Day +92

We have had a good week so far. Tuesday I went in for my second dose of Cidofovir; it was a long day because of premeds and IV fluids but I was able to get a full dose (1st time I only got half) because my creatinine was only 1.4.  I got to clinic at 9am and left on the 7pm shuttle so, as I say it was a long day but Wednesday they checked my creatinine again and it was still 1.4. So all the IV fluids plus what I drank protected my kidneys just fine and hopefully when they next check my adenovirus levels they will be lower or even back to normal.

We also had a meeting with Dr Koehne and he agreed that we could travel home as soon as we can get a flight (I can't fly commercial as I am still open to infections). We have called Corporate Angels, a company that donates flights to cancer patients when they're available.

Dr Koehne felt comfortable in having Dr McGuirk look after me - and we are very happy to have him look after me and to be back in KC.  I also had my bone marrow biopsy which was fine, so hopefully those results are good. Two days ago I had my Kappa Light Chain numbers checked (these are cancer markers) and they are undetectable which is great.  So all going well we should be able to leave for KC sometime over the next week - here's hoping!

Okay, I have two updates.  First I got the latest Adenovirus numbers and just before I had the full dose on Tuesday, the number had dropped from 27,600 to 1,800 which is great and so after Tuesdays dose I should be normal. The other update is that my next Adenoviral test will be done in KC! I got a call from Corporate Angel flights today and they have a flight for tomorrow! So we find ourselves madly packing and saying goodbye to the good friends we have made in Hope Lodge. We fly at 2.40pm tomorrow direct to Olathe (20 minutes from our home), please cross your fingers it all goes to plan.