Over the past few weeks, Owen’s CMV level continued to be a concern to us. It jumped up and almost caused him to be admitted to the hospital for IV treatments. Thankfully, as we took him off his steroids and put him back on Valcyte, the cell count dropped significantly. This week, we were so relieved to hear his count was 0 AND he could skip his weekly hospital visit!!! When I told him we weren’t going to CHOP, he immediately translated the news by asking “So, no needles this week”? It was a sweet, but sad moment. We are all struggling with how long we’ve been on this journey and with the unknown amount of time that still lies ahead of us. Owen’s GVHD of the skin has been fluctuating. However, he’s had more good days than bad, even off the steroids. We are extremely thankful for that!
As it’s cold/flu season, we’ve been limiting contact with most people/places. But, we were able to enjoy a little bit of time at a small carnival. Of course, I looked completely insane to other parents as I scrubbed every ride down with Clorox wipes before Owen went on! Regardless, we all had a great time!