Max last had an MRI scan on 5th July and the MLB (or bronchoscopy) was before that, so it has been just over six months since anyone has had a good look at what is happening with Max’s tumour. His oncologist and ENT surgeon are keen to continue to look at the tumour routinely on a six monthly basis. Also, a couple of weeks ago Max seemed to be losing blood from his mouth and nose and on one occasion from his ear. There wasn’t copious amounts of blood but significant enough amounts to prompt me to mention it to Mr Daya as I thought it was probably from the tumour in some way or other. Mr Daya agreed that it probably came from the tumour and that Max might need some cauterising so he didn’t want to delay with organising the bronchoscopy. Mr Daya and his secretary managed to convince the MRI unit to open especially for Max on a Thursday, which is Mr Daya’s main operating day, when normally they only do scans on a Monday or Tuesday. So everything was set up for last Thursday 26th January. Max, Justin and I trooped into hospital at 7.30 am, Max went to the MRI Unit at 11 and from there went to the operating theatre where Mr Daya was waiting for him. He was in recovery by about 1.10 pm. He was very, very sore and very, very cross. We won’t get the MRI scan results for at least another 6 weeks, but Mr Daya had something to tell us straight away. Apparently the top part of Max’s airway, at the back of his tongue, is pretty much the same as before, however the lower airway has changed dramatically in that Max’s cartiledge is so much stronger, and he is stronger in himself, that the pressure of the tumour is not forcing his trachea (windpipe) to collapse any more. There is no evidence that the tumour is smaller in any way, but just significantly that it isn’t putting his breathing at risk the way it was this time two years ago. This change is also reflected in our now rare visits to hospital and A&E when once upon a time they were so frequent.
The other recent change has been with Max’s gastrostomy and we now finally have a ‘button’ but unfortunately it leaks regularly. Whilst we were at St George’s we tried to get it seen so that it could be fixed, but there appears to be no easy solution. Max’s gastrostomy has been a problem since December 2003 and we so desperately need it fixed especially as the more Max moves the more we need it to be secure.
I had no pictures to attach to this entry but I rather like this picture which we recently got a copy of from Justin’s mum.