Clinic Appointment

So not much has been happening recently to be honest which is refreshing! We've had no major drama and Dylan has been enjoying being a normal 3 year old, playing with his brother and going to parks and playgroups etc. Yes the oxygen is making everything more challenging and me being the size of a whale is not particularly helping but he has been mostly a very happy little boy.. you wouldn't actually believe how sick he has been to look at him now if you didn't know!

We called the QMC on Wednesday to get some information over Dylan's chemotherapy next week as we hadn't heard anything for a while and wanted to make sure we got an early appointment on the Tuesday and that hopefully somebody from Respiratory would be around to review him and his oxygen requirement. However, upon making this call it landed us a clinic appointment with Prof. Grundy who was now back from his hip operation...

Now, he went off on his 'sick leave' just after Dylan's seizure when as far as he was concerned Dylan was stable enough to be extubated.. but of course he deteriorated and that didn't happen as planned. He was spared a lot of the details whilst he was off but heard it all when he got back and he failed to see what all the fuss was about looking at how well he is doing now! This is what I mean about it being unbelievable, you wouldn't think it is the same child.

The clinic appointment was mostly a waste of time (in a good way) because Dylan is doing so well. Prof. Grundy didn't seem to care about the oxygen and basically told us to take it off if he doesn't need it!! I've said we will discuss it all and get Respiratory to check him Tuesday as I don't want to make any hasty decisions without them assessing him. He has also dropped a few of the medications off that Great Ormond Street suggested in case of transplant and he has stated he would like Dylan to have another CT scan before his reassessment by them in August.

This is a bit scary but we are going to attempt to do it without ventilating Dylan so lots of time will be spent this next two months getting him use to the scanner etc. This will show us how the chemotherapy is working, particularly now we are not on as 'intensive' a regime and hopefully may show that he won't need a transplant and therefore won't need 6 monthly reviews at GOSH.

But what if it shows that things aren't improving? That's something that Mike has been worrying about since Wednesday.. I hadn't thought about it until he said it in all honesty and I'm the irrational one usually that checks Dylan over and over throughout the night!

LOGIC would state that Dylan is improving, he hasn't had a chest drain in now for 7 weeks, previous to this he had not gone longer than two weeks without one since it all started and that was before he got worse and treatment began. He is getting less breathless, has more energy and is eating and drinking better. His sats are improving, his oxygen requirement appears to be going down. He sleeps better and his breathing overall looks better than it has done in the last 5 months total... But unfortunately logic and reasoning don't enter into it when you've been to hell and back as a parent and you can't help but feel it's all 'too good to be true' or that you're waiting for the other shoe to drop...

I pray that never happens, it would be cruel and unfair to get all this hope back, all this improvement and to be back to planning our future just to be hit with more bad news or another deterioration. I guess that's how our life will always be though to a degree, as is the life of any cancer patient and their family.. Even if the disease goes you never know if it'll be lurking around the next corner waiting to strike again!