School holidays? give me a break!

In the weeks since our last post Alex has had 4 ECG’s and 4 Echo cardiograms – all of which showed normal function – fortnightly blood tests and many checkups. We have had oncology, endocrine, and cardiology checkups, ophthalmology and hearing tests, speech therapy and scans. He’s managed a bit of school here and there too.

In theory the school holidays are a wonderful opportunity for you to spend time with your loving and wonderful children, being able to really spend time with them without the constant rush to get to or from school, homework and extra curricular activities.

Everything’s good in theory right? In reality these school holidays became a two week long appointment fest. We do try and limit the amount of time Alex has to miss school for appointments, and one of the easiest ways to do this is to get them scheduled in the school holidays. This time around I had 3 days which were appointment free – all the others had some sort of medical appointment scheduled, the most important one being an MRI scan, 8 weeks into his treatment.

MRI day was the 21st of April, 11am presentation to DOSA. Since it was still school holidays Phil and Jenny dropped Alex and I off at the hospital and then proceeded to town to enjoy a Daddy-Daughter day.
Initially there was nothing out of the ordinary, Alex said hi to Mary the play therapist, and to the nurses we have come to know over the last few years. He was first on the afternoon list, so once all the paperwork was done we settled down to wait for 1pm to roll around.
I had informed the staff that Alex had a 4pm tablet which he had to fast 1 hour before and after taking, the timing was tight but a 1pm start for a 90 minute scan would work out just fine.

If you’ve been reading along with our journey for a while I’m sure you can guess what’s coming next……

We went down to imaging at 1pm, usually there’s only a 10 minute wait in there, but for whatever reason we were waiting in there for an hour. Alex didn’t go into the MRI machine until 2pm. I re-did the maths – 90 minutes meant out of the machine at 3.30, a half an hour to sort of come to himself, tablet at 4… still ok.
At 4pm I still hadn’t been called to recovery, I headed up to the DOSA recovery to wait and at 4.20 I got the call to come to recovery, and ended up back in DOSA recovery at around 5pm.

Alex takes a while, once he has come out of anaesthesia, to come to a point where his willing to put his hearing aids on and talk to you – don’t get me wrong he’s still really grumpy at this point but he will at least communicate. The longer the anaesthesia the longer this process takes. He had been out this time for over 2 hours and was severely disinterested in talking with the outside world.
It took about an hour of coaxing to get him to come out from under blankie and put his hearing aids on. By this time I was faced with a problem. The nurses in DOSA don’t generally like you leaving without the patient having had something to eat but the time was now 5.15pm.
If he ate we would have to wait until 6.30 for his tablet, then 7.30 before he could have tea. I checked with the wonderful DOSA nurse Renee and given the number of times we had done this she was ok with me just giving his tablet and then being able to eat in an hour.
At around 5.50 Alex started to shiver a bit which I put down to low blood sugar, Hayley the oncology pharmacist had told us that the 1 hour fast was the best option but if it was really necessary it could be shortened to 45 minutes. Keep in mind Alex hadn’t eaten since 7am that morning, so I decided it was necessary and gave Alex some chocolate.
We took the canula out, signed the paperwork and left at 6.00pm. Long day done I thought, until I got a message from Phil saying we needed to walk to the car rather than waiting at the door for a pickup. The reason? the car wouldn’t start. It looked like a dead battery, he’d called the RAA and was given an ETA of “roughly an hour”. We called the wonderful and amazing Grandpa with an SOS – thinking the children and I could go home and Phil could follow once the car was sorted. It’s roughly a 30 minute drive from Grandpa’s to the hospital so we sat in the car to wait. I tried to get Alex to eat a little more but he really wasn’t interested and started to shiver a little more. I ended up getting him to sit on my lap in the front seat thinking I’d give him a cuddle and warm him up – his teeth had started to chatter by this point – but he was warm.
The shivering was starting to get worse and I was getting increasingly worried so I rang DOSA recovery and asked Renee if it would be ok to come back up for her to give him a quick check. Thankfully, while the paper paperwork had been done, the computer paperwork hadn’t been, so we were able to go straight back to level 3, instead of going through ED – a fact I was grateful for as I walked past ED and the line out of the door.
Renee checked Alex’s temperature and found it was 38.8 and decided to give the on call doctor a call. When they arrived it was 6.20pm and Alex’s temperature had hit 40.7.

The doctors arrived did a handover with Renee and came to see Alex. After a barrage of questions several sets of obs and an unfortunately difficult canula insertion (Alex was not a fan as he’d only just had one removed and decided he didn’t want to have a bar of another one) panadol was given at 7.40pm and we were admitted.

In the meantime the RAA and Grandpa had both arrived, Jenny went for an impromptu sleep over at Grandma and Grandpa’s house, Phil got a new battery sorted and came upstairs to see us.
Since we had thought we would be home by 5pm we hadn’t brought a spare battery for Alex’s cochlear hearing aid, and since we were staying the night would need pyjamas et al as well. So Phil made a list and went home, packed everything up and headed back in.

Being back upstairs on the Michael Rice ward was a bit surreal, but it was so familiar that it felt almost comforting. Alex was hooked up to a big bag of saline and glucose, had some blood drawn and had a nasal swab, and Phil turned up with all the supplies, and some dinner for me bless him, and the dust settled around 11.30pm.

The next morning Alex had a lovely sleep in and woke around 10am feeling right as rain. We were supposed to have an EEG that day so I asked the nurses to ring down to neurology and let them know we were in – vaguely hopeful that since he was an admitted patient he could be seen in the morning – the nurse who rang was quite surprised to be told by neurology that he didn’t have an appointment since she could see it listed in the computer.
Turns out when I’d rebooked the EEG – the original time wasn’t suitable – whomever had made the change in the main computer system hadn’t put it on the internal run sheet that neurology uses, and the spot had been given to another patient.
Alex and I had both had enough of hospitals by that point so I organised it for the week following.

The only problem now facing us was that Alex’s supply of the chemotherapy drugs was getting very low. The hospital is only able to supply 1 month’s worth at a time and we were down to 3 days supply. Just as we were leaving I was told the drugs had arrived, but needed to be processed into the system. Rather than come back the next day we opted to wait for the 20 minutes it would take to process and then finally, gloriously, we were free!

The 21st was a Wednesday so we figured since the radiology team don’t work Fridays and our oncologist doesn’t work Wednesdays we would probably get the results the following Thursday or Friday.

In a way this has been one of the easier waits for the MRI results, the worst has already happened, the tumors have grown, so that worry is off the table. Alex, at the time of the scan, had only been in treatment for 8 weeks so if there was slight growth or no perceptible change, well, it’s only been 8 weeks. If the tumors have reduced then great.

In the mean time we had an EEG to get through. The last time Alex had an EEG he was 4 and in the end to get it done he required sedation, so I was a bit apprehensive about this one. Turns out having the ECG’s have kind of paved the way a bit – he assigns each sticker an animal and makes the appropriate noise and tells the ultrasonographer all about the animals. Initially he was a bit unhappy but when he figured he could do the same thing with the EEG electrodes it went pretty smoothly.

After we were done Alex decided he needed a donut to feel better, and since I needed a few bits from the Plaza we went and got some Krispy Kreme original glazed donuts, and boy oh boy was he happy!

On Tuesday the 27th at 8pm on our way home from cub scouts we got one of the best phone calls I have had in a long long time. Dr Beck calling with Alex’s MRI results.

As I said, this time I wasn’t particularly on edge about the results, but being told that after 8 weeks of treatment that the tumors had reduced in size was utterly amazing. We weren’t expecting this news – in our conversations with Dr Beck prior to treatment starting she indicated that if the drugs arrested the development of the tumours at the 4 – 6 month mark she would consider that a good result.

We are seeing Dr Beck on the 10th to go over the results properly and, hopefully given his ECG and Echo’s are ok, we will be able to go to monthly visits for blood tests, echo’s, ECG’s and checkups rather than fortnightly.

In Jenny news, at the end of our last post I mentioned she was participating in a Little Mermaid musical. As soon as we told her she could participate she started dancing around the house yelling about how she wanted to be Ariel, to be Ursula, to be King Triton. We sat her down at that point and told her that the musical was for kids in levels 1 to 4. She was in level 1, and she needed to understand that the big parts would probably go the older children who wouldn’t get to participate next year. She would still get to sing, dance and perform and have a really good time, but to not get her heart set on a big part.
When we picked her up from her rehearsal she came running out, waving a sheet of paper over her head and shouting over and over again “I’m Flounder! I’m Flounder!”. Yes folks, Jenny got a role, quite a few lines and a half song solo – which she already knows by heart.
In a way we weren’t surprised, she is a big personality, an amazing singer and a total ham, and I think she’s really going to enjoy herself performing.