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My Rides

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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Twas the Friday before Christmas……

Jan26
by Jo Tann on January 26, 2021 at 9:09 pm
Posted In: Personal

The Friday before Christmas I was up at our local shops doing our grocery shopping when I got a phone call.
Dr Beck, Alex’s oncologist, was calling to ask if Alex was able to take tablets or if he needed them crushed and put into a suspension.
Why did she need to know this?
The internal pathology results had come back, and Alex’s tumour was positive for the BRAF mutation.

She was in a little bit of a rush as the paperwork had to go in that day – you have to apply to the drug companies to be allowed to prescribe these particular drugs (either Vemurafenib, Dabrafenib or Trametinib or some combination thereof) and that Friday was their last day before closing for the Christmas break. Since the process takes about a month Dr Beck wanted to get the ball rolling.

We had resigned ourselves to not having the results before Christmas so this phone call was a bit of a surprise to say the least. Fortunately I had ducked into a side corridor at the shops to take the call and the lovely Carly from Bruce’s meats was passing by and stopped to check I was OK, so I had someone to hug and share the good news with (and cry on – sorry about the apron Carly!).

We had a wonderful Christmas and new year, enjoying the time at home together. Alex has done a LOT of lego and both he and Jenny have learned to tie their shoelaces!

 

Alex with his lego car, and two tied shoes

Then on Thursday the 21st of January, less than a week before school goes back, I get a phone call. Alex’s Oncologist wanted an MRI to be done in January, there had been a bit of a mix up with paperwork and now the only slot left in the month was an 11am presentation to DOSA…. on the 27th of January.
The first day of school.
Alex has a habit of having medical crises on significant dates. It appears now that he’s syncing up his MRI’s with significant school dates. Sigh.

So it’s not off to school we go on Wednesday, it’s off to DOSA instead. The following day is also not off to school, at least not straight away, as we have a scheduled appointment with the Neurology department at 9am. We are also off to Cardiology at 10am as we were informed on the 25th that Oncology wanted Alex to have an ECG.

Why? No idea.

Hopefully we will find out on the 1st when we have another appointment, this time with Oncology. Do we know how to start a school year off or what!

With a bit of luck the MRI results will be available on the 1st for our Oncology appointment and we will find out what our next steps are.

Oh and Mum reminded me we know the word red in Welsh – coch – lets see if Dr Nick can beat that one!

 

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A quick update

Nov05
by Jo Tann on November 5, 2020 at 3:28 pm
Posted In: Personal

Thursday the 29th of October was MRI day. Thursday the 29th of October was also SASVI school photo day. We weren’t due in DOSA (Day Of Surgery Admission) until 11am so Alex went to school as usual, and once I had dropped Jenny to school, I followed him. SASVI were amazing and had reorganised the photo schedule so that Alex’s class went first.

After an hour of school we were off to WCH. Alex was first on the afternoon list and went in at 1pm. 90 minutes later I witnessed Alex’s most chilled out wake up EVER! Also, courtesy of the Dexamethasone, I had zero trouble getting him to eat and drink so that we could leave after the requisite 1 hour wait post anaesthesia.
The Dexamethasone has Alex eating like it is going out of fashion, it’s not all bad – we’ve been able to get him to eat things like broccoli – but he’s starting to get little chubby cheeks and a little pot belly! Having a little padding is a good thing, we don’t know what treatment is in his future or the effect it will have on him, but loss of appetite is a common side effect.
We are slowly decreasing the dosage of Dex, so hopefully his appetite should slowly come back under control, and he should transition back to cortisol at the start of December. We have also had to pause Alex’s growth hormone treatments, though hopefully only until we have a treatment plan in place.

Dr Beck called on Tuesday to give us the MRI results, after a 6 week interval there was no significant change to the lesions. This is tentatively good news – the tumors aren’t growing super fast – but 6 weeks isn’t a huge gap between scans so it’s not a complete indicator of their growth speed. Also the MRI wasn’t as clear as the one from September, the right hand side lesion wasn’t as visible – the shadow from the cochlear magnet blots out part of the image. So Dr Beck is going to have a chat with the MRI technicians to see if there’s any settings they can tweak, and to see if positioning Alex differently on the scanning bed will make a difference, and we will go for another scan in January.

While Alex was under anaesthesia he had a blood sample taken for a study being run out of Monash University in Melbourne:

The AIM BRAIN Project

The blood sample, along with the original tumor samples have been sent to Monash in the hopes they can identify the specific tumor type, with results expected in 6 – 8 weeks. 8 weeks is the 24th of December, so we are working on the assumption that we will hear from them in the new year.

Until these results come back there’s really not much anyone can do, so we are going to go on as normal and enjoy life while trying to keep up with Alex’s appetite!

 

 

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