12/23

There is a change in the plans for this upcoming week.  John is still getting the apheresis catheter inserted tomorrow (Monday) but due to Christmas and short staffing, he will not begin photopheresis until Wednesday.  The plan is to receive it M and W this week, then MWF next week and then adjust the number of treatments per week as required by the results.  The point of this treatment is to alter the DNA of the T cells produced by the new immune system so it will no longer attack the proteins on John's skin which it recognizes as foreign resulting in gvhd.  Since he will be getting photopheresis several times a week, the new T cells produced by the immune system should also be disabled as long as the photopheresis continues.  In time, the T cells should "accomodate" John's proteins and stop attacking them but that will take a while.  Photopheresis generally lasts at least 3 weeks; we're not sure if that means we have to be in the hospital that whole time or if he will eventually be able to receive this treatment as an out patient.

Once the gvhd is successfully treated, the steroid dose can be tapered off more quickly letting the new immune system work against the CMV.  In addition, John is receiving 3 medications which are also part of the CMV treatment.

Tomorrow, John will be getting a skin biopsy to make sure the rash is gvhd.  John's doctor thinks that is the most likely cause of the rash but viruses in the CMV family could also be the culprit.  Treatment will depend on the biopsy results.

On other fronts, John continues to do super well in PT - walking, weight lifting, stairs, etc.  He is hooked up to so many IV meds right now, he has his own personal Christmas tree.  The physical therapist told John he never saw an IV stand with so many bags hanging on it; currently there are 5 and even more tubes with different colored clamps everywhere.  A strand of lights would complete the decorative effect :)

Blood counts are all seriously down probably as a result of all the meds.  He has had a growth stimulating factor to increse the white count and that has improved from neutropenic to 5.6.  A transfusion of red cells has improved those numbers from 7 to 9.9.  And, he is getting bag after bag of platelets; that count has improved from 12,000 to 28,000 but it has to get up to about 50,000 for tomorrow's surgical procedure.

A final bit of good news is that he has broken the 170 pound mark this week.