenny, then obs, a wee sample to rule out a UTI, and a blob of numbing cream on her elbow to prepare for a cannula. Because the PCR covid test results take time to come back until she’d had a negative result, everyone who entered Jenny’s room had to get fully gowned up in full PPE, and we weren’t allowed to leave the room.

We saw Dr Rachel at 7.50 pm for a quick exam and she decided an ultrasound was in order, and by 8.45 pm the cannula was in and the ultrasound was done. The ultrasound tech left the room saying ‘I think we’ve found what’s wrong but I can’t officially tell you’ which I took to mean Jenny had appendicitis. At 9 pm A large angry appendix was officially confirmed, but because of covid, unless it’s a “right now emergency” the hospital has to wait for a negative covid test before they can take a patient into surgery.

The staff said the tests usually take around 12 hours to come back, so Jenny would be fasted from 2 am with surgery hopefully around 8 am the following morning, provided that she stayed stable. In order to try and maintain said stability Nurse Sophie hooked up tasocin – which is a really really powerful antibiotic – at 10 pm and Dr Cherryl came in at 10.30 pm to run through what would happen next.

After a short rundown on laparoscopic surgery and risks associated with anaesthesia and surgery, I asked about what might have caused this, and the answer was surprising. The most common cause of appendicitis in kids is apparently poo stones – fecaliths to give them their proper name (if you want to get super technical ones which form in the appendix are called appendicoliths). They are similar in nature to kidney stones only they aren’t caused by poor diet or lack of water, they are just a thing that happens. They get bigger over time and can block the entrance to the appendix causing appendicitis. With a diagnosis in place, we were moved from ED to a four-bed bay in Newland ward at 11.45 pm and settled into bed around 12.30 am.

I was woken at 3.30 am and told that we had to be moved into a single enclosed room over on Kate Hill ward. Someone, somewhere, hadn’t been told Jenny’s covid test was still pending and so we were put into the ward. At 3.25 am presumably the same someone had realised there was no negative test on file and so we had to be put into isolation until her covid results come back. At 3.30AM.

Jenny had more tasocin at 5.30 am and at 8.30 am we spoke to the anaesthetist, but we were still waiting for a negative test. We were told that once the test came back then they would find a slot on the emergency list for her. Finally, after the staff called to chase them, at 1.30 pm Jenny’s test came back negative. She was taken to surgery at 2.50 pm and was asleep by 3.30.

Pre surgery
Post surgery

I was then told we had to move again! No more cushy single room now they knew she was negative, and back off to a four bed ward I went to wait for Jenny’s return. At 4.15 pm I got a call from Ben the surgeon, everything was all done – textbook smooth. She would have to have one more dose of antibiotics, then home the following morning.

Jenny came back up around 4.30 pm still pretty woozy, but after a bit of a snooze she decided she was hungry – unsurprisingly given the last meal she’d had was dinner two days before. After a pot and a half of jelly, 2 cups of apple juice, a slice of Vegemite toast, 2 cups of milk, a final dose of tasocin and a LOT of ABC kids she fell asleep at 9.30 pm.

We were both up at 6.30 am, and surgeon Ben came around to visit at 7 am. He said everything looked great, he wanted the nurses to change the dressing and then we would be good to go home. Post-surgery he said Jenny needed to take it easy for a week or so then can start getting back to normal – no swimming for a week or so but she could shower. Dressings could be removed after a week, and as all the stitches were internal and dissolvable there was no need to come back in.

So on the 5th of January at 11 am Phil and Alex came and picked us up and we went home until the next time.

The next time was just under two weeks later, the 18th of January, but thankfully not for an emergency – Alex’s scheduled 3 monthly MRI. We were on the morning list – 7 am presentation at DOSA, but when we got there we found the door closed. A notice told us to go around to the recovery side, where you usually end up once your procedure is done.

DOSA has essentially been shut down during the current covid situation, only essential procedures are going ahead, so everyone is put in their own bay while they are waiting, rather than all seated together in the regular waiting room.

Checking in with the nurse we discovered that anyone going through DOSA was supposed to have had a covid test within the last 72 hours. As that memo had somehow missed us, Alex had to have an on the spot RAT test before he could have the scan. We got the test done easily enough – he wasn’t happy, the throat swab made him gag and the nose swab apparently hurt, but it was done and we settled in to wait. One good thing was that since we were in the recovery ward side of DOSA and in a bay there was a TV over the bed! Alex passed a happy few hours listening to ABC kids and we were called down to imaging at 11.15.

Alex had a lovely chat with his old friends Lea and Carolyn in the MRI waiting room and at 11.40 after a rousing rendition of the rainbow song with Dr Rowan I headed off to get some scripts from the endocrine department and to grab some lunch.

9 times out of 10 Alex waking up from anaesthesia is a fairly easy process, he tends to be a bit grouchy for a time, but leave him alone for a bit and he will come back to his usual self after half an hour or so. This wake up was number 10. I got called into recovery, where particularly now, parents are seldom invited.

I could hear Alex yelling from down the corridor, he was not a happy camper!

He refused to put his hearing aids on and was laser-focused on getting the canula out, but he HAD to do it himself. He was actually re-wrapping then unwrapping the bandage on his hand as the nurse who was trying to help had undone it for him. “I want to do it!” was yelled out at top volume more than once. He ended up with the bandage off and then started on the Tegaderm patch which was holding the cannula in place. All attempts at assistance were met with furious yelling and hand swiping, and he did end up pulling out the cannula himself – which the nurse wasn’t quite ready for but caught amazingly well.

I’d been trying to get him to put on his hearing aids but he kept shoving them away, only to two minutes later start shouting “oh no I can’t have my hearing aids!” He did eventually put them on and we headed back to DOSA recovery.
Many cuddles later he started to calm down, and I eventually got out of him what the problem was. Turns out he was upset about smelling the colours being over and he wanted to go back in and do it again.

He soon perked up and came back to his normal self pretty quickly after that, he had milk and all the chocolate treats that I’d brought with me but decided that he wanted to have his lunch at home. Dessert first right?

Nurse Taylor signed us out and Phil and Jenny came to pick us up.

Watching Peppa Pig with Jenny after coming home from his MRI

We got home and all was well, but I got a call that afternoon from an oncology doctor – Dr Rachel – they had seen a shadow on his lungs in the scan and were calling to check to see if he’d had any respiratory issues – which he hadn’t. She said they would do a thorough check of the scan to try and determine what the shadow was. Understandably with the scan only being done that day they didn’t have the results for us, but we had an appointment for Thursday for a checkup and she said they would let us know the findings then.

Phil took Alex in for his Thursday appointments, first for a lucarin injection with Nurse Kate, then an echocardiogram and ECG with David, who said everything was looking good, and then an oncology checkup with Dr Daniel.

The injection was tough to get through, especially as I was on the other end of the phone and not really able to do much, but everything else went smoothly. The shadow on his lungs turned out not to be a cause for concern – his lungs had partially collapsed under the anaesthesia, but apparently, this is normal(!)
We were also given the scan results, in official speak:”sustained reduction in size as compared with January last year, but no significant reduction compared to the last scan”
This essentially means that there’s been no tumour growth since the last scan, but no visible reduction either, so I suspect the next checkup will include a chat about increasing the medication dosage.

I sincerely hope that everyone else’s start to the year was significantly less hospital filled (and will continue to be so!) and wish you all a happy and healthy 2022.

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🎵Happy Birthday to youuuuu’re having an MRI!

Nov03
by Jo Tann on November 3, 2021 at 9:48 am
Posted In: Personal

Alex has long had a habit of medical happenings on significant dates and his latest hit was on his own birthday.
He needs regular eye exams at the moment (ironic I know) because the chemo medication he’s on can have an impact on the eyes. The first symptom is visual disturbance – obviously Alex can’t tell us if this happens so we’re having regular checkups.

When booking his eye test, the only time they had available that also worked for us was at 9.30 on the 12th of October, so we thought ‘it’s only a quick appointment, maybe we can give him the day off (normally after a 9.30 appointment we take him to school afterwards) and go into town for a birthday treat.

Shortly thereafter we received a letter telling us Alex’s MRI date was, you guessed it, 12th of October, 11am presentation to DOSA. MRI day is always a long day, you have to be in DOSA for 2 hours prior to your procedure, the scan Alex has takes 90 minutes, he takes 45 minutes or so to come back to himself after the anaesthesia, and you have to spend at least 30 minutes in day surg recovery and have something to eat before you can leave. An 11 am presentation means we aren’t likely to be done until 5 pm at the earliest if Alex is first on the list. If he isn’t first then we are looking at 6 pm or later. Now add to all this the eye appointment at 9.30 am and we were looking at a very very long day.

We gave Alex his gifts in the morning before we had to leave for the hospital.


We dropped Jenny off to school, then Phil dropped Alex and I off at the hospital at 9.15am.
The ophthalmic outpatients were a running a little late, but everything went smoothly, nothing abnormal in the exam and we were left with 50 minutes to kill before heading up to DOSA.

Alex decided he wanted to visit the Starlight Room and there was a very nice Captain Starlight on duty, who managed to insert, I think, around 10 words into their 45 minute conversation.

At 11 am we headed up to DOSA, Mary the play therapist was on holiday but the lovely Lauren more than filled her shoes! We did all the paperwork and settled in to wait. We were unlucky – Alex was second on the list. This meant he wouldn’t be headed to imaging until at least 2.30 pm.

We were called down to the imaging at 2.40 pm, did the final bits of paperwork and headed in the MRI suite. The last time he had a scan, the nursing staff had found a youtube video of the rainbow song for us to sing along to. This time everyone had a song sheet with the lyrics on it 😀 You have to love the staff at WCH – they always go above and beyond. ❤️

Alex went to sleep once we had finished singing and I headed for a quick lunch and then to visit a friend who was in the maternity wing. Laura and I had a lovely chat – she is/was carrying twins and was in hospital until she reached the magic 30 week mark.

At 4 pm I headed back to day surg recovery and waited for Alex’s return which turned out to be at 4.30 pm. I gave him his chemo tablet and then left him to slowly come back to himself, his shunt had been reset while he was still sleeping thankfully so we didn’t have to worry about getting that done while he was cranky. He had his ‘lunch’ at 5.30 pm, Phil and Jenny turned up at 5.50 pm, his canula was removed and we were discharged and we were in the car heading home at 6.15 pm.

Like I said. Long day.

I had harboured some hope of being home in time to make Alex his birthday cake but by the time we got out of the hospital, it was clear that cake making wasn’t going to be happening. So we stopped on the way home and picked up one of Alex’s favourite treats – Krispy Kreme original glazed donuts.


Not a conventional birthday, but Alex loves ‘smelling the colours’ as he puts it, so the MRI being on his birthday was more in the nature of an amazing treat as far as he was concerned, rather than the nightmare the rest of us would consider it.

The results came a week later – All lesions are stable, no growth has been noted, but there was no tumour shrinkage either. These results, while not as amazing as the previous two scans, are still positive. The two drugs have halted tumour progression, and Dr Beck thinks that these results are due to dosage. Dosage is dependant on weight, but you also have to work with the doses that the drugs come in. To use easy numbers, say the drugs come in either 5mg or 10mg, but by weight, Alex should have a dose of 7mg but he’s on the 5mg tablets. Dr Beck is going to look into adjusting the dosage next month, so fingers crossed the tumour shrinkage will continue if he’s put on a slightly higher dose.

Alex’s medication was sent out to us this month, instead of collecting it from the oncology pharmacy. It arrived with an invoice from the hospital for the whopping sum of $6.50. Curiosity got the better of me and I did a little bit of Googling, and I was suddenly very grateful that we live in Australia and have access to public healthcare.
Alex is swallowing approximately $20,000 a month! He’s been on treatment since February – that’s roughly $180,000 he’s already had, and the oncology team at the hospital have said initially they expect him to be on treatment for at least 24 months. 😲

With the year drawing to a close and Christmas nearly upon us, I’m reflecting on our last 12 months or so, and I’m endlessly grateful for all that’s happened. Given that this includes Alex’s re-diagnosis this might be an odd sentiment on first blush, but it’s the hard times that make you really appreciate what you have. It’s a reminder for us to always love and be patient with our kids, no matter how mad they drive us because nothing is promised (that and the fact that they are both pretty amazing kiddos).

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Alex the Magician

Aug11
by Jo Tann on August 11, 2021 at 3:59 pm
Posted In: Personal, Uncategorized

After the spectacular results of Alex’s last MRI I was a bit nervous for his next one. Worried that the temperature he spiked after the last one wasn’t some random virus exposure and was in fact somehow related to his treatment. Worried that the amazing results from last time wouldn’t be repeated. Worried that somehow the news would not be good.

You never really loose that fear of getting results. In the months separating the scans you can pretend that everything is normal and fine. It’s when you have to listen to empirical evidence that there is something inside your child that shouldn’t be there that you have to confront the unsettling reality that there really is a battle being fought. Even if you’re winning it’s a hard thing to do.

We had an MRI scheduled for mid August, but Alex’s oncologist Dr Beck was trying to get it brought forward as she wanted a 3 month gap between scans rather than 4 month gap. By the start of July we hadn’t heard anything so I assumed since we were so close to originally scheduled date that there weren’t any spots and we would just be going in August.
Then I received a phone call on Wednesday the 14th of July from the lovely Roberto from the imaging admin team. A spot on the MRI list for Friday was possibly going to be available (unfortunately due to someone else’s illness) could we make it? I said we could, the spot was confirmed available on Thursday and we headed in for an MRI on Friday. At the time I was a little surprised that they had bothered – Alex’s original MRI date was only a few weeks off, it wasn’t that long to wait. In hindsight and with the knowledge of the events that have occurred since, I’m glad we were moved forward – had Alex’s MRI still been scheduled for the original date it would no doubt have been cancelled due to the covid outbreak and and subsequent lockdown.

Friday was an 11am admission to DOSA so we were faced with the tablet timing problem again. This time I tried to think ahead though and called the wonderful oncology pharmacist Hayley to ask if it would be appropriate to bring his tablet time forwards slightly. I thought if he took his tablet just before having the scan, the fasting time would be over by the time the scan was done, and he could eat and leave recovery after waking up. Hayley confirmed this was ok, and for the first time in a long time a plan actually went to plan!
As some of you may already know Alex has a particular routine when it comes to anaesthesia, he puts the mask on, lists the colours he can smell then we sing the rainbow song. This time one of the nurses raised the bar somewhat as, while we all gathered around to sing, she found a youtube clip of the song to play, so Alex not only had 6 people singing, they also had backing music to perform to.

The scan took the usual 90 minutes, and his progress through from unconscious, to conscious, to grumpy bridge troll, to recognisable human took the usual amount of time. He had his shunt reprogrammed, had his usual lunch of savoury bites and other snacks, and this time we left the hospital with no temperature spikes or car issues.
Alex’s night didn’t stop there however, since the scan was at short notice we had made plans for the evening to visit Phil’s parents for a family dinner, Phil had dropped Jenny off there prior to coming to get us and when we arrived Jenny and her 2 cousins were on Grandma’s Wii playing bowling. We convinced Alex to have a go, and after a bit of a rough start learning how to coordinate his movements with button pushes, he had an absolute blast. His enjoyment largely stemmed from the discovery that he was utterly amazing at Wii bowling. You might be tempted to think that his opponent in the bowling game was taking it easy, letting him win, and that may have been true of the first game or two, but when he started beating everyone he was up against, the metaphorical gloves came off. He played game after game against 4 other, fully sighted people and ended up winning almost all of them, his best score a 167.

As far as MRI days go, not a bad one.

Then the covid outbreak hit SA, and a lockdown was initiated. Hospitals at this point obviously had more pressing matters to deal with than sending out test results, and since Phil was at one of the sites in a listed exposure time (which was subsequently revised and it turned out he wasn’t, but we had a tense few days) we had a few other things on our minds too.

Things have slowly gone back to normal and it was last week that we realised we hadn’t heard from Dr Beck, so on Friday (the 6th of August) we rang through to the Michael Rice Center. We left a message for a call back and 6.30pm that night my phone rang (never let it be said doctors don’t work hard!). Dr Beck gave us the amazing news that Alex was a magician – of the lesions that were under observation, two couldn’t be seen at all on this scan, and the others had all shrunk.

Best News Ever.

Alex is tolerating this treatment really well, he’s experiencing minimal side effects and it’s clearly working well, so despite the lockdown and restrictions we are in a really good place right now.

In slightly sadder news, because of the lockdown and higher level restrictions Jenny’s musical theatre performance had to be cancelled. She was obviously pretty disappointed, but we are hopeful that when social distancing restrictions ease they might be able to reschedule it.

Alex and his second slice of cake at Auntie Amy’s birthday party

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