Nothing to cry about either.
An increase of 4%.
Not the 20, 30% of my dreams.
Not the 10% of my reasonable hopes.
But no stalemate.
No decrease.
After another two week course we are relishing in IV free times - more sleep, less schedule. Suddenly, everyday treatments feel like a breeze!
When I deaccessed him, his port site was sore, open and goey (it may be he needs a new needle size, as it looks like a pressure wound). It’s now healing nicely, TF (infection in the port would be very bad news).
He has started on a three month course of treatment to try and clear this fungal infection.
We’ve swapped the drug to one which is a little less toxic than the first week.
He needs to have blood levels taken to check we have the level of the drug at a therapeutic one, but not so high it fries his liver and kidneys.
The side effects still required an A3 sized drug pamphlet.
So far, so good.
New changes to his physio plan to try and shift the mucous better from his lower airways.
He continues to amaze me - don’t get me wrong, he is a moody teen like the best of them, but how he takes this all in his stride without complaining is incredible.
He is going away with school for three days soon - he’d lost a lot of confidence about being well enough to go, but these last few days, seems keen, more hopeful.
Daring to look forward to something.
He is better. He is.
Please let him stay well for this, he’s already missed out on too much.
Thank you for reading x
From our epic trek in Surrey - almost over £5000 now!
