Sunday, March 16, 2014

Days +203 to +206: Plan C

Plan C has now begun. After more research and calls, Ezra's doctors have decided to try putting Ezra on an immunosuppressant instead of the drug they were originally going to try. Ezra was on this immunosuppressant after his first transplant and it is considered to be more mild in terms of side effects. The idea is that it will quiet down the faulty antibodies from attacking his blood and platelets. If it works, then the plan is to start tapering the steroids. The downside to the immunosuppressant is that it suppresses T cell function and overall immune function and he will be more immune compromised. The steroids, however, are more toxic than the immunosuppressant, so the goal is to get him off the steroids as soon as possible, if possible. 

While the steroids have stabilized his counts, there still has been no overall improvement. The immunosuppressant may take 2 weeks to have full effect, if it's going to work. So it's more wait and see. If his counts drop again, then it may be onto Plan D. 

Ezra has been doing better now that he is off the mega dose steroids. For the last couple of days, his leg pain has been happening only during the nights, which makes for sleepless nights and tired days, but it's better than pain all day long. We've been trying our best to keep him busy while in isolation with the help of all his hospital friends, and the thoughtful presents that have started arriving from special friends, family and strangers. Today's entertainment was the window washers repelling down the building across the alley. We are so grateful for your support and the well wishes and prayers - we continue to need them.