Avastin Diary 9 - Tough Week and 8th Treatment

This is the latest instalment of the Avastin Diaries Blog series, to read the previous articles click the links below:

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29^th June 2023

Oscar has had an incredibly tough week this week with lots and lots of tears & upset at school. Following a very minor telling off for being forgetful by his art teacher the flood gates just opened. He has forgotten a couple of things recently which is genuinely not like him at all.

It really took us all by surprise because not only does Oscar love art lessons, but he also gets lots of positive behaviour points and he has shown great resilience since starting Avastin and having his major foot operation, both of which have caused huge upheaval and adaptions to the way things have been able to work at school.

So, it was a bit out of the blue for Oscar to say that he has been finding everything medically very overwhelming and the forgetfulness was really the trigger point, and he says that none of his teachers understand about Avastin and what effect this is having on his life both at home and at school. And saying that me (mum) is the only person to understand how he feels.

His headteacher spoke to Oscar’s dad on the phone about everything and has offered counselling services if we think Oscar needs to talk to anyone about things.

When I got the text, I immediately emailed the SENCo and support assistant to see if one of them could find Oscar and let him have some time out in the sensory room and to check he was ok.

(Since we were registered with the SENco and school support, Oscar has a medical pass which allows him time out in the sensory room if he is feeling tired or overwhelmed with things, and its just a quiet and reflective space, which gives him time and space to feel calm – I am now very thankful for this space which he can go to)

I also mentioned that I would have a conversation after school about things with him.

One of the side effects of Avastin is that it can affect one’s emotions and feelings, so I think we need to explore this.

I talked at length to Oscar when he got home from school. He says the sensory room is a good place to go and be calm, so that seemed to work for him, and we got to the bottom of a few things about what had happened and why he feels so overwhelmed and not understood at school.

On from this I am arranging a meeting at school, with SENCo and school support, to talk about the fact Oscar feels his teachers should be more aware of things, feelings, and emotions … and in his words “should care more”.
Carly (Outreach nurse) is coming to see me next week to have a chat about how Oscar is feeling and hopefully give us some things we can do to help him feel calmer.
I asked Oscar if he would like to (virtually) meet with the child psychologist we usually see at Addenbrookes, she has been great at talking to him during our NF2 clinics.
Oscar says really, he doesn’t know anyone else with NF2 (besides me) so I think he is feeling a isolated, so I am getting in touch with another family and arranging a virtual meet to see if that helps with meeting someone nearer his age – not necessarily to talk NF2 – but more to talk with someone who understands more than just his mates at school.

I am trying to put all of this into place before we finish for the summer holidays.

A meeting at school also gives me the chance to discuss how Oscar will proceed into y8 when he returns in September to ensure that missed lessons for his new timetable do not become the bug-bear that they are at the moment – so I can set out my expectations to ensure Oscar is given missed work for the times he has Avastin (because to be honest I have previously spent so much time on this and not being heard that I have just given up for now)

The school meeting is arranged for 4^th July, Carly sees me on 11^th July and I am currently waiting for the family to get in touch now to arrange things, So I am hoping Oscar feels like he is in a bit more control and less isolated but able to talk about his feeling and emotions. I think I am quite lucky really in the fact that Oscar does talk about things as opposed to bottling up and that’s half the battle in my opinion. Its good to Talk – so they say!

Sam emailed me early Wednesday morning to say she will see Oscar in school to take bloods this week. The bloods all went fine.

Before I collected Oscar from school, I packed the bag to take with us, I thought I would give a list of what we take each time:

Drinks for Oscar (usually something nice he has chosen)
Drinks for me (usually a small flask of coffee or a cold drink)
Phone chargers
My notebook to make notes for the blog.
Some food for Oscar and me
My purse (just in case)

I collected Oscar from school, and we went to get some fresh pastries for this week’s munchies! And I then put the numbing cream on for Oscar (we are getting good at working out where the veins are!)

We arrived at oncology and nurse Anna and nurse Sandra were both on this week. The daycare looked chilled and was slow going this week!!

[IMAGE DESCRIPTION] The view from the Oncology unit on a lovely sunny day overlooking Nottingham Castle.

After an hour wait, Sandra did the usual stats BP, temperature, pulse, & weight plus urine and play therapist Shaz was not on duty today. Anna quickly ushered us into the cannulation room to see Dr Tim and as soon as the “Where’s Wally” book was out with us reading it the cannula was in – quicker than anything, just like that!! Absolutely genius no messing at all! – I kid you not.

Even Oscar was surprised at how quick he worked and said “I never felt a thing” …. “That Doctor was the best and we need him always!”

Infusion started at 3.40pm and went very smoothly and we were out waiting for the bus home at about 4.40pm

Friday morning Oscar seemed a little more tired than usual so after his first lesson (Maths), he decided to go for some chill out time in the sensory room (this lesson is usually PE which he is not yet doing fully)

NB – Instead of having a cannula at every visit you can ask about having a port line – I explained this on the 1^st 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.

Next time –Avastin no. 10 – Its nearing the end of the school term so we need to discuss plans for the long summer holiday

Help Needed

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.

We would love to know if you have strange or less well known side effects too, as well as the common ones.

Feel free to reply on our posts or email me at joanne@nf2bisolutions.org

Thankyou

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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 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!

Avastin Diary 9 – Tough Week and 8th Treatment

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