07/12 - The New Normal

Today Peter had another appointment today to check his counts and see how he has been tolerating the new medicine (6MP). Much to our surprise, his platelet counts were up again (to 112,000)! I mean, we weren't floored like last time, but since he's been off prednisone (the old medication) for a week and the 6MP takes a month to kick in, there wasn't much reason to expect the counts to go up.  We were mainly hoping they wouldn't go down too much.  God is good.

In terms of treatment, his strong counts mean that he has to get blood draws less frequently - our next appointment is not for two weeks. This is good news for Mama and Papa because it means fewer 6:45 AM trips to the hospital, and it is good news for Peter as it gives his little veins some time to heal.  In the longer term, the relatively high and stable platelet counts may mean that Peter is in remission - that is, it might mean that his body has learned to self-regulate. If his counts remain high for the next month, there has been some discussion of taking him off the 6MP entirely in the hopes that he can remain stable without medication. We are cautiously hopeful that this will happen.

In other news, Peter got to go to his first wedding over the weekend (Congratulations Alex&Diana!).  Two weeks ago, we wouldn't have thought we would be able to do this with Peter.  Taking a trip to NYC, being away from the hospital for two days, meeting lots of new people (and new germs) ... it seemed too much to hope for.  But everything went smoothly, and everyone was excited to see the miracle baby. While Elisa and I were still hyper-aware of everything that seemed remotely wrong with Peter (Is that a rash?  Does he seem congested?), we're hoping that the trip represents the new normal for Peter.