This is the latest instalment of the Avastin Diaries Blog series, to read the previous articles click the links below:
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
[Figure Description] Oscar and Jo waiting for the 6th Avastin treatment
1st June 2023. Three months in!
It’s half term this week and we managed a few days away at the coast while Oscar did his 5K challenge fundraiser. (Click here to find out more about Oscar’s 5K Challenge!)
Sam emailed to say Natalie was coming to take bloods at home because it was half term. That all went smoothly.
I then got a text again from oncology at 9pm that night to say Oscar’s potassium levels were high and was he drinking enough and weeing ok. We didn’t get called in for repeat bloods though, but I made sure Oscar promptly drank another litre & a half on top of the 2.5L he had already had. It could mean that we would need to repeat bloods when we get to oncology, so I guess we’ll find out on Thursday.
I had done some research this past week about the cannula problems we have been having. Our MRI cannulation seems to go right every time, so I was looking to see what the differences were. Juliette (Addenbrookes) suggested I email our oncology team and ask them to check they’re using the smallest cannula & a trained cannulation nurse. We felt that because the daycare doctors were swapping there was no consistency for “getting to know” Oscar and his veins. We also have a play therapist at MRI cannulation, and she takes away any anxiety so that Oscar feels more in control.
So I emailed Carly and we managed to get a plan in place with play therapist Shaz – she is going to look after Oscar and try and help his anxiety. And we also had on duty, daycare doctor Omiama who had successfully cannulated Oscar previously.
We had a list of appointments Thursday starting with physiotherapy. That finished with another list of exercises and a bit earlier than we thought, so we made our way to the next floor to oncology day care reception where I was able to put on Oscar’s numbing cream – We were advised last time to put it on hands and inner arms – so all areas covered and keeping warm we than saw Professor Grundy who wanted to check how things were going.
Professor Grundy talked about Avastin and that all was going as planned and is keen to know when our scans were at Addenbrookes for the 6 month mark. He’s going to speak to the team there. We also mentioned the cannulation problems and a Hickman line was suggested as an alternative to a portcath (more on this later) – the Professor would then allow Oscar to play football with that in as long as he wore protective clothing. So, I left it that I would research that as an option. I mentioned then about our cannulation problems and Professor Grundy thinks the numbing cream is on for a bit too long and suggested a half hour slot before treatment as opposed to 1 hour (but I know there are different time scales for different creams – so I need to check what cream I am given from the community nurse).
I then mentioned about the bloods showing high potassium levels in blood tests, Mr Grundy was very sure that it would be highly unlikely that Oscar would have high potassium levels and said when bloods are taken the way they do for children (fingerpricks), they can very often get spoilt in transit – this was highly likely for showing high potassium levels – there is no reason to think they are high. That puts my mind at rest for the future texts that might occur. So, Oscar had height and weight checked then we went to reception as Shaz was waiting for us for treatment.
We will see Professor Grundy again in 6 months (after 6m scan and results at Addenbrookes)
Oncology wasn’t very busy by the time we got there (3.30pm), we sat down and one of the nurses came and did a urine check,
Shaz, play therapist, then took us for cannulation with Dr Omiama, Oscar is going to read a book during the cannulation and they are no longer going to “tell” him what they are doing – but just do it (telling him adds to the anxiety) – So first vein we found was the inner arm and we decided to go for that – and in it went first time! Perfectly, Oscar didn’t feel a thing, wasn’t anxious or anything.
This proves the play therapist idea, numbing the arms and not telling him, is the plan to go forward.
We went to sit back down, and nurse Sandra came to do BP, Pulse and temperature checks. Nurse Izzy came to sort Oscar’s treatment which started at 4.15. I mentioned to her that I wrote about her in my previous blog. She then said that by next week she thinks that communication might be easier because they were being allowed to work without masks. We had something to eat and drink while there and it all went smoothly after that.
We didn’t have to repeat bloods as I thought either, so we were in fact much quicker than I had anticipated being for the afternoon.
On the way home, Oscar talked about whether he would like to become a physiotherapist in the world of work!
[Image Description] A colourful peacock painting in the Children’s Oncology with the words “Calm, Happy, Faith and Care”.
Hickman Line
For more information on this please see :
I did bit of research on this when I got home as I didn’t really know what one was. I am concerned that they are not suitable for getting wet generally. Oscar is a swimmer (when he’s not playing football) – so this would lead me to believe its not a suitable alternative to us. Also, research showed that infection levels were 5 times as much as a portcath – again something that we would not wish for. Great advice again from the NF2 community on this, but I think we will decline the offer in favour if the hope cannulation is now improving.
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.
Next time –Avastin no. 7 – Lets see if we have sorted all the problems!
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