Good News

One year ago, we road-tripped down to see Dr. Bruce Korf in Birmingham, AL. He is an international expert on neurofibromatosis (NF) who recently helped open a clinic in Shanghai. If you have no idea why I'm talking about this, you might want to start back at the beginning with Hard News. Otherwise, carry on...

During that visit, we first met with Dr. Korf's right-hand person, and she gave us one set of answers to our questions. Then we saw the big guy himself, and he gave us mostly different--and much better--answers. It was almost shocking the difference in knowledge between Dr. Korf and everyone else we've seen. There really is no substitute for the expert, for the doc who's seen thousands of patients with the same rare (and highly variable) disease.

Why am I just now telling you about that trip?

We've had lots of ups and downs on this road, and it has generally taken months to detect patterns or confirm changes in Aaron's symptoms, so I've grown hesitant to declare a new status quo. Just last month, we had a disappointing blip. But overall the improvement has been dramatic enough that I feel like it's worth sharing, even if things change again.

We had been seeing a GI doc for about a year (bc vomiting), so I'll never forget when Dr. Korf said, "I've never seen a GI drug solve an NF problem." Instead, he prescribed the beta-blocker (propranolol) that has worked the best for his similar patients. A beta-blocker -- a largely benign medicine without all the side effects of the various meds we'd been trying over the past 2 years.

At first, it helped some. Then we upped the dose, and since then, Aaron's vomiting/headache episodes have gone from once every week or two to once every MONTH or two (except for March).

It has been life-changing. We still try to build flexibility into any plans we make with him, but the probability of problems is so much lower, praise God. He's been able to attend an event almost every Tuesday night. Absenteeism is no longer a big problem at school. He's doing so much better at keeping up in class. And, of course, he's just not in as much physical pain. It's all good news.

Which means I'm hopeful going into his annual MRI this summer. Please pray with us that the results are stable or even improve. And thank you for supporting and encouraging all of us along this path.

Someday maybe I'll write about parenting a child with chronic illness. In the meantime, just know that we are incredibly grateful to have Aaron in our family, just the way he is, and continue trusting God's care for him and us.

God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.Glory to God in the church!Glory to God in the Messiah, in Jesus!Glory down all the generations!Glory through all millennia! (Ephesians 3:20-21) 

And if you're interested in celebrating Aaron's progress with us while also working toward treatments and a cure, please join us May 6th at the Franklin Theatre for a benefit concert to #end NF.