We have great news to report: after a series of procedures and tests over the last three weeks, Luke was cleared to resume physical activity today by his doctor! We are all really thrilled, and Luke is, of course, the most thrilled of all. We’re very thankful to God for how He has brought Luke through the last six months of being very restricted on activity. These months were stressful and tiring, his activity restriction constantly grating against his nature as an active five-year-old. He handled these restrictions remarkably well and probably gained a lot of maturity beyond his few years in the process. They were probably the most difficult for him during recess at school. Now, he should be able to run off with his friends instead of seeing them run off from him. He can now be as active as he wants, though he cannot participate in any “contact” sports or activities that could result in significant impacts. Luke will not be climbing trees, riding horses, or doing karate. But he can play soccer, baseball, and run with his brother and his friends.
Our joy and excitement with this news is only tempered by our ever-growing understanding of this disease and his condition. We’ve learned more clearly just how little this disease is truly understood and that it hasn’t stopped or been “cured.” Luke still has four aneurysms in his coronary arteries. There is some evidence they have gotten smaller, but the doctors do not believe they will ever fully go away. As long as they are there, he will have to take blood thinning drugs and be restricted from “contact” activities.
The main issue for Luke going forward is that this disease has the potential to cause his arteries to artificially narrow, which would restrict blood flow to his heart. No one knows how or why, exactly, this occurs. No idea. It just happens with some probability in kids with this disease. It’s not even easy to put a numerical probability on it, but the probability will go up slightly each year. The doctors use the words “years” or “decades,” but they admit they don’t really know. The fix at that point would be heart surgery (stint implantation or bypass surgery, with present technology). So Luke will have to be tested every 6 months to a year, really for the rest of his life, and maintain constant vigilance for these problems.
We are very thankful today, though, for his clearance to run again, to swim, to play sports…to be a kid again. We have to trust God to continue to protect and heal him, and most importantly, to grow him through these trials into the man He wants him to be. I’m sad to realize that he isn’t cured…and probably will never be “all better.” But I’m happy to have him and to have the privilege to be his dad; he is a tremendous boy and continues to impress us with his sensitivity, maturity, and spirit. He will be evaluated again in 3 months, then in another 3 months, then in 6 months… Again, we may not have reason to update this site for some time. Thank you for your ongoing concern, questions, prayers, and support. We continue to covet them.
