Treatment 21– January 2024
Firstly a happy new to all and welcome to the blog for 2024 and hello to any new followers we may have.
Through general support on the facebook groups I have pointed the blog out as there have been people asking about how Avastin affects everyone.
This is Oscar’s journey but somethings do relate to others on Avastin.
So treatment began on 4th January for us and our old friend high potassium visited us again! So naturally bloods had to be redone on treatment day again which meant another extended stay!
Before we left home I put Oscar’s numbing cream on (elbows and hands today!!!). I took a picnic lunch as we were scheduled a bit earlier than usual. On arrival we visited Physio first to change an upcoming appointment. We didn’t wait long on arrival at daycare and nurse Sandra was on and did the usual stats (Bp, pulse, temperature, urine sample & weight). Dr A then asked to do Oscars cannula – then another miracle happened!!!
Reminding Oscar to remain calm – he almost zoned himself out – and with the help of the infra red machine and darkness again we got the cannula in 1st time!!!!! I was chuffed and proud of Oscar. We talked about bloods again but Dr A was more than happy we continue without the need for the 3 hour wait to analyse bloods. So we got set up with infusions quite quickly – that was a good thing because the department suddenly got very busy.
We breezed through infusion. Oscar kept his cannula in this time because as soon as we were home Dad would be taking him to Addenbrookes for the all important next scan the following morning. This all meant that for the first time in ages we managed to get home in the light!
On scan day Oscar saw his play therapist, Rosemary at Addenbrookes and they had a long chat about cannulation in the hope we can improve things over the next few months.
[IMAGE DESCRIPTION] “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain. – Vivian Greene”
Results day!
We had good news and Avastin seems to be doing its job. All his tumours are now stable.
Oscar can now move to a maintenance dose of Avastin given every 4 weeks from now (instead of every 2 weeks!) Which is fantastic news and we will Rescan & clinic in 6m. We do continue on Avastin now until something better comes along.
I informed everyone who needed to know, school, community nurse, our outreach nurse and liaised with Sam in oncology to sort dates for the following treatments.
More good news!
Oscar has been accepted for a sailing trip with the Ellen Macarthur Cancer Trust on 5th August 2024 and he is a little excited!
So from here …. Onwards! hopefully less anxiety with the cannula, in school more & doing very well, he has also started back playing competitive football for his team and we continue at youth club. I will update again soon!
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
— Joanne Ward
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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 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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