Still on the up and up (Day +115)

What's been happening. It has been a rather stressful few weeks. The nurses and doctors have said repeatedly that they are stumped by all the complications that Max has had to endure, given the supposed very good cord blood match he received.  A few weeks back, Tim asked our main transplant Dr the hard question, as to whether there was any possibility that Max got the wrong cord blood. To our shock she uttered that the same question had crossed her mind and although extremely unlikely, they would be running some tests. One test was to see whether the donor blood Max received was actually the cord blood it was supposed to be (!), and another test (chimerism) was to determine how much of Max's new blood cells are his old blood cells vs the donors blood cells.

As you can imagine horrid thoughts crossed our minds many times and we were extremely anxious to find out the results. It would not have been uncommon to have a mixed or partial chimerism result where some of Max's old blood cells are present in addition to the new donor cells. This would not have been the best result (unless he wanted to make a living in crime or just confuse the hell out of CSI investigators), but people can live with two sets of DNA. Last week however, we learned that Max's blood cells are 100% donor! This is wonderful news! Although we are all still baffled as to the reason he has had such severe GVHD.

Speaking of which, Max's skin is looking great (thank goodness), his poos are now considered semi formed - which is very good (I do have photos, but I won't post for obvious reasons!), and he is still smiling and joking often. The sessions with the music and physiotherapists are now even more enjoyable.

Max remains on a huge number of drugs orally: blood pressure (x3), anti fungal/bacterial/viral (x5) and a few others. He is also currently on steriods, cyclosporin and MMF (all immune suppressants) through his IV pole. The reason they are given intravenously is because, due to his loose bowel motions, there was a high risk that the drugs were not getting adequately absorbed into his body. But because Max no longer has diarrhea, we are now starting to change these IV drugs to oral. Yesterday we started with the steroids. We'll see how this goes for a week or so, then start with the other ones. Once Max is no longer needing drugs and fluid replacement intravenously - theoretically, there is nothing keeping us in here!

Max is unbelievable with taking all his drugs, the nurses are continually amazed by this, stating they have never witnessed a child take their medicine so willingly and happily. Max knows pretty much all the drugs he is on, he even caught out one nurse when she forgot to bring one of them. "Where's my Aciclovir?" he questioned. She was completely blown away!