11/29

It's been a long time between posts but there is some news to report after today's doctor visit.  All of John's blood counts have improved - 7.6 wbc, 12.1 hemoglobin and 118,000 platelets.  These counts are all below normal but they are all better than they were a week ago.  Petichiae have appeared on John's lower legs but his doctors do not seemed overly concerned about this development.

John is a little dehydrated and has lost about 60 pounds - he is down to my high school weight now...  The doctors offered appetite stimulants but not enthusiastically because of their side effects.  For now John will do his best to get more fluids and calories on his own and we'll see next week whether that approach is working.

John is still really tired; his doctors recommend doing what he can but say recovery is very individual and somewhat dependent on what treatment preceeded the bone marrow transplant. John was receiving chemotherapy until a month before his transplant and has had 26 meds during this procedure so his recovery is going to require significant time.

The potassium and creatinine levels are elevated again; kidney function is also out of whack (please excuse the technical term).  Dehydration and/or tacrolimus could be affecting these levels.  John didn't have to take the tacro tonight until the test results come back; but, he had to restart the vile vials of medicine to bind to and lower the potassium.  Ugh.

The newly engrafted stem cells are doing their thing (hence, the blood cell count improvements).  Donor #1 seems to be dominant - no one knows who donor #1 is but this could never have happened without the help of all three of our amazing sons and their families.  John's doctors describe his developing immune system as that of an infant; it should take about a year for it to become functional.  In the meantime, he is supported with anti-bacterial, anti-viral and anti-fungal medications.  Once the doctors determine he is ready, he will receive all of the childhood vaccinations again.  On average, that's a year out from transplant so we'll be keeping him as microbe free as possible until then.

Progress is painfully slow but there is progress.  We are hoping to report in another month that appetite and exercise are improving.  Thanks for your interest; we will update you after next week's dr. appointment.