Just a quick update to say Keegan is still hanging on at home and still TPN-free for the moment. His labs this week continued to show a steady decline. However, the medical team is in agreement with us that there is nothing to do now but wait. Even though we know what is coming, we don't know exactly when the other shoe will drop. That is maddening, surely, but wasting energy worrying about it does no one any good. Instead, we are trying to immerse ourselves in his therapies and appointments and fill our one free morning each week with something fun.
By the end of next week, we may very well be in range of a blood transfusion and back on TPN. Any other child (or adult for that matter) would have been transfused a long time ago, but our thresholds for transplant patients are lower, as each blood transfusion introduces new antibodies that could make later organ or tissue matches more difficult.
Today marks two weeks outpatient and four weeks since his last fever. That makes us extremely anxious that the next one is around the corner. We just have to wait for Keegan's body to show us what's next. He has another rheumatology appointment on the 8th, where we are hoping to get more information from his last genetic work-up. If he flares before then, we will just continue to pray that we can treat his flares as successfully as we have before.
We are hoping for another "normal" week for Keegan and a quiet start to our summer. Thank you as always for continuing to keep Keegan in prayer. Every week we are blessed with a "quiet" week is a blessing, and we are so very grateful.