As always we start with an update on Josh. He is now under so many different medical teams that everyone is starting to struggle to keep track of what is going on, so we will try our best to summarise it for you!
Firstly and perhaps most importantly his tumour was reported as "stable" following his latest MRI scan. We have mixed feelings about this, as obviously we still had hope that it would have shrunk following the proton therapy (the treatment can take up to 18 months to work) but unfortunately it grew immediately after the treatment and hasn't ever shrunk. Although it is now evident that the proton therapy didn't shrink the tumour we are very grateful that it is remaining stable and not growing!
The tumour is still causing Josh issues in a variety of other areas which are under investigation. The nephrology team are working alongside the pain management team to try and ensure Josh is comfortable at all times and are looking at potentially more surgery in the new year and a permanent catheter. Again we know that in the long run this is probably the best and most practical option for Josh, however we are all to aware that this option is very unappealing to a little boy!
The psychology team are going to spend some time after Christmas reviewing Josh at school before they complete their final assessments, so hopefully in the New Year we should hear back from them. Then we can see what can be put into place for Josh as he gets older to help him deal emotionally with the reality of living with a life limiting condition.
The orthopaedic team are still very undecided whether surgery is Josh's best option. They are very unlikely to operate on his hips, which means leaving them both dislocated and Josh unable to walk. They are in talks with spinal surgeons to look at the potential of operating to straighten Josh's spine (the tumour has caused a significant curvature of his spine). However this is very hypothetical at the moment as there are also risks associated with disturbing the tumour.
The neuro team haven't provided an update for some time and his VP shunt hasn't caused any more issues!
Otherwise Josh is doing well! We had the privilege of seeing him perform in his school nativity play this week, where he played a shepherd! I know we're biased but he was the best shepherd in the play!
Lonnie is still recovering from his chemo, and on the whole doing very well! He still has bouts of tiredness and sickness but we have been warned that this may continue for several more months yet.
We are disappointed that many of you reading this won't be aware that December is childhood cancer awareness month here in the UK. Although we are pleased to say that a decision has been made to move this to September next year to coincide with other countries around the world (please see previous blog post about this).
The sad truth is many people don't want to think about something such as a child suffering from cancer whilst they prepare for their own Christmas. Reality is that around 31 children in the UK are diagnosed with some form of cancer every week, including Christmas week. Perhaps even sadder is the fact that cancer is the leading cause of death by disease amongst 1-14 year olds. This means that many families are facing the Christmas season without their child.
We like happy images at Christmas time and don't particularly want to think about anything else.
We were reminded recently of how important image is to society when we received Josh's school photograph. We noticed that although the picture had been taken whilst he was sat in his wheelchair, the handles had been airbrushed out so that you were unable to tell it was a wheelchair. We were rather upset about this, and unfortunately the original images weren't available. It appears we live in a society where things that make us feel uncomfortable such as children in wheelchairs, childhood cancer etc can just be airbrushed out so that we can feel better. This has been happening for years, the Christmas story itself is often "airbrushed" to make it a nicer story for people and the reality of the event is often lost.
We would urge you this Christmas time, to appreciate everything you have. Please don't turn a blind eye to those who aren't having a happy family Christmas but think about the difference you can make in the lives of families you know.
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