A Big Update and a Unicorn day

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.  😀