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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So you know how we had a plan…

Oct26
by Jo Tann on October 26, 2020 at 7:00 am
Posted In: Personal

In the past when Alex had a medical emergency he had a habit of having them on major holidays or days of significance to us. Apparently he is yet to break this habit, though his aim was a bit off this time. (Phil’s birthday isn’t until Tuesday the 27th)

Wednesday (21st) we had 2 hospital appointments, endocrine and general medicine. They both went well and we got home around 4pm. At 6pm Alex started shouting from the living room saying he hurt and he couldn’t talk. He speech was very slurry and he told us his hands were on the wrong way, that they were tangled. Phil called an ambulance and right before they arrived he started improving. He was still a little off sounding, but before we left he was showing Daniel and Celeste all his toys and his room. they decided he needed to go to WCH anyway so off we went. Alex’s speech started deteriorating again part way there and we finished the journey under lights and sirens.

We went straight into ED for assessment, Alex seemed to have waves of slurred speech and not being able to form sentences, then improve not quite to normal, then start to slur again. The wonderful Dr Elie was there and said  in his opinion Alex looked like he was having seizures so he wanted to do a contrast CT scan. The contrast was to give Dr Elie a clearer picture of the tumours, since the CT isn’t as affected as the MRI by Alex’s cochlear magnet.

This meant a cannula had to be inserted, he was very good but he got quite upset by the process and so when it came time for the scan he had a bit of a melt down. It was around 10.30 at night by this point so he was tired on top of upset on top of scared and he did not like the head cradle for the CT.

After 10 minutes of tears I decided to take him to the toilet and give him a few minutes out of the situation. He calmed a little and when we got him to lie down again he fell asleep. Radiology got some nice clear pictures.

The scans confirmed the seizures and they started an anticonvulsant drug called keppra.

Scan done we headed back to ED. Alex went to sleep, and I would have liked to but there are no parent beds down there. It was decided that they wanted Alex on a 2 to 1 (patient to nurse) ratio and that we would be moved to Cassia ward. The nurse looking after us in ED would be coming with us to Cassia to look after Alex for the rest of her shift.

 Unfortunately ED was busy, they couldn’t let her go until they had sorted out other patients, so by the time it quieted down enough for her to leave it was a quarter past two. AM. 

We finally got settled in Cassia and into pyjamas ready for much needed sleep when Alex managed to disconnect his cannula line from his saline drip. It was a literal bloodbath. He looked like an extra from a B grade horror movie. 

If you’d asked me that morning what I thought I’d be doing at nearly 3am, washing a metric half cup of blood out of Alex’s pyjamas wouldn’t have been high on the list…

I finally did get some sleep, but Alex kicked the O2 sats meter off his toe a few times over night which sounds an alarm until it’s reconnected, fortunately it’s not heavy machinery and I was able to operate it whilst drowsy.

On Thursday morning his speech was much improved, we had a visit from Danusha from neurology, then Dr Mike and Dr Beck from oncology, then Dr Elie from neurosurgery. Their combined considered wisdom at this point is to try and get some samples of original tumour tested at WCH, as it’s a quicker turnaround time, and see what the results are. There’s also apparently more than one gene mutation they can look for, so even if the BRAF mutation isn’t present there are others which might be targetable. They wanted Alex to stay another night to make sure the seizures don’t recur and have scheduled an MRI for next week.

I was starting to think that we needed to install a revolving door on Alex’s room that day as we had visits from neurology,  neurosurgery, oncology, pharmacy and then neurology again. Our second visit from neurology included the head of department – Dr Nick.

Alex started a competition between Dr Mike from oncology and Dr Nick about who knew the most number of languages to say ‘red’ in. Alex knew Japanese and Italian, Dr Mike knew French and German but Dr Nick lost since all he knew was French. He wasn’t impressed and since he lives around the corner from Dr Mike I believe some sort of retribution may be on the cards – if your fence ends up painted red Dr Mike, you know who to talk to 😊

Dr Nick explained that the seizures were presumably being caused by the RHS legion which is in an area which controls speech. There’s no one reason this happened today, as opposed to 3 weeks ago, but the fact that it has happened isn’t surprising. The lesion is having an effect on the surrounding brain tissue making it more likely to trigger a seizure.

He’s likely to be under neurology’s eye for a while though, even if everything goes our way oncologically speaking. There will still be scar tissue left behind, which in and of itself might be enough of an irritant to trigger seizures.

To add insult to injury, nurse Kate, an oncology nurse, told Dr Nick as he was leaving she knew the word red in Danish.

Friday morning oncology gave us the ok to go, neurology did too, but only after we had done seizure training. Alex was diagnosed as having had focal seizures which are not life threatening, however, since he’s now had a seizure his risk of having a convulsant seizure is slightly increased, so as a just in case we have had some training and have a sedative in the fridge. Let’s hope we never need it.

Once that was done, we signed all the forms and we were on our way home, just in time to get Jenny from school.

Alex is now on a few new drugs. Keppra is the anticonvulsant of choice, though there are several others, the good thing about keppra is that it won’t interact with any of the drugs oncology are looking at using. He’s also now on dexamethasone temporarily to reduce inflammation in the tumours. We have had dex in our medicine cabinet before – Alex was on it for several months whilst he was having radiation treatment – and we are already seeing the twin side effects of appetite increase and ‘roid rage’.

TLDR? despite the scare he gave us, we are pretty much in the same place as before, waiting for test results and having another MRI. He’s just on an anticonvulsant medication and a steroid now too.

 

The reception desk in the imaging suite at the WCH has this sign taped to the patient side of the monitor, and it struck a chord with me given the events of the last few days.

no amount of regret changes the past
no amount of anxiety changes the future
any amount of gratitude changes the present

I can’t go back and notice Alex’s symptoms earlier
I can’t do anything about test results or treatment to come
But I can be grateful that there is medicine, and medical staff who know how to apply it.
And I can be grateful that Alex is still here, and still fighting.

 

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2020, just when you think it can’t get worse…

Oct20
by Jo Tann on October 20, 2020 at 5:27 am
Posted In: Personal

This is a post I always hoped I’d never have to write, but you don’t always get what you want out of life.
Two of the tumour sites in Alex’s brain have grown.
I’ll pause for a second so you can process that.
…

On the 4th of September Alex had his first MRI in 2 years. There had been a breakdown in communications between departments at the Womens and children’s hospital – Oncology had discharged us, but no one had let the neurosurgery department know that our discharge meant that they were now in charge of booking in Alex for his MRI scans – consequently no one had scheduled the 2019 MRI. We chased it up in October and it was booked in for April of 2020. Of course you all know what happened in March 2020 and all ‘non essential procedures’ were postponed. It was rebooked for May, then cancelled again and finally rebooked for September – almost exactly 2 years on from his last scan.

We were used to having the scan, waiting 4 business days and then getting a phone call with the results. When a week had passed post scan we started to get a little edgy and began calling the hospital trying to get the results. I’m sure we annoyed quite a few people in the neuro department with our repeated calls and one in person visit over the next week or two, but in the end we were given an appointment for the 30th of September.

That was when we were told that one of the lesions they were monitoring had shown growth. 2 years ago it was a blob around 6mm in length situated close to his brain stem. This scan showed it had grown to 16mm.
To say this was a shock would be an understatement. We went through the scans with Dr Elly, there wasn’t much that he could tell us other than it had grown, this wasn’t a good thing etc. He told us that the neurosurgery department would discuss it at their weekly meeting the following Tuesday and he would keep us updated.

Knowing something is wrong and having a pathway forward is horrible but do-able for me. Knowing something is wrong but having nothing but that knowledge is indescribably hard. Phil and I both struggled with this news, I processed by keeping busy – we had to let family know, and I have several projects currently in hand – shed therapy did help a little.

On the 8th of October Dr Elly called and told us they had deemed the tumour inoperable and the neurosurgery team were meeting with oncology on the 14th, then we had an appointment made to meet with our new oncologist Dr Beck on the 19th.

Amid all of this we had one wonderful thing to hold to. Alex turned 11. He had his birthday party on the 18th, a day supposed to be overcast and cloudy, but when 2pm rolled around there was nothing but blue skies and sunshine and so much joy. Watching him play with his friends on the playground and bury his face into his slice of birthday cake was priceless.

Alex eating his birthday cake

That brings us to today – the 19th. We went back to level 5, we even saw a few familiar faces, which fell as soon as we told them we weren’t back for just a checkup.

Dr Elly went first, when going over the scans again they had seen a second lesion which had changed size, this one on the right side of the brain. Both sites are considered to be inoperable – even to biopsy – the brain stem lesion is hard to get to and is situated near a nexus of nerves – even trying to get near it would carry an enormous risk of paralysing the entire left side of Alex’s body. The lesion on the right side has cuddled up to a spot where the main artery entering the brain branches out – going after that one risks a massive stroke.
This makes things more difficult for Dr Beck – with fresh tissue samples you are able to be more certain of your treatment – however there are still some samples available from the original tumour which will help somewhat.

Back in 2013 the tumour was tested and found to be a mixture of tumour types, which was what made it difficult to treat. It started as a grade I tumour – a ganglioglioma, but had changed as it grew, morphing into a grade III tumour – a PNET.
PNET tumors are aggressive and fast growing which was why Alex was given such a high dose chemo protocol. We hope what has started growing again this time is the glioma, since in the last 5 years a new gene therapy treatment has become available for this kind of tumour.
Glioma tumors have a high rate of a specific mutation (BRAFV600E if you want to google scholar it) – around 50%. If the mutation is present there are now a few drugs which can target that mutation.
They aren’t perfect, the most common side effect seems to be a several different types of skin irritation, but they are vastly better than conventional chemotherapy when it comes to the collateral damage these drugs have on the rest of the body. They are also oral medications which can be taken at home, so an infuser port and weeks in hospital having chemo are not required.

The pathway forward right now is to get Alex’s original samples tested for this mutation, this will take 6 – 8 weeks, and to schedule another MRI to give us an indication of how fast the tumors are growing.

So it’s a 50/50 chance. Toss a coin. Cross your fingers.

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