Bursts - 1

Throughout this journey, really any medical journey, there is a great deal of waiting followed by bursts of information. This week the bursts exploded one after another like a firework finale!

To begin, we went to see gi to follow up after Cole's hospital stay.  I was thrilled to see he had actually gained over a pound since we'd been  at Children's.  Of course it helps that the steroids seem to make him eat like a horse.  As always, our doctors there were outstanding, not to mention wonderful regarding my apprehension and  questions about our next steps.  When Cole has finished this course of prednisone, they have recommended he begin the drug 6mp.  While the side effects can be harsh,   his physicians believe the benefits outweigh the risks.  I asked them honestly about our alternatives if we chose against this treatment, and basically we could be looking at Remicade infusions or removal of his affected tissue, the latter being what we want to avoid.  Before we could  move ahead with this new treatment, we needed to hear from our immunologist to weigh her thoughts about this drug in terms of Cole's nk cell dysfunction.  In the meantime, both the fellow and resident gi physicians felt a lump during their abdominal exams on Cole.  To get a clearer picture, they have ordered  a CT scan, which we have scheduled at the hospital early next week.

As Cole napped after our appointment, I sat reading the information gi recommended about 6mp.  The frequent labs to monitor both liver issues and bone marrow suppression Cole's doctors discussed in the office echoed in my head as I read more.  If they needed to check levels so often, while helpful, this drug could have very negative consequences.  Still, the other alternatives didn't offer much sunshine in our impending decision either.  How can you choose to give your child a treatment where one of the first warnings you read is about the increased risk of developing a fatal cancer from using it?  As Nick and I talked about what we were going to do the phone rang.  It was immunology, with news that affirmed every step I've doubted over the past month.  Talk about surreal, it seems we've entered the pages of a science fiction novel!

For now, the young prince calls, thus the saga must pause for the time being.