Thank You

As things start to return to normal, I'm conscious that we've not really gotten round to saying thank you to you personally just yet, and having said that, we're constantly thankful for all the amazingly kind things people have done for us all.

Leo is doing okay after his final chemo although his temperature if still hovering between 37.5 and 37.9 so it'll be interesting once his bloods start to drop and his immune system weakens to zero next week or so.

We also ha another follow up with the Eye Hospital today and after enduring three different doctors and multiple tests, it was a good day. Leo did so well doing the tests themselves...think normal optician tests multiplied by about ten, plus you're age 3! He did us all proud and the staff at the Bristol Eye Hospital, whilst obviously very interested in Leo's case, were very patient and keen to ensure he was calm and remained so.

The good news is the sight in his right eye has improved slightly from the tests of three weeks ago so that is promising. The on-going concerns are over the continued photo-sensitivity, plus his eye lid of the right eye is starting to droop, but only slightly. His eye also tends to 'shiver' at times, but only slightly and only if you were looking for it.

The eyes docs are not sure why the droop is happening although this did happen at the beginning before and during diagnosis. It could be due to a number and combination of things, but only time will be able to tell us. The eye lid droop could be muscular damage done by the tumour itself at the beginning but then we're not sure why it's started to do it again, as it appeared that the lid had improved and was the same as the left eye lid. Could it be new tumour causing new problems or should we not be thinking about that just yet? Nothing ws mentioned along these lines but you can't help wondering / worrying. Where the 'shiver' has come from is also difficult to point a finger at as again it was a problem which happened at the beginning but was sifnificantly worse than it currently is. We're back for more repeat tests in three weeks to keep an eye on things (forgive the pun!)

Sounds so inane, but we're very grateful that we have your support in many ways, but we're also so grateful to have the NHS. Leo's care with the NHS has been awesome and the only criticism is on the massive burden on the system as whole which impacts on children's treatment.

There is a significant constant pressure on doctors for beds, even in paediatric oncology, where children's treatment 'may' be compromised due to ward closures elsewhere in hospitals. Therefore if a child is due to have chemo over a given period but all ten beds are taken up by children with infection, those children cannot be moved elsewhere. It's too dangerous to administer chemo on a non-oncology ward and so if children with infections cannot be moved or discharged for clinical reasons, children's chemo treatment can be disrupted.

We've been fortunate but even last Friday we'd already been told Leo could not start his chemo until maybe Sunday, and yet an hour later, we were called to get Leo into hospital as they'd found a bed on the Bone Marrow Transplant Unit. Leo's chemo protocol has to be done on time to ensure optimum treatment, hence the many incidences of GCSF to ensure his bloods were safe for him to have the chemo.

Anyway, I've gone on and on, but what I wanted to say was thank you to one and all, and to the fact that we are in the UK with free at point-of-service healthcare.