I'm writing with another update on Peter. First let me say thanks to everyone for all your loving and supportive emails, visits, presents for Peter .... Even though we haven't had time to respond to even a small fraction of you, we appreciate everything. Thank you.
Peter continues to be himself - still eating, still sleeping, still smiling - and his platelet counts continue to be extremely low. In spite of the low counts, he continues to be free from pain and has not had any significant complications. We consider this to be a small miracle.
Yesterday was a long day, both for Peter and for us. He had a set of labs, a blood transfusion, a platelet transfusion and a bone marrow draw. Aside from the obvious discomfort of getting jabbed with so many needles, Peter came through everything like a champ. The bone marrow showed that Peter has an excess of platelet-producing and red-blood-cell-producing cells, which suggests that his problem is immune-mediated, as the doctors suspected. Basically, the idea is that his immune system is killing off the platelets and red blood cells and the bone marrow is responding by trying to turbocharge the production process in an attempt to replenish his supplies.
The combination of low red blood cell and platelet counts means that Peter has a condition known as Evans syndrome. In the near term, the diagnosis allowed the doctors to start a course of treatment. This morning, they started Peter on a steroid (prednisone) which should suppress his immune response enough that his counts should go up. Note that this is the same thing that the IG was supposed to do earlier this week, but apparently IG is not very effective against Evans and prednisone is the next line of defense. It will take a few days for the prednisone to take effect, but it is effective in about 75% of Evans cases. Thus, our current prayer is that his counts start going up over the weekend. If this happens, we will be able to take Peter home and he'll continue the prednisone treatments for another couple of months to give his immune system time to re-set.
In the longer term, Peter's prognosis is uncertain. Evans is a very rare condition: the doctors here see only 1-2 patients a year with Evans and have never seen it in baby so young. Even if the initial course of steroids is effective, it is very possible that he will have one or more relapses that will require treatment. The doctor said that in his patients, he has seen anywhere between one and forty relapses over the course of time. We are obviously hoping Peter will be the first case he sees that will have zero relapses, but we'll be happy if Peter is at least on the low end of the distribution.
For those of you who pray, we would appreciate your prayers that God would continue to protect Peter and that his counts would go up. In the longer term, we are praying that Peter would have a good quality of life going forward (e.g. that he'll be able to go off medication and his symptoms will not return for a long, long time). For Elisa and I, you can pray that we learn to deal with the uncertainty of Peter's diagnosis. We are both planners, and so having so little certainty about what the future holds just doesn't sit well with us. <sighs> But I guess God makes the plans and not us. So we just need to be patient.
In the meantime, one or both of us will be here at Chidren's with Peter, so if you're in the neighborhood, feel free to stop by to see the miracle baby who seems to be able to survive without platelets. <smiles>
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