This is the latest instalment of the Avastin Diaries Blog series. To read the previous article click the link below, or for the complete series head down to the bottom of this page for the full set of Avastin Diaries Blog links:
Treatment 10 – 27th July 2023
Treatment 11 – 10th Aug 2023
Treatment 12 – 24th August 2023
Treatment 13 – 7th September 2023
We hope all our readers have had a lovely summer and have managed to make lots of new memories. I am not too sure where the sun went to for much of it and we seem to be drifting closer to Autumn. School and college started for us!
Firstly, some good news. I mentioned Carly had been looking into the Ellen McArthur Trust sailing trips and she confirmed that Oscar is eligible to attend these so we will be looking into them more and working out what dates we are able to attend and if it corresponds to availability I think it’s a great morale booster for our kids to be able to attend something like this and help them deal emotionally and physically with things they are going through.
Over the last 4 treatments we have experienced differing problems again – so it’s not always been as smooth running as we had hoped.
We have had to deal with staff shortages in the oncology department – which meant our first treatment in the holidays took far longer than normal, despite an early appointment (& we wanted an early getaway – it wasn’t mean to be!). Hoping that this situation does not reoccur.
[IMAGE DESCRIPTION] Three smiley faces in artwork at the Oncology Department
This treatment also saw a trained nurse doing the cannula (instead of the oncology doctor). She used a nifty little Infrared machine today to locate Oscars veins, you need a well-practised nurse or doctor though because it has to be done in the dark! (but it was fascinating to watch and see his veins and how she guided the cannula to the right place!)
We had a physio appointment that day also but because oncology wasn’t running to time, we never made it but she came to see us instead. We chatted about how Oscar had been and how the lack of physical stuff is taking a toll on his well-being and the hope that by September Oscar will largely be back doing all his physical activities.
The next treatment 10th Oncology was quiet. Shaz play therapist was on duty and Dr Emmanuel was also on duty – we think these are the dream team to rid Oscar of any anxieties! We had a great chat to both about our recent trip, Shaz had a new book for distraction and Dr Emmanuel manged to get the cannula in first time! Oh, happy days!!!
The 24th of August treatment saw raised potassium levels AGAIN in Oscars blood – but I have done further research* on this and can ultimately say it’s how they are taking the bloods using finger pricks. Other than that, we had no problems, Shaz was around to aid anxiety again. Our names nurse came for a chat and mentioned larger needles for fingerpricks might do the trick.
* “What can cause a false high potassium reading? Potassium can move into and out of blood cells during storage: in cooler temperatures, potassium diffuses out of cells into plasma, leading to the reading being artifactually higher, while in higher temperatures an enzyme works to pump potassium into cells.”
More good news as we saw Oscar’s orthopaedic consultant with a follow-up about his foot operation and he has been given the go-ahead to restart PE at school, football training and football mentoring (at school), BUT he is strictly not to overdo things and no competitive play just yet, but this should have a massive improvement on Oscar’s mental wellbeing.
I emailed school before Oscar started back to:
- Advise of the PE situation
- Advise of our expectations for him being given work on Avastin Days (Because he was never given any catch up work in y7) – We start as we mean to go on!
- Make ourselves known to his new Y8 Head of Year
- Arrange a meeting late September to ensure everything is being dealt with satisfactorily.
Then just like that the school holidays are over!
Bloods were done at school as soon as Oscar returned and the first treatment for Sept was around the corner!
We had cannula problems again this week – possibly due to a different doctor that we have not met before.
Sian from the Hospital Youth Services came to see us after Carly’s concerns about Oscars wellbeing – the Youth service run a youth club for children going through treatment or chronic illness and she invited Oscar along. They do games, sports, camps, treats, day trips etc etc and Oscar is keen to explore this – something else to add to the list for us to explore.
We are also experiencing a lack of blood clotting when the cannula is taken out of Oscars hand – I need to investigate further as it had happened twice in a row, we make an exit to the door and blood pours from his hand all over the floor – not particularly good!
So as you see it’s been a bit of a mixed bag over the course of the last few treatments, still no continuity to the problems.
Next up – treatment 14 – Scans are due !
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.
We would like to do an issue about Avastin Side effects, please share your side effects stories so that we can cover as many as possible. This is closing very soon as I want to get the issue written!
We would love to know if you have strange or less well known side effects to as well as the common ones.
Feel free to reply on our posts or email me at firstname.lastname@example.org
This blog has been created as a way to share real stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at email@example.com or Joanne Ward (NF2 BioSolutions UK and Europe’s COO) at firstname.lastname@example.org and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!
THE COMPLETE AVASTIN DIARIES BLOG SERIES LINKS