Countdown T-9

Yesterday’s chemo finished at 4:30 am this morning which meant that the night was broken up by alarms going off on the infusion pumps, nurses running in and out and Kay wanting to go to the toilet every 2 hours or so. Both of us were in a fairly zombie like state this morning. Marion had spent the night in the McD house so was relatively fresh when she arrived.



Today Kay was given the same chemo again today, chemo designed to kill off her bone marrow. Again the chemo was pushed at a lower rate for a longer period and should finish around 9.30 this evening. Hopefully Marion & Kay will sleep better tonight – my turn in the McD house. Kay looks somewhat rougher than yesterday. She’s also getting dexa to prevent sickness and this has already rounded out her face and given her an extremely bad temper. She has been looking quiet flushed in the face as well, which we think is also a dexa effect. Apart from that she has had a quiet and uneventful day, fortunately.


In theory tomorrow would see her moved to the High Care unit where she will be given AGT, a drug that kills off all her T-cell lymphocytes and effectively destroys a large part of her immune system. This treatment usually causes an allergic reaction in some patients of differing strength, up to and including full blown anaphylactic shock. This is why it is necessary for her to stay in High Care for the first 24-48 hours, and bearing in mind Kay’s history with allergic reactions I assume that it will be no easy ride.


However the debate continues as to whether or not the rash on her chest is Shingles or not. The dermatologist thinks not, but is not sure what it is; the immunologist thinks it could be Shingles; the results of the smears are inconclusive. So it has been decided to postpone the AGT treatment for 24 hours, giving time for a skin biopsy to be made of some tissue from Kay’s chest. So first thing tomorrow morning this procedure will be performed. I’m sure that Kay will kick up a huge, dexa fuelled fuss about the whole thing, but yeh, it has to be done. Getting an attack of Shingles when she has no immune system is considered be too risky. So after this tomorrow becomes a rest day, one of two planned during the countdown.


One interesting thing that Marion learned yesterday is that the donor actually travels to Nijmegen for the stem cell removal procedure, which is performed on the same day that Kay gets the transplant. The donor undergoes the procedure in the early morning, the lab processes the tissue during the day and Kay gets the transplant infusion in the early evening. The logistics of this are fairly mind boggling, especially considering that the donor almost certainly has to travel long distance. I started to raise a bunch of what-if questions with the doctor about this, this afternoon, but Marion flew into a panic on the subject so I didn’t get any useful answers. Fair enough, I have the same attitude about the details of the various treatments.


Anyway, 2 days down, 8 to go.