Jo Ward’s Avastin Blog
09 November 2023
My name is Jo Ward.
I have NF2 related Schwannomatosis, diagnosed in 1999. My youngest son, Oscar, aged 12, also has NF2.
I am writing a blog about Oscar's Avastin Journey called Avastin Diaries. I thought it would be interesting to document, in order to help and advise others who may need to go through the same journey in the future.
There seems to be a lot to organise even before the journey starts and the idea is to help others navigate the system better and give an honest account of what happens. Living with NF2, we need all the help we can get, don’t we!
I live in Nottingham and have 2 sons. I like travelling and enjoy gardening at home. My 2 boys & hubby have a love of football & are avid Nottingham Forest fans & season ticket holders. When they aren’t watching Forest, the boys are playing football for local teams, so a lot of life revolves around football and visiting NF2 clinics.
I have known about NTUK and their work for many many years since first diagnosis and have membership & follow them on social media.
Joanne Ward – NF2 patient, NF2 parent, NF2 community supporter, raising awareness for NF2
I volunteer at NF2 BioSolutions UK
where, as Chief Operations Officer, I look after the social media platforms, fundraising and grant writing & collaborate with other organisations. I make sure the website is kept up to date & is relevant & generally co-ordinate anything that needs doing.
NF2 BioSolutions UK
I am looking back on our experience on Avastin if you have been reading my blog. Whilst Avastin is not my ultimate first choice of treatment (and with NF2 we have very little choice), for the time we have been on it, it is doing what it is meant to be doing, by stabilizing the tumours Oscar has.
It has been a long road to get us to this point and I am fully aware the road is even longer, before we will be able to swap to anything alternative and we do not relish the option of surgery – because this too comes with long term effects and complications.
Hopefully we have shown that a good support network is vital in navigating this for children, getting professional NHS services involved like the community nurse, an outreach nurse to coordinate things etc and informing your child's school will all help with the challenges you may face.
It is important that health and wellbeing is considered for your child so that they do not feel overwhelmed, there are many services that are accessible through your oncology department at the hospital, or that your outreach nurse can signpost you to. It is a great for them to be able to meet other children experiencing the similar things, to know they are not alone.
Every 2 weeks for the last 6 months we have headed to the oncology dept for Avastin, our most challenging thing on EVERY visit is cannulation. We have had many ups and downs with treatment, have sometime been in the department for 2 hours, other times 5-6 hours. But through it all, Oscar has tolerated Avastin well with relatively few side effects and for that we are grateful.
I wanted to write a few words from both of us.
I asked Oscar what his expectations were before we started Avastin and he said “I hoped it was going to work”.
He is now “Glad that it's working”. This probably sums it up.
From my point of view, the expectation was that we “hoped” it was going to do what it needed to do and looking back, I too “am glad” it's working.
I know how lucky we are that Avastin is doing what it needs to do, I feel that we have been given some time while things are stable and for that I am grateful. I know of others whose journey has been completely different.
It’s not been an entirely easy ride though and the overwhelming take is cannulation problems, that has been our biggest sticking point in all this & the fact we won’t choose a port due to prioritising Oscar's well-being and his sports, that just add to keeping him emotionally well which has been so important to him & us.
Granted also it takes a bit of planning at times and every 2 weeks for infusions is a hard slog and can at times upset the daily diary of family life, but it’s amazing how quickly you get used to it.
But remember that very first post I wrote, organisation and support are very key to things going well.
AVASTIN BLOG 19 – MARCH 2024
Treatment 25th March
How can we be 1 year on from this? That year has gone immensely quick. Things haven’t really gotten any easier as such, but mentally Oscar is in a much better place than we were a year ago.
We requested an earlier appointment this time because it was the last day of term, it seems to have worked better and Oscar is suggesting we stick with that because his Forest School lessons are moving for the summer term to P4 on Thursdays. This will of course mean that we go to Avastin and Oscar then goes to school for the last lesson – so we will be trialling this.
It was great to see Shaz was on duty when we arrived and stats and numbing cream were put on immediately.
Cannula went in on try no. 3 with another new doctor – who also admitted that our cannula trials and tribulations are in fact due to Oscar having very small “awkward” veins – so I feel this is going to continue to be a bug bear for us.
Batman and Black Panther visited the ward today giving out Easter eggs to all the patients which was very nice indeed, treatment started at 12.10pm and we were home by 2pm!
Hands massaging a foot to stimulate blood flow before foot cannulation
Avastin Diaries – Blog 18 – FEBRUARY HAS BEEN HARD GOING!
Treatment 22 & 24
Despite it being the shortest month of the year we got to experience 2 Avastin infusions – now that’s unlucky!
Feb 1st was our first 4-weekly infusion. I had high expectations on the back of 2 very successful cannulations that we were heading in the right direction and had just about mastered it after 10 months ..... How very wrong I was!
We had fallen by the way side with fluid intake and had struggled with even 0.5 litre, let alone any more, anxiety was at an all time high, a very late lunch on infusion day meant we were rushing around at the last minute and I couldn’t keep all the plates spinning that I needed to, so we were both stressed out.
On arrival, stats were taken as soon as we sat down, which was brilliant & oncology was empty, but things went in a very downward direction thereafter.
The first doctor tried 4 times to get the cannula in, to no avail. Anxiety and stress levels were rising, so after many tears we decided to put more EMLA cream on, take a break & readjust things and request a different doctor to try,
After an hour wait a new doctor came to see us and with the help of the infra red machine, despite 3 more attempts the cannula was in – much to the relief of everyone including nurses, Play Therapist, doctor and us! Poor Oscar though resembled a pin cushion after a total of 7 tries.
Despite an empty oncology unit & difficulties it was 4.40pm before we started infusion so a late finish.
Feb 29th Rare Disease Day was the next Avastin. We were determined to not have any repeat of the last visit.
Oscar has been drinking at least 2 litres a day for the last week – (after my nagging), we had warm hands, less stress and anxiety ready for the next round.
Izzy was along to do our stats, we hadn’t seen her for a while.
We then saw a different doctor to do cannulation – he was actually very rude and strict with zero bedside manner, took one look at all the places we had put EMLA (that were the same places we had put it for the previous 23 infusions) – when he just said “no sorry, cannot see any veins in any of those areas” – no explanation just that! How very rude & inconsiderate and no way to talk to children.
He decided he wanted to cannulate Oscar's foot & with high anxiety it took a LOT of persuasion from me to let the doctor try this. (Play Therapist was not around today, so I felt added stress trying to keep Oscar calm), but eventually I managed to talk to Oscar round so we could try the foot cannula.
Happily this worked but not without lots of pain, discomfort and effort, but finally we were able to start infusions then. The lighter evenings meant we actually made it home before dark.
Having gone though this for nearly a year, I honestly do not know the answer to our cannulation problems. We do all the right things, drinking, warm hands, exercise, eating, but it's making no difference. Oscar does not want a port and it wouldn’t be good for his mental health. Any ideas greatly appreciated.
Up next issue – ONE YEAR ON! I want to reflect on everything from the past year and maybe also do a blog that has all the past year links in.
Avastin Diary 17 – January treatment & Scan results!
Treatment 21 – January 2024
Firstly a Happy New Year 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 some things 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). Doctor A then asked to do Oscar's 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 Addenbrooke's. 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.
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 6 months. 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!
Avastin Diary 16 – December & Scanxiety
Treatment 19 & 20 – December 2023
The first thing I wanted to talk about in the month's blog is Imposter Syndrome.
Imposter syndrome is the internal psychological experience of feeling like a phony in some area of your life.
So what am I getting at?
Well, we are sat in oncology (regularly) having Avastin and I often get the feeling that people think we are fakes – imposters and should not be here!
After all – Avastin is not chemo, is it?
Bevacizumab is a type of drug called a monoclonal antibody or an angiogenesis inhibitor. It is also used to treat some types of cancer. The reason that we think it is effective in the treatment of growing schwannomas in NF2 is that it stops the development of new blood vessels in tumours. This reduces the supply of oxygen and nutrients, which means that the tumour shrinks or stops growing. It does not prevent blood vessels from growing in other parts of your body as it works specifically on a chemical secreted by tumour cells (similar to how your antibodies work when attacking an infection).
So why do I feel like a fake? Well, I get the feeling we are largely ignored on our oncology visits. That we aren’t important enough, but of course have every right to be there. Often those coming to the day care ward at similar times to us (or after us) are treated before us – even if the unit is empty when we arrive. We are very often the last to leave the daycare unit. So I don’t feel we are treated the same. Maybe it is just me?
As you know, we also have several problems with regards to cannulation and (some) doctors could certainly use work on their bedside manner. Do they treat other patients the same??
Is it because NF2 tumours are benign?
Benign tumours are noncancerous growths in the body. They can occur anywhere in the body, grow slowly, and have clear borders. Unlike cancerous tumours, they don’t spread to other parts of the body.
But they can come with serious implications. People with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Seizures, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy, mobility problems, muscle atrophy ... & much more! Often nerve damage caused by tumours is permanent and life changing.
NF2 is a life long genetic condition There is no beginning, middle or ending to any of our stories, no remission or breaks. Treatment options are limited to surgery/ radiosurgery/ chemotherapy which often results in loss of function of the involved nerve. (That can literally be ANY nerve in your body!)
So taking all this into consideration, we have every right to be at oncology and to be taken seriously and treated like other patients. But I am still made to feel like a fake!
Please do let us know if this is the feeling you get too.
Our first treatment in December went ok and our favourite doctor was on, so some happy chats about Nottingham Forest – but we are having more cannulation problems. Dr Emmanuel suggested his veins were getting tired and needed longer to heal. I am therefore counting down the days until we might be able to just do this by moving to a different treatment pattern.
Our next scan is 5th January. And clinic January 8th and then we will find out whether we can spread this out so the veins can heal more between treatment.
Other than this, it was a straightforward treatment day.
On 21st December, we had a neurology appointment before Avastin, we then went up to daycare – but the numbing cream was put on a bit late.
Oscar has been down with a stinky head cold all week, so I mentioned this to the nurses. We were swiftly moved to a side room – so as not to spread germs to the cancer ward. His stats were all normal so we were allowed to go ahead with treatment.
The oncology doctor tried a couple of times with the cannula on the inner elbows but had no luck and she called for backup before anxiety settled in.
Then some kind of miracle happened!
We didn’t put numbing cream on hands this week because Dr E said to rest them, but the backup doctor suggested we try the hands – with the numbing spray. Now both myself and Shaz stayed talking to him telling him to remain calm! Telling him that it might hurt but if it did it would only be for a very short time. The Dr got the infra-red machine out and in darkness guided the cannula in spot on, yes it hurt for a few seconds then he realised after that it didn’t hurt at all.
I am so proud that he remained calm and did not get anxious and cannulation went fine – this is a first for us – hoping we have taken a massive step over the anxiety barrier plus the doctor was lovely and I made sure he knew how thankful I was, keeping Oscar calm.
So, remember I talked about Imposter Syndrome above? Turns out that they had now “forgotten” to take our treatment off hold, so we had to wait nearly 2 hours for them to get it through the system (treatments are placed on hold if they are unduly expensive – which Avastin is). I was not impressed! – so after the jubilation with good stats, good bloods and cannulation being done with very early – it was back to waiting. I don’t know if this is a something that happens for others that they have been forgotten about?
Treatment eventually started and we got home late and in the dark.
Looking forward to the lighter nights again!
Up next – January!, Scans and clinic – where we go from here?
I wanted to also write about the Sandcastle Trust.
The Sandcastle Trust walks alongside families living with a rare genetic condition to help them build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience
Check them out today! I found them when scrolling the internet for something else, but sounds like another useful place where kids and families can make memories and it's especially for those with a rare disease diagnosis.
Treatment 17 and 18 – November 2023
We managed to get a week's break from Avastin after our results, which was lovely before we were back to hitting the ground running again.
Shaz, Play Therapist, has been around in November for both treatments which has been a relief. I feel she is a bit of a backup for me with trying to help Oscar with cannulation, she kind of takes the stress and strains away, so it's always lovely to see her.
We had a lovely new doctor doing cannulation on 9th November and after the normal stats were taken, we got on with treatment and everything went well. The weather is getting colder now, so Dr Sarah advised Oscar to start wearing gloves when coming for treatment to make sure his hands are warm.
Our next visit on 23rd truly didn’t go like clockwork at all – in fact, a bit of a disaster. To start with ‘live transcribe’ my speech to text app wasn’t working because Samsung had decided to do a software update & the update is not compatible with the version of live transcribe on my phone – grrrr. Battles with the doctor and cannula followed this and a massive 5 attempts for the cannula. Oscar got so very stressed and anxious this time and even Shaz could not talk him round, we had many many tears and he ended up walking out of the treatment room extremely upset because he felt the doctor wasn’t listening to him.
I know many of you follow this journey and we are thankful that Avastin is doing its job keeping the tumours stable, but it really is gut wrenching sitting in oncology every other week watching the doctors trying to get the cannula in for the infusions, sitting and crying with such stress and anxiety because it won’t go in and having to try everything possible. You know how upsetting it is watching your child go through that, trying to reassure them it will all be ok? …. and hoping that actually it will be ok. Sometimes, many times in fact I am lost for words. I have to tell him, yes I want to take your pain away, but I am sorry I cannot do that and we have to find a way to cope – which yes means that getting the cannula in will hurt and for that I am sorry. But equally we are on a different wavelength together. I have been around NF2 for a long time now and I hope that I instil some resilience in Oscar to cope with these things, or indeed anything life throws at him. That he is brave and courageous and an inspiration himself. He has taught me many things along our journey together.
We have the option of a port-cath BUT if we go down that path, Oscar cannot play football because contact sports are not allowed with ports. I cannot take away the football because that’s the only thing keeping him going mentally, physically and emotionally. Sports and physical activity are ESSENTIAL for wellbeing. But Avastin is ESSENTIAL for keeping NF2 at bay.
We did eventually get the cannula in and did eventually start treatment, but it was a late & dark finish.
I am counting down the days until the next scan & results so we can spread this out more so that it does not become the burden it is at the moment.
Avastin Diary 14 – Treatment 16 and Scan Results!
Treatment 16 was on 19th October. It was our NF2 clinic on 9th October. So, we’ve just had our first scan after 6 months on Avastin (every 2 weeks) and had a video call with Mr Axon & Jools at Addenbrookes about Oscar’s results.
It’s good news. (Hurray!) … I can’t believe I’m typing that!
His 2 Vestibular Schwannomas (head tumours) and meningioma (also in head) have all shrunk by about 1mm – whilst this does not sound a lot, these tumours only grow 1-2mm a year – they are slow growing, so to get this result is amazing and also Avastin does not normally treat meningioma tumours – so I feel we got a bit of a bonus!
The c2 spine Ependymoma has reduced 5mm in response to Avastin – which again is an amazing result. His Ependymoma had a cystic component which reacts to Avastin, so it has bought the tumour to a more respectable size.
We continue with Avastin every 2 weeks still for another 3 months and we will then rescan. If all is well (they may stay the same size or shrink a little bit more – fingers crossed!) we may switch to a maintenance dose of Avastin every 4 weeks thereafter.
His NF2 team are really happy with the results and know he is feeling much better mentally being back to PE and football training after his foot op (a full 10 months ago). He attends our hospital youth club, meeting kids going thru similar to him & loving it. I might have just gotten school on our side too with Thursday catch up work. I feel we have some breathing space again.
As a family, we are also very pleased with these results and the tough year so far has been worth it to get this far.
Onto our infusion on 19th Oct, which started with the fire alarms going off when we got to the hospital, so we couldn’t go in for a short while!
We were then met on the daycare ward by a new signing nurse – she professed to only knowing a small amount, but that’s ok!
It went downhill from there and 6 failed attempts at cannulation by Dr Abba (he has a tendency to blame Oscar for failed attempts which causes Oscar so much stress and anxiety and makes things generally much harder and worse). Of course, we were also missing Shaz Play therapist – we haven’t seen her for a while.
We also had high potassium levels showing again in the bloods that were taken the previous day and they INSISTED they needed repeat bloods even though we have previously been told that high potassium is not likely. So that meant we would be in oncology for at least 3 hours.
So, lots of waiting around, Dr Abba called for backup with the cannula with Dr Emmanuel – who managed cannulation first time in the original place where the numbing cream had been – Dr Emmanuel is one of those special doctors who immediately puts you at ease, deals with children fabulously & instinctively and he and Oscar have great conversations about football & holidays.
As we had to wait for bloods to come back, we had our follow appointment with Professor Grundy – we talked about Ports again & declined any as Oscar prefers his sports activities – I think if anything, this last year proves he needs those for his mental wellbeing. We arranged a follow up in January 2024 to see how things are at the rescan.
More waiting around for bloods to come back before we were able to start infusing and finally it was 5pm – ready to start. A very late and very long one today and sure enough we were last to leave having been there since 11.30am.
These blogs are going to be monthly now and so will cover 2 treatments per blog.
Avastin Diary 13 – Scanxiety!
Treatment 15 – 5th October
Oscar has been enjoying more visits to the hospital youth club, making friends and is enjoying being back at football training and PE.
He also has been getting access to Forest School at school. Research in the UK into #Forest School and its impact on young lives, found positive impacts in connection with communication, social skills, physical skills as well as understanding and building concentration. Being out in nature and in the fresh air does wonders for mental health.
All of these things are doing wonders for his wellbeing.
On 27th September, Oscar had 6 month scans at Addenbrooke’s and also had a quick chat to the child psychologist about how he has been feeling. The scans went well, and we are awaiting results.
I got Oscar a new drink bottle this week, I can’t take credit for this as it was shown to me by a fellow NF2er who follows our TikTok social channel – give her a follow at “Council with Cam”. She has lots of useful tips for making life easier with NF2. Anyway, Oscar loved the motivation marking on the bottle and it’s encouraging him to drink a little more. (We don’t endorse any specific products btw.)
Bloods this week went very smoothly.
Dr Abba and Izzy were around in a busy oncology this week and one of Oscar’s friends from youth club was there. The cannula went in first time – we had more to drink this week right before cannulation so wondering if this makes a difference – we will test the theory!
Infusions went well and there were no clotting issues when the cannula was taken out.
Next up – treatment 16 – Scan results!
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.
Thank you to everyone who sent me information about side effects – this is the final call. We are collaborating with Nerve Tumours UK on this issue.
Avastin Diary 12 – And just like that it's 6 months in!
Treatment 14 – 21st September
After the last blog, when I wrote about the Hospital Youth Services youth club, Oscar was invited to have a try out and I am happy to say that he loved it. We had a quick tour of things, it’s a big building with lots of rooms for different activities, whatever takes the fancy. Games, crafting, pool tables, drama & productions, and a massive sports hall.
Oscar quickly made sure I left (not cool mum!!!) and enjoyed a couple of hours in the company of kids like him going through chronic illnesses, I am also glad to say they get a few treats along the way, not just when attending but days out – in fact we are going to have to miss the next day out at Alton Towers Scarefest because we already have plans, but need to look out on their socials for upcoming things! We also have to fit youth club around Oscar’s football training because they fall on the same night at similar times!
Not much else to say about treatment this week, other than daycare was very quiet so we got sorted virtually straight away. We had the same doctor (Dr Abba) as last week for cannulation (which went better than last week) and nurse Izzy was around for a few chats also.
Named Nurse Sam was around so she helped me complete my application to get Oscar a concessionary bus pass.
27th Sept sees our 6 month scan to see if the Avastin has been working and an updated hearing test. If the Avastin shows his tumours are stable, we shall continue but I am hoping to get 3 weeks between treatments.
Our picture today is a new sign in the Daycare Ward “There is a Superhero in all of us. We just need the courage to put on the cape”
Next up – treatment 15 – Sponsored by Scanxiety
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
Thank you to everyone who sent me information about side effects
Avastin Diary 11 – Treatment #10, #11 #12 #13 – The Summer Holidays
Treatment 10 - 27th July 2023
Treatment 11 – 10th Aug 2023
Treatment 12 – 24th August 2023
Treatment 13 – 7th September 2023
We hope all our readers have had a lovely summer and have managed to make lots of new memories. I am not too sure where the sun went to for much of it and we seem to be drifting closer to Autumn. School and college started for us!
Firstly, some good news. I mentioned Carly had been looking into the Ellen McArthur Trust sailing trips and she confirmed that Oscar is eligible to attend these, so we will be looking into them more and working out what dates we are able to attend and if it corresponds to availability. I think it’s a great morale booster for our kids to be able to attend something like this and help them deal emotionally and physically with things they are going through.
Over the last 4 treatments we have experienced differing problems again – so it’s not always been as smooth running as we had hoped.
We have had to deal with staff shortages in the oncology department – which meant our first treatment in the holidays took far longer than normal, despite an early appointment (& we wanted an early getaway – it wasn’t mean to be!). Hoping that this situation does not reoccur.
This treatment also saw a trained nurse doing the cannula (instead of the oncology doctor). She used a nifty little infrared machine today to locate Oscar’s veins, you ned a well-practised nurse or doctor though because it has to be done in the dark! (but it was fascinating to watch and see his veins and how she guided the cannula to the right place!)
We had a physio appointment that day also but because oncology wasn’t running to time, we never made it but she came to see us instead. We chatted about how Oscar had been and how the lack of physical stuff is taking a toll on his well-being and the hope, that by September, Oscar will largely be back doing all his physical activities.
The next treatment, 10th Oncology was quiet. Shaz, play therapist was on duty and Dr Emmanuel was also on duty – we think these are the dream team to rid Oscar of any anxieties! We had a great chat to both about our recent trip, Shaz had a new book for distraction and Dr Emmanuel manged to get the cannula in first time! Oh, happy days!!!
The 24th of August treatment saw raised potassium levels AGAIN in Oscars blood – but I have done further research on this and can ultimately say it's how they are taking the bloods using finger pricks. Other than that, we had no problems, Shaz was around to aid anxiety again. Our named nurse came for a chat and mentioned larger needles for finger pricks might do the trick.
More good news as we saw Oscar’s orthopaedic consultant with a follow-up about his foot operation and he has been given the go-ahead to restart PE at school, football training and football mentoring (at school), BUT he is strictly not to overdo things and no competitive play just yet, but this should have a massive improvement on Oscar’s mental wellbeing.
I emailed school before Oscar started back to:
- Advise of the PE situation
- Advise of our expectations for him being given work on Avastin Days (Because he was never given any catch up work in y7) – We start as we mean to go on!
- Make ourselves known to his new Y8 Head of Year
- Arrange a meeting late September to ensure everything is being dealt with satisfactorily.
Then just like that the school holidays are over!
Bloods were done at school as soon as Oscar returned and the first treatment for Sept was around the corner!
We had cannula problems again this week – possibly due to a different doctor that we have not met before.
Sian from the Hospital Youth Services came to see us after Carly’s concerns about Oscar’s wellbeing – the Youth service run a youth club for children going through treatment or chronic illness and she invited Oscar along. They do games, sports, camps, treats, day trips etc etc and Oscar is keen to explore this – something else to add to the list for us to explore.
We are also experiencing a lack of blood clotting when the cannula is taken out of Oscar’s hand – I need to investigate further as it had happened twice in a row, we make an exit to the door and blood pours from his hand all over the floor - not particularly good!
So as you see, it has been a bit of a mixed bag over the course of the last few treatments, still no continuity to the problems.
Next up – treatment 14 – Scans are due !
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
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 to as well as the common ones.
Feel free to reply on our posts or email info@nervetumours.org.uk and we will share with Joanne.
Thank you
Oscar
Avastin Diary 10 – Treatment #9 – The importance of mental wellbeing!
15th July 2023
Following our tough couple of weeks, it has 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 wellbeing.
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 wellbeing 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 Addenbrooke’s 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.
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, the 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!
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 to as well as the common ones.
Feel free to reply on our posts or email me at joanne@nf2bisolutions.org
Thank you
View of Nottingham Castle from Oncology
Avastin Diary 9 – Treatment #8 – It’s been a tough week!
29th 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 it’s 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 bit 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 4th July, Carly sees me on 11th 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. It’s 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!!
After an hour wait, Sandra did the usual stats BP, temperature, pulse & weight, plus urine. 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 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.
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 to as well as the common ones.
Feel free to reply on our posts or email me at joanne@nf2bisolutions.org
Thank you
Avastin Diary 8 – Treatment #7 – fuelled by “Where’s Wally”, VIMTO and Ice cream!
15th June 2023
It sure is a hot one this week! We had run out of numbing cream, and I had forgotten to collect some at our last infusion, so I spent a couple of days chasing Sam and Carly to see if they can get me some. Sam has done a GP prescription for me so I need to collect it from there, apparently, we should be able to get that on repeat prescription, so I need to investigate that.
There was a small mix up with communication, that Oscar had bloods done at school, so we had a couple of messages saying they were doing it at home, when in fact they were doing it at school, as usual during term time.
Carly also dropped off some more EMLA cream too, so when I also picked the prescription up from the doctors, it meant we had a good supply for the next few weeks.
We arrived at oncology and nurse Anna and nurse Emma were both on this week.
Emma did the usual stats: BP; temperature; pulse & weight plus urine and mentioned that play therapist Shaz was not on duty today but there was another play therapist on the ward to help with cannulation.
The doctor came to see us for a chat, checked Oscar's mouth and breathing and I mentioned that Oscar was taking hayfever tablets as the high pollen had been affecting him (I had remembered to take a pic that morning of the brand so she wrote down the info in his records). She mentioned that all Oscar's bloods had been looking great this week, with no problems.
When it was time for cannulation, the play specialist wasn’t available, so Emma gladly stepped in to read 'Where’s Wally' while the doctor put the cannula in. It took 2 attempts today and ended up being in his hand - no blood in inner arm today! … this seems to change like the wind!
Infusion started at 2.40pm.
Making sure Oscar is drinking lots, especially in the hot weather and today's choice was sparkling Vimto. We were eating our croissants & unexpectedly Oscar's last baby tooth fell out & they gave me a little bag to save it for the tooth fairy!
It was so hot today, that on the way out at 4pm, we called at the hospital shop for ice cream on the way home, then waited for the bus.
Review of Hand warmers from Amazon (see pic)
We got the individual handwarmers form Amazon and they seems to be really good, but can get very hot. But we like these and will continue to use them when needed (ie not when it's 27 degrees outside!) We were not offered a hot water hand bath so these are a good alternative with gloves.
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. 8 – Hoping for another smooth week!
More artwork in oncology
Avastin Diary 7 - Another learning curve - 6th treatment – 3 months in!
1st June 2023
It's half term this week and we managed a few days away at the coast while Oscar did his 5K challenge fundraiser.
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 (Addenbrooke's) 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 on duty, daycare doctor Omiama who had successfully cannulated Oscar previously.
We had a list of appointments on 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 Addenbrooke's for the 6m 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 6m (after 6m scan and results at Addenbrooke's)
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!
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!
Tiled artwork in children's oncology
Avastin Diary 6 – A BSL Nurse! – 5th treatment!
18th May 2023
Sam emailed to say she was doing Oscar's bloods in school this week & she asked how Oscar had been. We knew what time for Avastin this week as I had previously emailed them.
Hoping for a clockwork week this week, but it definitely wasn’t to be! Luckily I had a supply of food and drink today!
Oncology was a bit busy again today, I was immediately greeted by nurse Izzy, explaining I was deaf she proceeded to fingerspell that Oscar had come for his Bevacizumab – it got a bit long and confusing so we resorted to pen & paper like the olden days! – And I said Avastin is far easier to spell and remember!!!! (Don’t make work for yourself!)
Nurse Emma is on today also. We sat down, nurse Izzy checked Oscar's BP, temperature, pulse, weight, and urine. Izzy was fab! We had a great conversation that she had learnt some sign language a few years ago. I love it when people make an effort to sign or communicate with me being deaf. It really makes my day when people make such an effort, it’s the thought that counts – even if it's slow, not quite right or whatever!!!. I commended Izzy and said how lovely it was that she tried. She was great at fingerspelling and knew a few basic BSL signs – but it all makes a massive difference to me when I meet someone who may even only know basics! Just a signed “please” or “thank you” is great!
After the usual checks, the on-duty doctor came for a quick chat and to make sure Oscar had been well. She talked about drinking and especially how it was even more important now the weather was warming up.
We then tried for the cannula at 2.45pm, but more problems after trying 3x in both hands!! Oscar got very upset this time and cried because he was having a difficult time. The doctor spyed a nice vein in Oscar's inner elbow/arm so it was decided to put on the quick numbing cream on there and try again.
We had a small wait for that to work before finally 3.45 and the cannula was in but it was a messy affair and lots of blood this time. I had a feeling Oscar was going to be showing some bruises from all the prodding.
Oscar finally started his 30min infusion.
I was right about the bruising though which appeared Friday morning.
Learnings from this week…….. (Another steep learning curve)
- Expect the unexpected still!
- Need to try and get to the bottom of the cannula problems and why its not easy because when we have cannula for MRIs & there is no problems – so need to investigate 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. Oscar wasn’t particularly affected by this, but its something we will look out for in future.
Next time –Avastin no. 6 – Half term and 3 appointments!
Wellbeing board in Oncology daycare
Avastin Diary – Waiting & Trainees – 4th treatment!
4th May 2023 – This week we had physio before Avastin treatment.
Sam had delegated Oscar's bloods the previous day to a colleague and we made sure drink was the order of the day and warm hands. Oscar is managing to drink 2-3L daily (when reminded). Carly emailed to check all had been going to plan too.
Physio meant we were at the hospital earlier than planned. Oscar had a major foot operation in December, and he is learning to walk properly, and our physio offered to coordinate visits on infusion days to prevent more time off school. So, we spent nearly an hour with her before having a cuppa in the restaurant. I then remembered (just) to put the numbing cream on. We also tried out some hand-warmers that I got from Amazon! Will review those as time goes on.
After the last treatment went like clockwork, I was expecting similar this week – BUT note to self!!!! …. “Expect the unexpected”
Oncology was a bit busier today, Nurse Emma is on today and she has a trainee with her. We sat down, the trainee checked Oscar's BP, temperature, pulse, weight, and urine. Nurse Anna and Dr Emmanual were not on today.
After the usual checks, we had a wait then before we saw a different oncology doctor (I didn't catch her name), but she managed to get the cannula in first time, in the right hand, in the right place & the bloods flowed.
Then we waited, and waited, and waited. Waited a bit longer! …. And a bit longer still until there was no-one there except us!
After getting to oncology in time for our 2.30pm appointment, Oscar finally started his 30min infusion at 4.50pm.
We finished the infusion & wash by 5.30 then the trainee took his cannula out and did the end of infusion checks – so this took a bit longer than normal too. Finally, we got home about 6.15pm. It had been a LOOOOONNNNG afternoon.
Learnings from this week…….. (Another steep learning curve)
- Expect the unexpected!
- ALWAYS take food & drink (we expected to be just as quick this week so hadn’t taken any supplies)
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. 5 – Hope it’s a teamwork week!
Bluebell keeping Oscar's hands warm
Avastin Diary –Its all about Teamwork - Third treatment!
20th April 2023 – The weeks are really going fast, and every 2 weeks comes around quicker than you can imagine!
After the last treatment we managed to get a few days away at the coast, its just what was needed after a busy few months! Oscar didn’t get any side effects, so we were just able to chill!
We were on the case this week following the previous complications. Drinks like they are going out of fashion – Oscar made a list of what he “wants” to drink as opposed to what I want him to drink! and we got loads of advice about keeping hands warm from the NF2 community – who continue to be AMAZING for advice!.
Our community nurse, Sam, came the day before infusion to take Oscar’s blood test at school, she texted me to ensure all was ok first – with instructions to drink, drink and drink and ensure hands were kept warm.
Avastin day, I collected Oscar from school, put his numbing cream on at home, put gloves on him and we arrived to an empty clinic! (We had walked up the 16 flights of stairs (4 floors) as apparently exercise gets the blood flowing!!!)
Anna, the oncology nurse, was on duty again, she came to see us, did BP, temperature, pulse, height and weight check followed by urine check.
We saw Dr Emmanuel again and had a quick chat about side effects and today’s infusion before putting Oscar’s cannula in. Took 3 attempts today as there seemed to be a lack of blood in his right hand (luckily I had put numbing cream on both hands – bonus points to me!)
We were then ready to start. As Oscar had tolerated it well last time, the infusion time was bought down again to 30mins this week.
Just 1.5 hours from start to finish today. Bluebell bear accompanied us to oncology this week & ensured Oscar kept his hands warm! It was all about the teamwork this week and sticking to the advice the NF2 community had given us!
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. 4 (but physio first)
On the PlayStation!
Avastin Diary – Second treatment
6th April 2023 – Wow the days are just flying by and just like that we got to week 2
It was a busy few days prior to that. I had a meeting at school with our SENCo and outreach nurse Carly and our NF2 Nurse attended virtually, this was basically to give the school information about Avastin, side effects and how Oscar may be affected and why he needs it. It was a really good meeting, and I would suggest if your child is starting Avastin or taking it, then a discussion of this type with school about it goes a long way to understanding. It allows him to have a toilet pass and a time out pass plus more freedom with what he is able to drink in the day.
Our community nurse, Sam, came the day before infusion to take Oscar's blood test. For children, they use the fingerprick technique. Oscar was quite uncomfortable with it at first (as it was all new), but we soon got a couple of good small tubes from him for blood tests. Sam also gave me a good supply of numbing cream and dressings so that we can put the cream on before going to Oncology to save time. And she also called them to check what time we were due in the following day.
Sam takes those to the hospital so they can be tested prior to infusion.
Later that evening I got a text from Oncology saying Oscar’s blood test has been spoilt in transit and he needed to be taken that evening to get another test done. So, a 9pm trip to oncology ensued and another test was done!
Infusion day was an early start, 8am to put the numbing cream and dressings on at home then 8.30 we arrived in clinic, so we took some lovely breakfast croissants and coffee with us this week.
After checking in Oscar asked one of the ward staff to set up the PlayStation for him, while we got comfy waiting.
Anna, the oncology nurse, came to see us about Oscar’s blood test saying that sometimes it congeals, and they cannot use it to test which is why we had to repeat the test. After that she did BP, height and weight followed by urine check.
We saw Dr Emmanuel again and had a quick chat about today’s infusion before putting Oscar's cannula in.
Well that turned into a disaster! Along with the congealed blood, they couldn’t get the cannula in where we had put the numbing cream (mainly due to the re-test, the area had become inflamed) and several tries followed in the same hand, different veins, then tried his elbow area (& back of elbow – a new one on me!) and literally nothing worked, so we resorted to the other hand which had no numbing cream on. Oscar was very brave (& squeezing my hand with some numbing spray) and eventually we got it in – phew!
Another massive learning curve and great advice from the NF2 community
- Ensure hands are warm (they can supply gloves, warm bowls of water etc)
- Ensure plenty of fluids for blood test AND cannula.
So now we’re on the case or the future!!!
We were then ready to start, as Oscar tolerated it well last time the infusion time was bought down to 1 hour this week and Oscar happily played the PlayStation and we ate breakfast in relative peace!
And for a Brucey bonus, Oscar got given a packed lunch and Easter egg from oncology!
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. We definitely need to up the drinking game for bloods and cannula and make sure hands are warm for needles.
Next time –Avastin no. 3
First treatment for Oscar
Avastin Diary – First treatment
23rd March 2023 – the date will be imprinted on our minds for all the wrong reasons because this was the day we started Avastin (immunotherapy) treatment for Oscars progressing NF2 in the hope that we can halt the growth of his left Vestibular Schwannoma, the cystic Ependymoma and preserve his hearing.
The day started with a text from the oncology day-care ward mentioning there may be a supply delay when we get there.
We arrived about 11am and the oncology staff were expecting us – I didn’t catch the name of the nurse looking after us for the day. There was some nice comfy chairs to wait and there were a few others in the department also having treatment. The nurse told us about the department, where the toilets were, kitchen and the playroom and she checked Oscar's temperature, BP and pulse rate.
We met the duty doctor Dr Emmanuel who asked a few questions to Oscar, mainly about mobility and coordination and listened to his chest & heart.
Oscar then had his cannula put in using numbing spray and they did a blood test.
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
Oscar said he didn’t like the spray so next time we will get EMLA numbing cream and perhaps put it on at home. He was also asked to do a urine sample.
Dr Emmanuel then advised Oscar would need a bone X-ray – which determines Oscar's “bone age” – so if you are having your first visit for Avastin you MAY need a bone X-ray. Luckily, the childrens X-ray department was not busy so we got straight in for this.
Back on the daycare ward, we briefly saw our Outreach nurse Carly and she came to check we were ok.
After a very, very long wait (5 hours) amongst all the tests and xrays etc, we finally got the go ahead to start our first infusion which was delayed due to blood test results taking approx. 3 hours to be returned and delay in getting the treatment from the pharmacy.
The infusion took 1.5 – 2 hours.
Altogether we were in the daycare ward for 7 hours! – it was a mammoth day!
Thoughts for our next treatment
- Get your oncology team to refer you to the community nurse – they will do blood tests the DAY BEFORE Avastin treatment (this will greatly reduce the amount of waiting around). From now our community nurse (Sam) is doing Oscar's blood tests during school time AT school the day before treatment.
- Take a packed lunch & snacks and some drinks with you – it’s a very long day! Drinking is especially important for those taking Avastin.
- Make sure phones are fully charged (or take chargers with you)
- Take something to “do” …. A book, school work or something else – there is A LOT of waiting around. A children’s ward is likely to have a playroom/toys/books/lego etc for children which might keep them occupied.
- Put numbing cream on prior to going to the daycare ward
One of the side effects that many told us about is tiredness and fatigue after treatment. Oscar wasn’t particularly affected by this on our first visit, but its something we will look out for in future.
The community children’s nurse visited us at home to arrange getting Oscar's blood tests done in school the day before treatment.
Next time – School meeting and Avastin no. 2
Oscar's scan
Welcome to our Avastin Diary
Just a bit of context, Oscar has bilateral VS (Vestibular Schwannoma), one of which grew 5mm in 1 year, C2 ependymoma which grew 7mm in 1 year and is turning cystic and a slight hearing loss.
(What is Avastin – see notes below)
Other NF2 related things – T2, L5, S1 schwannomas; parafalcine meningioma; small left cataract; foot drop; left sciatic nerve dysfunction; muscle atrophy – left leg
So our journey into this started in November 2022 when the latest scan showed growth in his Left VS and Ependymoma.
We had to start by getting agreement from the other 3 NF2 centres in the UK and that took 8-10 weeks. (For paediatrics, ALL NF2 centres have to agree – Oscar is 11 at the time of writing)
After the agreements came through, our NF2 consultant (at Addenbrooke's) wrote to our local hospital oncology department and explained the need and background about Oscar, it took a couple of weeks for an appointment to come through.
During that time, I was able to source lived patient experience from our fabulous NF2 UK support groups (details below if you want to join) from those who had already been on this journey. They gave loads of really good tips and advice about what we needed to do to make this as smooth a journey as possible and to run like clockwork. Because let’s face it, a visit to Oncology every 2 weeks for a day is a huge lifestyle change and it was something that was quite daunting to our family and family life.
One of the big questions we had was did we want Oscar to have a port-a-cath (see info below). Oscar is an avid football player and we had already been advised against contact sports if a port is fitted, so this was something we needed to explore as well and to find out if his club allowed players with ports to play on their team.
School was also another big thing. I would strongly advise any parent with an NF2 child to register/refer themselves to the SENCo at their school and give them information about NF2, what it means and how your child is affected. This gives the school time to digest information and ask questions as to how they are able to best support you and your child. Even if your child is not on Avastin I would still recommend you refer to the SENCo (SENCo are there not just for learning difficulties but they are able to help with physical things also, also mental wellbeing etc)
So, we self-referred to SEN at Oscar's school and had a meeting with her and the school head about what treatment Oscar was going to need for his NF2. They suggested a multi-agency meeting between Oncology, our NF2 team and us to discuss things when everything was set up.
Fast forward a bit to our Oncology appointment in our local hospital. Having been around NF2 for 22 years myself and having lots of my NF2 “family” on Avastin I knew quite a bit but I had a list of questions at the ready anyway. The oncology professor was really good and made sure he spoke to directly to Oscar (bonding over a mutual love of Nottingham Forest) as well as me (took my phone with live transcribe on as I am profoundly deaf) and explained what Avastin was, and we discussed a start date. Oscar had his height and weight checked and we met the oncology nurse, who was assigned to us, called Sam. (Made sure to take and give emails as she won’t be able to speak to me by phone as I am deaf). I then signed consent forms for Oscar – he signed them too! [They’re still referring to Acoustic Neuroma here!!! – I might educate them and say they’re actually called Vestibular Schwannoma]
We discussed Oscar having a port-a-cath and the Oncology Professor said Oscar would not be allowed to play contact sports if he has one as he said its not really safe, so we all agreed the Oscar wouldn’t get a port because he loves playing for his team. And he plays for the school team too.
I managed to ask all my questions too
- Oscar will be able to have numbing cream for the cannula
- Our clinic Avastin day is going to be Thursdays as that’s their “solid tumour” day
- We are arranging for pre-Avastin tests to be done BEFORE our infusion days
- School to be contacted by the Oncology team about supporting Oscar
- First treatment will be about 3 hours in the dept, but we should get quicker as time and routine allows.
Our Oncology name's Nurse is called Sam and she seems very switched on with things and was able to happily answer all my questions. She is aware that things are very daunting for us and was able to reassure us that she has dealt with children in Oncology for a while and will be able to put things in place to help us along. We left the meeting and she said she would be in touch to arrange things more. I reminded her to speak to the oncology team about my deafness because I am going to be the one (mostly) taking Oscar to his Avastin infusions.
So after that, the oncology team decided they needed a baseline scan (Oscar was due one anyway in about a month), so things got postponed while a scan was arranged.
In the meantime I was contacted by Carly who works for CLIC Sargent who are the outreach time – currently I am not sure of their entire role, but Carly will be liaising with school and telling them about Oscars treatment, how to support him and what it means, how we can all manage side effects etc. She also supports the family of those going through treatment for the duration of treatment and she is able to liaise with different departments etc to get answers about things and the oncology team also liaise with her.
So after the scan, the oncology team contacted us and we start treatment on 23rd March. It seems so close and real when you have a date.
I have asked more questions to those on Avastin, we’re taking a packed lunch in because we are going to be there a few hours, although I am told they supply tea & biscuits – I’m sure Oscar will love the biccies!!! And I have also a vague idea if what will be happening, tests etc before the treatment. I will detail those in the next blog.
And I have gone through my diary to see how this impacts us as a family over school and holiday times knowing that we will need to be around at home during some time of the school holidays.
Now I am trying to arrange the mutli-agency meeting at Oscar's school. I am keen for Oscar not to get left behind in classes he will be missing on infusion day or if he gets really tired after treatment – which I know is a side effect, so its also a chance to discuss what plans the school will put in place to ensure he is still able to access education in those lessons like his peers. I am keep to get an IEP (Individual Education plan) in place. Others have suggested an EHCP (Education Health Care Plan), so I am not sure yet which is going to be best at supporting Oscar.
So as you see quite a bit has been happening before we even start Avastin infusions and there are quite a few people to contact and sort things with, which again, make it seem very daunting! But I think we are about ready to start!
Next Blog – Our first Avastin Infusion!
Our UK support groups are:
(For our NF2 Patient community) UK NF2-SWN Patient Network | Facebook
(For parents, carers, friend and family of our NF2 Patients) UK NF2-SWN Network | Facebook
What is Avastin
Bevacizumab (Avastin) in Neurofibromatosis Type II | CUH
Avastin is a type of drug called a monoclonal antibody or an angiogenesis inhibitor. It is also used to treat some types of cancer. The reason that we think it is effective in the treatment of growing schwannomas in NF2 is that it stops the development of new blood vessels in tumours. This reduces the supply of oxygen and nutrients, which means that the tumour shrinks or stops growing.
It is important to note that Avastin is an immunotherapy drug (not chemotherapy), but the side effects from it can be exactly the same. Avastin is used to treat many “tumour related” conditions including cancerous and benign tumours.
What is a port-a-cath
Portacath - care of your portacath | CUH
A portacath is a type of central venous line which is a soft, hollow tube that we place into a large vein and leads into the heart. The line can be used to give you fluids, blood products and medicines, and to take blood samples. It is designed to stay in your body for many months or even years.
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