This is the latest instalment of the Avastin Diaries Blog series, to read the previous articles click the links below:
15th July 2023
Following our tough couple of weeks, it’s been a time of meetings and trying to help Oscar navigate his feelings and emotions.
I had a meeting at school with the SENCo, Support assistant and Oscar so that we could try and help improve Oscar’s wellbeing and to let him know that he is being listened to.
We discussed how Oscar feels in lessons and how he is supported & his feelings of not being understood. We have given permission for any medical information to be disseminated to any of his teachers (this should get around some problems of them not understanding what he is going through, and GDPR rules don’t allow that without permission (!) – GDPR at times (many times) actually goes on to make life much harder than it needs to be and can cause more problems than it is actually meant to solve! I also gave them our community book “Living with NF2” which goes some way to explaining about life with NF2.
School are going to talk again to his teachers about his medical pass & toilet pass that will allow him to use the sensory room when he feels the need. There was also suggestion of a class discussion around Oscar’s condition to allow his peers to be more understanding.
Many people find that physical activity helps them maintain positive mental health, and I think Oscar has struggled in coping with this, along with everything else, due to him not being able to access PE since December due to his foot operation. The splint is gradually being worn less and I hope that we can get back to PE and football come September. School have put him forward for extracurricular football mentoring to help with wellbeing going forward.
I met with Carly the week after the school meeting, and she was very concerned about how Oscar had been feeling.
She is getting in touch with the Youth Service at our hospital so that Oscar is going to be able to meet with other children his age who are going through similar things, they also meet once a week and get children involved in many activities to help with their feelings and emotions and general well being.
Carly also mentioned about the charity “Over the Wall” to me who organise activity camps for children aged 10+ going through the exact situation like Oscar. The camps are fully supported by medics and counsellors and they are designed to help well being and getting kids “to be kids” – and they run camps for siblings & families also. I spoke to Oscar about this and he is very keen, so we need to explore if we would be able to attend a camp.
She also mentioned about the Ellen MacArthur Foundation sailing trips – again like camps but taking children on sailing trips to help with their mental health.
All these things we are going to investigate more, it’s about meeting others who are going through similar things as we are and dealing with chronic illnesses like we are. And incredibly all these things are free. Oscar is eligible for the camps and we are waiting to hear about the sailing. I hope to do a write up about these separately when I have looked into them more.
She reminded me also that I need to speak with the DLA to update them about Oscar being on Avastin now.
I also got in touch with another NF2 family and we are trying to arrange to virtually meet so that the boys can chat and I need to speak to the child psychologist at Addenbrookes that we see so she is aware of how Oscar is.
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.
The school meeting also gave me a chance to talk about transition to y8 for Oscar, the Thursday absence and lack of work he has been given in y7 and my expectations for that going in to y8 so that Oscar is receiving the same work as his peers and is not missing out or being left behind.
[IMAGE DESCRIPTION] Oscar outside the hospital wearing an awesome Nottingham Forest footy top!
Sam emailed me late Tuesday to say she will see Oscar in school to take bloods this week. The bloods all went fine.
I collected Oscar from school and put the numbing cream on.
We arrived at oncology daycare which was unusually busy so had some waiting time. Nurse Jodie today did BP, pulse and temperature checks before Dr Omiama had a quick chat and weighed Oscar. Unfortunately, we had cannula problems again and Oscar got very anxious when she tried to put the cannula in a different place to where we had put the EMLA cream. So, after 3 failed attempts, we put on fresh cream and waited 30mins before trying again, this time with reinforcements!
Cue Shaz play therapist and Dr Emmanual !! …. Dr Emmanual noticed Oscar wasn’t wearing his splint and asked him how things were going, so lovely he had remembered – and he was equally impressed knowing that Oscar rarely needed the splint now. The chat did the trick and was just enough to distract from the cannula that then went straight in, and infusion started shortly afterwards.
Despite a 1.30 appointment we didn’t get out quickly with all the waiting and delays, so made it home just after 5pm
It is nearing the school holidays and so Friday I sent details to all our Avastin contacts about plans and timings for the next 3 sessions. We have Avastin a total of 3 times in the holidays which has meant we have had to alter what we do as a family during this time and change things a bit.
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.
As it is the summer holidays, I am taking a break from writing the blog to make some memories. We will be back in September to update you how things have been going.
Next time –Avastin no. 11 – Starting y8 & awaiting Scans!
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