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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School holidays? give me a break!

May04
by Jo Tann on May 4, 2021 at 6:19 pm
Posted In: Personal, Uncategorized

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.

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A Big Update and a Unicorn day

Mar12
by Jo Tann on March 12, 2021 at 1:55 pm
Posted In: Personal, Uncategorized

First an apology. We haven’t posted an update since January and so much has happened. Our only excuse is we were too busy adapting to all the changes to find the time to write about them.
So, what has happened? Well, I’m glad you asked….

At the start of February we had a meeting with the lovely Dr Beck. The MRI results had shown one of the tumors was slightly larger, the other was more or less the same, so it looks as though we are dealing with slow growing tumors at this point. As well as giving us the MRI results, the meeting was an education session. The subject matter – drug side effects.
The lovely Hayley from oncology pharmacy came in to give us all the info we needed. Interestingly the two drugs in question – debrafenib and trametanib – when taken together, have fewer side effects than when taken individually. We were told to expect a skin reaction similar to eczema or possibly acne, fatigue, nausea, possible stress on the heart (hence the echo and ECG), and extreme sensitivity to UV, and were recommended to top to toe moisturise twice daily to try and ease any skin symptoms.
It was a lot to process, but as we were told the drugs would most likely have to come from America, and would take, at best, 2 weeks to arrive, we had some time to do that.

In amongst all this we also had a visit with Neurology, strangely Dr Nick didn’t know the Welsh word for red, and all was well at that appointment. Alex had put on a little bit of weight so his dose of Kepra needed to go up a little but that was all the excitement that appointment afforded us. It did give us a little extra entertainment however, as we were leaving Dr Nick called out that next time we needed to know ‘red’ in another language. Unfortunately for him he picked Swahili – the driver of Alex’s taxi to school in the mornings is from Burundi and he has been teaching us a few words. The look on Dr Nick’s face when I rattled off a few phrases in Swahili was priceless 😀
For those of you interested – red in Swahili is ‘nyekundu’.

Later that month we had an endocrine appointment with Dr Jan, who determined that Alex had started on the puberty roller coaster. This in a way was a good thing – we weren’t sure after the radiation therapy that his body would be able to do this on it’s own. In other ways though it was not a positive development. Radiation therapy can have the effect of speeding up puberty – taking only 2 years instead of 4 – and once puberty has finished your growth plates fuse. Since Alex is only 116cm at nearly 12 years old, the fusing of his growth plates is not at all what we want. The solution is a 3 monthly injection of lucrin to pause the roller coaster before it gets going.
A week after we saw Dr Jan we had some fantastic news – oncology had determined that restarting Alex’s growth hormone treatment was ok so on the 17th of February daily injections recommenced!

The drugs arrived on the 25th of Feb and Alex’s treatment started on the 26th. This time around could not be more different from our last chemotherapy experience. The drugs are targeted so there isn’t the collateral damage you see with standard chemo. Alex won’t loose his hair or be imuno-compromised, he doesn’t need a surgically implanted infuser port, and we don’t need to spend weeks living in hospital.
There is a little bit of scheduling involved as the drugs need to be taken on an empty stomach and you can’t eat for an hour after, but we are making it work.

So far (touch wood) Alex’s side effects have been pretty mild. His skin is a touch rougher – similar to if you had a bad case of goosebumps – but there’s no redness or itchiness that we’ve seen. While his morning cocktail consists of 4 tablets, 2 syrups and a spray, plus other tablets during the day, we have all settled into the new routine and at times it’s difficult to remember that he is actually in active treatment.
At other times, like when we have 2 or 3 hospital appointments in a week, not so much. 🙂

Despite all the missed time at school this term, the aim for Alex this year is to try and get him ready for high school. To that end, at the beginning of February we started speech therapy to try and improve his social communication and vocabulary. So far as Alex is concerned this is awesome because Liam (the speech therapist) is giving him lots of fun new word games to play. Those of you who know Alex well will be able to testify how much he enjoys playing his version of scategories or 20 questions, now we have odd one out, I went to the picnic and brought…, would you rather… and many more. Long car journeys are no longer boring!

We also had a nice anniversary – the 23rd of February was 3 years since Alex had his big firefighter day. Big shout out to all the wonderful folks of C shift at Wakefield street! We are really looking forward to the day Covid restrictions lift and we can come visit you with brownies again.

The Unicorn Day.

Wednesday the 10th of March was a day of hospital appointments and tests, but I can honestly say I’ve never experienced a day like it at the hospital before.
The hospital is having some building work done and there is also construction work occurring on the nearby Brougham place which is where I usually park. These two things translate into parking being even more of a nightmare than usual. On the 10th we had a 2pm oncology appointment, a 3pm general medicine appointment for both Alex and Jenny and Alex needed to have a blood test. I was hopeful of getting the blood test done before the appointments, so I left extra time for parking, waiting at SA Path and getting Alex’s blood test done, since that can sometimes be a bit tricky.

At 1.15pm I pulled straight into the last park on Brougham place, there was no queue at SA Path and Alex’s blood test was the calmest and quickest I have EVER seen. Shout out to phlebotomist Rose! We ended up with half an hour to kill before our first appointment so we went for treats at the hospital cafe.
Oncology were running on time, Gen Med were running on time and we got back to the car in time to hit the road just before rush hour started.  :O

Alex’s school had reported that he’d had a few seizure like episodes – we hadn’t seen any at home, but when we checked Alex’s height and weight at the Gen Med appointment we discovered he’d put on a bit of weight. Since dosage is weight dependent we are increasing the dose slightly and hopefully that will be that.

We are trying, in all of this, to make sure Jenny isn’t overlooked. She is being an amazing sister to Alex and is understanding of all the time we have to spend at the hospital. Last week I was sent an email from her dance school telling me that because of her exceptional behaviour in her ballet class she was being given 2 complimentary jazz lessons. They also recently announced they are putting on a musical theatre performance of the little mermaid, I’m sure you can imagine the look of joy on her face when we asked if she would like to participate.

So at this point, the treatment appears to be going well, we will have an MRI soon to hopefully confirm that, we’ve all settled down into our new routine and life is good.  😀

 

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