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).
