Update: Mixed News

The start of the countdown is rapidly approaching, Monday should be T-10 days. Tension in the Howe household is slowly rising. Kay is doing well, but is keeping her head down and staying busy. She has recovered from the line operation but the new line is a distinct encumbrance. Last Friday she had to have the dressing changed, which from her reaction appeared to be as scary and painful as the CIA's reputed waterboarding technique. But was soon forgotten.

We had some good news on Friday. During the operation to place the new line, a bone marrow biopsy was taken for another MRD. On Friday evening our specialist phoned with the result: the MRD measure had further decreased, meaning that remission continues and provides a good basis for the transplant.

We have spent the Easter weekend enjoying some family moments. Yesterday Marion, Kay, Nattie and I cycled to Weert and back, some 20 km total. Kay did very well considering. I had to push her along for around 6 km on the way back but she cycled the rest herself.

Today we had what should have been a routine check at Nijmegen. Kay has a cold and a cough at the moment, but according the specialist, this is no problem for the BMT. Otherwise Kay seemed fine, her blood levels were excellent. However, when the specialist checked Kay over, he found a fresh rash on her chest which had apparently appeared overnight. He thinks that it's Shingles, a rash related to the chicken pox virus. This is serious enough to potentially delay the BMT if it's not sorted out in the next couple of days.

To be certain slides and cultures of the rash have been taken and we'll have the results on Friday. In the meantime Kay has been started on a high dose of antiviral medicine - more or less the same stuff that is used to treat herpes C (cold sores).

The dressing on the new line had to be changed again, much to Kay's anger and disgust. Again she kicked up a HUGE fuss and had me feeling quite panicky. I took quite a while to ger her calmed down again. Then the nurse discovered a small hole in the new line where it runs into a connector. It looked like the line had been damaged by the connector, like the power cable on an iron where it runs into the iron itself.

The nurse had to find the consulting surgeon, which took a while. He looked at the damaged line and then had to track down a repair kit, which again took a while. Once delivered, we again had to wait for the surgeon, who then set about cutting out the damaged section and gluing in a replacement. In theory the glue needed to set for four hours before the line could be used. Since it's imperative that the line is filled with heparine I was worried that we'd have to sit around and wait - by now it's almost 4pm. But the surgeon decided that it was OK to flush and fill the line even while the glue was drying.

Having had poor experiences with prematurely putting glued joints into use I was rather concerned about what would happen if the joint separated (eg while I was driving home). In principle this would lead to a bleed directly from an artery, which I'm sure would be quite distracting if I was driving at the time. So I insisted that they put a clamp on the blood side of the joint so that it if did separate no blood could leak out.

During all of this we heard that Kay's first chemo will not start until 2pm on Monday, eliminating the need to be in hospital on Friday already. So, Monday it is.

Finally we had to brave the endless queue in the Pharmacy, before finding out that the antiviral medicine that had been prescribed was not in stock and would need to be delivered to us at home later, by courier.

Then, at last we could leave - a long and hard day that we did not expect.

Cross fingers that the antiviral medicine will rid her of the Shingles by the weekend.