It’s Day +30 today, which may not carry much particular weight medically, except perhaps prompting another chimerism test, but feels good to have reached – albeit in hospital! Sadly the ‘3’ and ‘0’ balloons we used previously are at home, and I’m not, but it still feels like an achievement to have got through the first thirty days relatively unscathed.
There’s no way, though, that we could have got to this point without the incredible, uplifting and vital support of so many people. Our hearts have been deeply touched by such phenomenal shows of love and generosity throughout this process, and we are humbled to see how many people care so much – our hearts could explode with so much kindness.
And that’s not even mentioning the very practical support provided by friends and family – even those we have not known for long. We only met Lorenzo’s parents 15 months ago at his wedding to Jagoda, but have felt so touched by the beautiful messages of support they have shown. To top it all, though, they sent a mountain of absolutely delicious homemade biscuits and jam with L+J, infusing our tea times and breakfast with their love and generosity. Lorenzo and Jagoda, of course, more than kept up the Saccucci record of love and kindness by pretty much sorting out our lives last week. Words seem too little to express just how much that support means to us – thank you!
The doctors are pretty happy with the state I’m in, as my temperature’s stayed down, as have infection markers. Antibiotics are stopping, and hopefully I’ll get home in the next day or two – as long as I remain ‘well’…
Meanwhile, the wavering needle between whether my rashes are the result of GvHD or of a drug allergy has swung towards the latter, so I’ve stopped septrin (a tablet taken three times weekly to protect the lungs), to be replaced by a monthly inhalation of pentamadine, which does the same thing. We’ll probably have some results of the skin biopsy on Tuesday, which may clear things up – which is what the rash seems to be doing, too, since I started on steroids and steroid creams.
There may well be other temperature spikes and returns to hospital in the next 30 or 60 days and beyond, but every day we get through seems a huge step in the rebuilding of my immune system and towards a greater independence from medical support.
It’s so much easier with such fabulous people behind us all the way – thank you all, and Happy Day +30!