Treatments 26 April, 27 May and 28 June
[IMAGE DESCRIPTION] The peaks and troughs of Avastin
And here we are into year 2 of Avastin, I hoped it would become much better with our cannulation troubles, but again the start of the year is proving to be very much peaks and troughs.
Our oncology visits for the last year have been in the afternoons, I usually collect Oscar from school after his 2nd lesson. School have now altered his timetable and his beloved Forest School lesson is now the last lesson on Thursdays – not ideal!
So knowing how good this lesson is for Oscars mental wellbeing we have decided oncology visits should be Thursday mornings in the hope he is able to return to school for the last lesson – Forest School!
Our April treatment was the first time trialling this and Oncology was empty when we arrived – we have no EMLA cream at home now so the nurses put the cream on as soon as we arrive.
The usual stats were done before we even sat down so this bodes well for us finishing on time. Well we hoped so.
After 2 distressing & teary times trying to get the cannula in, we decided to put cream in a different place and to try again after a wait and the cannula went on on the third try. We were then kept waiting for an enormous amount of time and our best laid plans to return to school were scuppered as infusion didn’t get finished until 2.30 gone. Not being deterred we will trial the early slot again on the next Avastin round.
Again, early on 23 May we arrived at an empty Oncology unit but this time we had a new plan!!!! We are trailing no cream and just the numbing spray because we think if the cream is left on too long it makes the veins disappear and cannulation harder. Plus could be quicker to get Oscar back to school! So we had stats taken very early again then lots of holdups before cannulation then guess what! …. Cannula went in first time (to say we were ecstatic was an understatement), however due to all the holdups getting treatment we were very tight on time about whether we would make the First school lesson!
So, we finally got out at 1.30pm and made it to school for 2.15pm so that Oscar did in fact go to forest school – yay! And he was a happy chappy from there!
Besides timing everything went really well on this visit … so onwards and upwards with our numbing spray plan and early start! – what can go wrong?
Before June treatment we had our latest scan to contend with, which we had arranged to be done locally instead of travelling to Addenbrookes.
We were sent to a new dept (Childrens Day case Unit DCU) for cannulation and no word of a lie it was an amazing experience for Oscar. The staff in the department were so nice, kind and caring looking after us. Oscar had cream again and played on the Switch while it worked then after 40mins we tried the cannula and the doctor who did it was the most kindest, caring person ever. She was talking to Oscar the whole time to keep him calm and the cannula went in like clockwork – amazing. I mentioned our cannulation troubles on oncology and said how thankful to her we were for making it an easy and positive experience for Oscar.
We then went to Childrens MRI where this fantastic positive experience continued. The guy in MRI again was talkative and calming including Oscar in EVERYTHING. So much so that Oscar felt able to advocate for himself and complete the forms with staff. I was amazed at the resilience of my little NF2 warrior. He picked out a film to watch while in the scanner then Oscar felt so good he went in the scanner on his own! ALL ON HIS OWN!!!
Whatever happened to make this a tremendous and very positive experience I need to bottle for infusion days! (& I did write a letter of sincere gratitude to everyone involved)
Another early start in oncology on 20th June armed with our positive previous experiences and full of the joys we hoped for a good visit.
Stats were done and cannulation tried very early no waiting around today, only the plan fell by the wayside! 6 attempts at the cannula with the numbing spray and 3 different doctors trying – They were rescued by a lovely doctor from the daycase unit – where we had our MRI cannula – and she was terrifically calming, kind and talkative with Oscar. The relaxation helping the cannula to go in again with just the spray. Glad to say after this treatment came swiftly and we managed an early exit from Oncology.
Oscar made Forest school in good time and also keeping active at the gym afterwards.
I am probably going to make enquires to see if going forward we can do cannulation in the daycase unit prior to Avastin.
We also had a foot follow-up between all of this and I am really please to say our consultant is beyond happy with progress and we are discharged from physio and Oscar no longer need to wear nigh splints.
He has made amazing progress on what has been a very long road. The trick now is to keep him very active so that his foot keeps working the way it should. Reassess in 1 year.
Next up! 15 month scan results & Sailing!
— Joanne ward
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