T+106: Boost Delayed

The week so far has been routine. Kay benefited hugely from a couple of days at home. On Tuesday, back in her room at the hospital, she was smiling, happy and very funny. In the evening she was chatting to the nurse saying that she was looking forward to going back to school and the new school year. When asked why, she replied, "Next year we get Sex Education... with pictures!". Daddy choked on his mug of tea and had to be resuscitated.

Medically there's not so much to report. The acute BK virus symptoms, namely peeing blood and pain, have died down. So it looks like the BK virus is in remission. Next week the BK virus load will be measured. The CMV virus load remains the same at 10e3 and although this is above the 'safe zone' of 10e2, no-one seems very bothered. Kay's weight is slowly increasing and she's now passed her minimum weight of 28.5kg, this morning she was 28.8kg. So that at least is one battle that we have won. She's also off the antibiotics for the line infection. This makes life a lot simpler since that's intravenous medication. She's also been taken off the anti-rejection medication. Cyclosporine is a fairly nasty drug that also suspressed bone marrow activity, so we're hoping to see an increase in Kay's blood counts, although there's the possibility that this won't happen until she's has the stem cell boost.

The disappointing news is that the boost has been delayed by two weeks until the 26th August because of some issue at the donor's end. To be honest I'm not that disappointed, I'm still awed that the donor is prepared to undergo the transplant procedure again and if they need an extra two weeks to get sorted, that's fine. We love our donor.

Since things are progressing routinely and we have a break in the antiviral treatment on Sunday's and Monday's it's likely that Kay will be able to go home again tomorrow until Tuesday morning. Without the need for intravenous antibiotics this will be a much simpler exercise than last weekend. All of the routine medication is stuff that we can deal with at home without support.  The medics are also looking in to the possibility that the antiviral medication that Kay gets three times per week could be done at the Catherina hospital in Eindhoven. This would mean that Kay could be based at home and have the treatment as a day patient.

Kay is very excited about going home again. She has big plans to ride her mountain bike round the garden. Kay's definitely got the wind in her sails again since last weekend and has started to push herself to do things. In the last days she's twice been with the physiotherapist to the gym upstairs (yes, they have a great (big) gym for the kids here). She's pushed herself a little hard and is now suffering from muscle pain. I keep assuring her that this is a healthy kind of pain, but for Kay, pain is pain.

So, the next big planned event is the bone marrow boost. We just have to hope that everything else remains stable and routine until then. And tomorrow another couple of days at home...