There are a number of services you can access if your child on Avastin & is finding things overwhelming or is struggling with side effects etc and I have listed here some that we have been investigating ourselves.
NB; these services are applicable to England/UK only! I am sure if you are reading this from elsewhere in the world that your hospital would be able to advise you!
Local Hospital – Youth Groups
I think most hospital “trusts” run their own charity, many also run their own “Youth Services” also – this is usually in the form of youth Clubs, they might have different groups attending on different day. It is certainly worth talking to your oncology team and/or NF2 team to find out what local services are available and if you qualify to join in!.
Oscar has started attending a youth group here in Nottingham – they meet every week and the other children that go (varying age ranges) are kids that are all have chronic illnesses or going through treatment like Avastin, immunotherapy, chemotherapy etc.
Our club is completely free and they have a range of if things the children can do, like theatrical, drama, games, board games, sports, creativity, there is a tuck shop with treats and they arrange days out as well as residential activity camps, you just need to get referred and go to make friends and join in.
Over The Wall – Activity Camps for kids, Siblings and Families
Over The Wall Children’s Charity (otw.org.uk)
Over The Wall is a UK based charity for children and young people with health challenges and disabilities to discover a world of mischief and magic. We provide a safe place to step outside of comfort zones, establish friendships and build confidence through meaningful and exciting activities.
These amazing experiences are in-person at Residential camp, and also available online with Camp in the Cloud. And what’s more, it’s all free!
Therapeutic Recreation programmes focus on helping those who experience health challenges, to realise the incredible abilities and talents they possess, and all activities / camps are supported by medical professionals and well being support.
Seriously! Check out the website today and find out what they can offer!
NB – info received from them…
“Our 2024 camp applications are now live and you can apply for these through the website.”
Ellen McArthur Cancer Trust – Sailing Trips
Believe in a brighter future (ellenmacarthurcancertrust.org)
NB: Foreword – You will need a referral to join the Ellen McArthur cancer trips – Speak to your oncology nurse/outreach nurse. We have confirmed that those with NF2 are eligible to attend these trips if they are going through Avastin treatment.
The Ellen MacArthur Cancer Trust inspires young people aged 8-24 to believe in a brighter future living through and beyond cancer.
NF2 and its associated treatments can have a big impact on a young person’s mental wellbeing. The future can feel daunting and overwhelming.
For many, simply picking up where they left off before their diagnosis just isn’t possible. That’s when our work begins.
Any young person who has been treated for NF2 from across the UK can join us for a free transformational four-day sailing experience from Cowes, on the Isle of Wight, or Largs on Scotland’s West Coast. (You need a referral though from a trained oncology specialist or your outreach nurse.)
** As we know also that there may be no “end” point for the foreseeable future with Avastin infusions for NF2 and the trust takes this into account. **
Again, check out the website for them – Oscar is keen to have a go – your child might be also! (they also have options for siblings to attend) We have been referred and signed up for a first trip and are now awaiting details of when that could be, Oscars 2-weekly treatment though needs to be spread out to 3 or even 4 weeks
Other Services
It is worth having a quick google to see what else you can find and contact them for information or eligibility guidelines, there is lots out there – think Children in Need!!!, Or talk to your oncology team/nurse, they may be able to suggest things to you.
It would be fab if between us all we could get a list of these things.
All of these services that I have detailed are entirely free and many will even provide transport too so takes the stress and overwhelming feelings out of it.
—
This blog has been created as a way to share real stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at grace@nf2biosolutions.org or Joanne Ward (NF2 BioSolutions UK and Europe’s COO) at joanne@nf2bisolutions.org and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!
—