Wednesday, February 10, 2010

Monday, February 1, 2010

Day +130 (First month home ...)

I almost couldn't believe it when I realized today is February 1st. We returned to Los Angeles exactly one month ago. Hunter has reentered his home life relatively smoothly and continues to do well. However, it appears the end of his steroid taper brought about some 'mild' GVHD of his skin. It mainly affects his face, which is quite 'scaly', for lack of a better adjective. The BMT nurse at our clinic appointment today asked if Hunter bruised his face, which he hadn't, so it's safe to say his 'rash' is noticeable. No amount of Eucerin lotion or Aquaphor ointment makes the slightest difference. Believe me when I say I should own stock in both companies after using them so generously, especially with Grandma Marcia's help. Hunter does not seem itchy, although he woke up the last two mornings with scratch marks on his face. As parents we try to remain calm and not automatically think worst case scenario but that can be hard to do. Unfortunately, simply for the sake of comparing and contrasting, we had a new doctor at today's appointment. Thankfully, Hunter was prescribed a Tacrolimus ointment (good call Leann) and a Hydrocortisone cream, both to be used three times a day. In all honesty, we make it difficult on ourselves by checking every move our current Los Angeles BMT team makes with our former Seattle team. In this case Seattle suggests we use the Hydrocortisone cream as sparingly as possible and for no more than a week. Our next appointment is scheduled for two weeks from today unless Hunter's skin condition worsens or spreads. The conversation about Hunter's Tacrolimus taper has been taken off the table until his skin GVHD stabilizes, which we completely understand. We're pleased they didn't want to put Hunter back on steroids immediately. We know it's a possibility but Hunter is so much happier and less emotionally unstable without them. So are we!