Two very good pieces of news at the hospital today.
Firstly, my DNA results are back and I don’t have the same mutation as Pudding, so it was a spontaneous change on his X chromosome. If I did have another son (which definitely ain’t gonna happen!) there would apparently be a slightly higher chance of MPS than in the general population but not the 50% chance of a carrier. It also means that other family members should be in the clear.
Secondly, after 18 weeks, we have finally been cleared for home treatments. We had no untoward temperature rises again today, so the combination of medications and slower infusion rates is doing the job. We’ve been sent home with a bag full of prescription potions, our medical fridge is already in place and assuming there is no hitch with arranging the delivery of the precious Elaprase (enzyme) we should be able to have the treatments at home starting next week.
So no more packing bags the night before. No more waking Pudding up early and giving him breakfast in the car. No more long commute (though this has definitely been easier the last few weeks using a volunteer driver from Patient Transport – these people are amazing). No more sitting in a hospital for hours. Instead we’ll be here and Pudding will be able to move around more with a mobile pump, while I can get on with other exciting things like the washing up.
It will be sad not to see the lovely nurses every week – but we will be back there again soon for clinical trial screening (more on that another time). And we’ll have other lovely nurses here instead.
And then this evening there’s a letter in Twiglet’s school bag explaining what activities they have on in the run-up to Christmas, and my eye is immediately drawn to the paragraph on the school play – ‘Following each performance we will be collecting donations to go to the MPS Society, a charity very dear to one of our families.’ Of course, I cried again. Lots of tears today, but happy ones for a change.
Now excuse me while I go shout from some roof-tops and do a tap-dance round the living room. Can you tell how happy I am?!