In the two months since our last update Phoebe and Reuben have both completed half a term of full-time school and are ready for the week off next week, spending some of it with Uncle Jono and family in Scotland. For some time Reuben has been going to rugby training on Saturday mornings, and this term Phoebe has started her own Saturday activity, an art class which she enjoys and is suited to her skills and energy levels.
Over the summer she had a variety of medical appointments, and these continue from time to time - but other than that she has been in school all day every day. She continues to face many challenges as her brain has to work so hard to do everything – for instance learning spellings involves not only remembering the order of the letters, but how to write them, controlling the pencil, concentrating long enough to get through the list … you get the picture.
This week Rachel invited Jen to join her and Matt in a meeting with Phoebe’s class teacher, the school’s special educational needs co-ordinator and the clinical psychologist specialising in neuro cases at the Children’s Hospital. It was a very positive and helpful meeting as the psychologist explained the results of all the tests Phoebe had undergone over the summer and each of us was able to ask questions, contribute suggestions etc as to how Phoebe can best be helped to progress at school and in life generally. As a result, the teacher has already re-arranged the layout of the classroom so that Phoebe can do all her activities at one table instead of having to remember which table to go to for which lesson. Rachel is making a picture chart to help Phoebe remember which order to do things when getting dressed as she is very easily distracted from the task in hand. We were also reminded how much fatigue is an issue in being able to concentrate, and thus the time of day, or day of the week, or week of the term will make a difference to Phoebe’s ability to respond well to instructions and complete a task.
We are giving you this level of detail so that you can understand better the ongoing issues faced not only by Phoebe herself but the whole family as we seek to support and help her develop well.
Brain tumours are the biggest cancer killers of children in the UK, but the Government's spend on brain tumour research represents just 0.52% of its total spend on cancer research. It’s the kind of statistic you come across only when your own family is affected by this horrible disease. Rachel and Matt are supporting the Brain Tumour Research charity in various ways. Rachel bakes cakes and sells them each Friday to a local workplace. She is also running the Worksop half marathon at Clumber Park on 30th October, so if you’d like to sponsor her please do so at https://www.justgiving.com/
If you send Christmas cards you might like to choose some from the Brain Tumour Research’s website! Please forgive our shameless asking, but you can imagine this is a cause dear to our hearts!
Thanks!
Marcus and Jen
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We know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations may become your new focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.
_____________________________________________________________
We know that our journey with Phoebe is being repeated again and again in other families around the world, and that other people and situations may become your new focus and concern. If you no longer wish to receive these updates, simply click on the 'unsubscribe now' link at the foot of this email. Thank you.
