This is the third instalment of the Avastin Diaries Blog series, to read the previous articles click the links below:
Avastin Diary 2 – First Treatment
Avastin Diary – Second treatment
6th April 2023 – Wow the days are just flying by and just like that we got to week 2
It was a busy few days prior to that. I had a meeting at school with our SENCo and outreach nurse Carly and our NF2 Nurse attended virtually, this was basically to give the school information about Avastin, side effects and how Oscar may be affected and why he needs it. It was a really good meeting, and I would suggest if your child is starting Avasin or taking it then a discussion of this type with school about it goes a long way to understanding. It allows him to have a toilet pass and a time out pass plus more freedom with what he is able to drink in the day.
Our community nurse, Sam, came the day before infusion to take Oscar’s blood test. For children they use the fingerprick technique. Oscar was quite uncomfortable with it at first (as it was all new), but we soon got a couple of good small tubes from him for blood tests. Sam also gave me a good supply of numbing cream and dressings so that we can put the cream on before going to Oncology to save time. And she also called them to check what time we were due in the following day.
Sam takes those to the hospital so they can be tested prior to infusion.
Later that evening I got a text from Oncology saying Oscar’s blood test has been spoilt in transit and he needed to be taken that evening to get another test done. So, a 9pm trip to oncology ensued and another test was done!
Infusion day was an early start, 8am to put the numbing cream and dressings on at home then 8.30 we arrived in clinic, so we took some lovely breakfast croissants and coffee with us this week.
After checking in Oscar asked one of the ward staff to set up the PlayStation for him, while we got comfy waiting.
Anna, the oncology nurse came to see us about Oscar’s blood test saying that sometimes it congeals, and they cannot use it to test which is why we had to repeat the test. After that she did BP, height and weight followed by urine check.
We saw Dr Emmanuel again and had a quick chat about today’s infusion before putting Oscar’s cannula in.
Well that turned into a disaster! Along with the congealed blood, they couldn’t get the cannula in where we had put the numbing cream (mainly due to the retest, the area had become inflamed) and several tries followed in the same hand, different veins, then tried his elbow area (& back of elbow – a new one on me!) and literally nothing worked, so we resorted to the other hand which had no numbing cream on. Oscar was very brave (& squeezing my had with some numbing spray) and eventually we got it in – phew!
Another massive learning curve and great advice from the NF2 community
- Ensure hands are warm (they can supply gloves, warm bowls of water etc)
- Ensure plenty of fluids for blood test AND cannula.
So now we’re on the case for the future!!!
We were then ready to start, as Oscar tolerated it well last time the infusion time was bought down to 1 hour this week and Oscar happily played the PlayStation and we ate breakfast in relative peace!
And for a Brucey bonus Oscar got given a packed lunch and Easter egg from oncology!
NB – Instead of having a cannula at every visit you can ask about having a port line – I explained this on the 1st blog
NB – If your little person does not like needles etc you can have numbing cream (EMLA) or spray which numbs the area before they insert the cannula
One of the side effects that many told us about is tiredness and fatigue after treatment. Oscar wasn’t particularly affected by this, but its something we will look out for in future. We definitely need to up the drinking game for bloods and cannula and make sure hands are warm for needles.
Next time –Avastin no. 3
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