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:
Avastin Diary – Children’s Services Special
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[IMAGE DESCRIPTION] A large water bottle with reminders to stay hydrated throughout the day!
Treatment 15 – 5th October
Oscar has been enjoying more visits to the hospital youth club, making friends and is enjoying being back at Football training and PE.
He also has been getting access to Forest school at school. Research in the UK into forest school and its impact on young lives found positive impacts in connection with communication, social skills, physical skills as well as understanding and building concentration. Being out in nature and in the fresh air does wonders for mental health.
All of these things are doing wonders for his wellbeing.
27th sept Oscar had 6 month scans at Addenbrookes and also had a quick chat to the child psychologist about how he has been feeling. The scans went well, and we are awaiting results.
I got Oscar a new drink bottle this week, I can’t take credit for this as it was shown to me by a fellow NF2er who follows our TikTok social channel – give her a follow at “Council with Cam”. She has lots of useful tips for making life easier with NF2. Anyway, Oscar loved the motivation marking on the bottle and it’s encouraging him to drink a little more. (We don’t endorse any specific products btw)
Bloods this week went very smoothly.
Dr Abba and Izzy were around in a busy oncology this week and one of Oscar’s friends from youth club was there. The cannula went in first time – we had more to drink this week right before cannulation so wondering if this makes a difference – we will test the theory!
Infusions went well and there were no clotting issues when the cannula was taken out.
Next up – treatment 16 – Scan results!
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
Thankyou to everyone who sent me information about side effects – this is the final call. We are collaborating with Nerve Tumours UK on this issue
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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 grace@nf2biosolutions.org or Joanne Ward (NF2 BioSolutions UK and Europe’s COO) at joanne@nf2bisolutions.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!
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THE COMPLETE AVASTIN DIARIES BLOG SERIES LINKS
Avastin Diary 2 – First Treatment
Avastin Diary 3 – Second Treatment
Avastin Diary 4 – Teamwork and Third Treatment
Avastin Diary 5 – Waiting, Trainees and 4th Treatment
Avastin Diary 6 – BSL Nurse and 5th Treatment
Avastin Diary 7 – Another Learning Curve 6th Treatment
Avastin Diary 8 – Vimto, Ice Cream and 7th Treatment
Avastin Diary 9 – Tough Week and 8th Treatment
Avastin Diary 10 – 9th Treatment and Mental Wellbeing Importance
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