So it’s been over a month since the one year anniversary of Seth’s bone marrow transplant.
Since my last blog (which was a while ago- apologies!) we have stopped quite a few medicines and stopped the immunglobulin infusions. Which is amazing progress! After Seth’s first transplant we were told that he would need the immunglobulin infusions for life because he would never produce B cells. However, this transplant has basically reset everything and he now produces his own B cells! Amazing!
Also no sign of GVHD! So we can relax a bit.
Seth is continuing to love school and we have been able to have our first family holiday since the transplant and Seth has been able to have his first plane ride!!! It was such a lovely holiday Seth has the best time!
However, as per ‘sods law’ two weeks before we were due to lace for holiday Seth started spiking high temps of 39 and 40. Paracetamol wasn’t bringing it down but ibuprofen was. He was started on antibiotics for a potential infection in his button (a line foof into his stomach for his milk feeds and medicines). This helped and the temperatures stopped. But then on the Monday before we were due to leave on the Friday Seth woke in the night screaming in pain in his right hand side. Investigations identified a kidney stone 😩. But he was immediately put on the right antibiotics and within 48 hours his blood markers were back in the normal range thankfully!!! We were given the go ahead to take him away 18 hours before we flew! Cutting it fine!!!
We had a bit of a rubbish time with our flights- long delays and lost luggage but we had a lovely time in Malta.