But.... Isaac is still not well.
During the Gastrograffin explosives of last weekend, he came out with a rash, all over. Our best guess at the moment is that it was due to the new medicine (we hope side effect, rather than allergic reaction, as we'd like to be able to keep this drug in our arsenal for future use). He's also been tested for other possibilities, and we await blood test results for those, none of which would be good news.
His tummy is much better (lots of other extra drugs to help avoid more DIOS) but the best thing about the last few weeks is that his chest has been great (and sorry guts, but you are a poor distant relation to those regal organs that we call lungs. In other words; Lung health is the booyaka of CF).
But now he is coughing. Really coughing. And, I can't quite believe this, but it very much looks today like he has tonsillitis again. That in itself is not strange, but the fact that he has had tonsillitis for the past two years at exactly the same time (as in, he breaks up from school, we plan to go away, and boom, he gets tonsillitis, which in turn gives him a crappy cough and we end up in for more IV's). I so don't want the same summer again! Please let me be wrong. Is tonsillitis even seasonal?
Some happy news. Spent today at a party that Starlight throw every year (read here about our experience with Starlight, an amazing charity who makes dreams for kids living with illness come true). Was so much fun. Isaac threw up in the car on the way down, coughing too hard, and struggled all day, but still wanted to stay and even played a little football. The girls got the most amazing face paint, and had a ball.
Tomorrow we were due to go camping for a week, with some of our bestest friends. But after months of good weather, the forecast for the next week is just terrible, so we're not sure what to do. It makes me all the more sad for the kids, as the last few weeks has been difficult enough, for all of them in different ways. And we can't afford to do anything but camp right now. Isaac may not be well enough to anyway (back to the Dr tomorrow), so it may be beside the point, but the saying it never rains but it pours seems annoyingly apt right now.
I know deep down that none of the above is insurmountable. We can and will cope. He will be OK. Things will get better. But also, I must admit I'm struggling. Missing a lot of work (so spending evenings catching up), feeling worried all the time. It just feels like the breaks in between the problems are getting fewer and far between.
Merriness will resume shortly, I'm sure x
ps; People have asked about the clinical trials that I spoke about previously; no news yet. But still hopeful for something to happen this year, it's a question of where right now. It looks likely that we will have to travel outside of Cambridge, and unfortunately not in London either.
