We made our long trip today up to The Christie (Specialist Cancer Hospital) in Manchester today. Josh's tumour has been reported as "stable" following his latest MRI scan. We are obviously pleased that there is no new growth, however we are still frustrated that it is bigger than when we went for the proton therapy. We have been warned that the tumour is very unlikely to remain stable and is most likely to grow again, we just have no idea when! This makes every MRI scan very stressful as you spend the whole time sat there wondering if this will be the time or not.
The tumour is continuing to cause Josh problems, the main one recently has been with his VP shunt. Josh has been suffering with headaches and vomiting for a number of weeks which resulted in him being admitted to Manchester Children's Hospital for further investigation. For those of you who have been following his journey for years will know that Josh tends to develop blocked shunts on a regular basis - and they very rarely present in the typical way! On this occasion he spent time on the neuro surgical ward where his shunt was flushed, thankfully this was enough to clear it and it now appears to be working normally! This has resulted in Josh missing yet more time off school.
It is still unclear what the plan is from the nephrology team, as they are wanting to pursue further surgery and a permanent catheter. As we said before we have mixed feelings about this as although we acknowledge in the long run this is probably the best and most practical option, we are all to aware of how unappealing this is for a little boy just wanting to be "normal". No definite decisions have been made as Josh's oncologist wants further discussions to happen first. In the mean time the nurse specialists are working alongside the pain management team to keep Josh as comfortable as possible.
We are still awaiting the final report from the psychology team as to 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. (As are we!) They are very unlikely to operate on his hips, which means leaving them both dislocated and Josh unable to walk, as unfortunately surgery is unlikely to actually improve the situation enough to justify the problems it will cause. 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.
Further discussions are going to continue over the coming weeks with the neuro team to look at what the best option is as Josh is very keen to be a "normal" child who can walk.
Otherwise Josh is doing well!
Lonnie is also continuing to do well, his most recent blood results now show that he is in remission which we are very grateful for! He is still suffering with some of the side effects of the chemotherapy treatment but these are improving over time.
We did have a giggle over it all recently when I phoned the new NHS 111 service to obtain an out of hours GP appointment for him. As the wife of an ambulance man and after listening to the many news reports on this service I was very sceptical when I rang them. However I was pleasantly surprised at how efficient they were, the call was answered quickly and the call handler was most helpful. It did become apparent very quickly how scripted it was, which became very amusing when the gentleman asked me if the patient was "breathing". I heard this as "bleeding" so answered no which caused a lot of panic from the call handler! Luckily I soon realised what was going on when he asked me to commence CPR and corrected him! It was defiantly a lesson for both of us in the importance of speaking and listening clearly!
Overall we are generally quite disheartened that Josh isn't doing better and is still suffering from the side effects of cancer we are very aware of how much better he is doing than other children. We have seen many children who we have been on this journey with sadly lose their brave battles so we are grateful that we are able to fight another day! Although the future is very uncertain we are certain of one thing that we won't give up hope!
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