We are off on another adventure! We used to go on this kind of adventure often, but it has been so long since then that this feels kind of foreign now. What exactly are we doing, you ask? We are in Baltimore to see a new specialist today.

During different seasons of my life, we were tirelessly searching for more specialized care wherever we could find it – At times we were away more often than we were at home. But this is our first medical trip since 2014.

So what changed? 

Well, first of all, soon after my last trip, I ended up in the hospital with an HLH flare – the third time that happened after travel.

And these past few years my local care team has become better than I ever expected! My day-to-day needs have been met. And sometimes if you are getting by each day, you feel like you are doing alright.

Or sometimes we make a wrong turn along the way ourselves. 2014 was a crazy year for me in more ways than one. I lost the use of my “good” arm following a procedure… And then the next day I found out that my beloved hematologist, Dr. Arceci, had discovered that I have a rare mutation, which he believed could be an actionable finding. So the question was, which issue should we tackle next? Ultimately we decided to pursue treatment for my arm first; the closer to the original injury, the higher the likelihood of regaining mobility in my arm. Dr. Arceci felt this was reasonable as well. He said he would be there whenever I was ready to move forward with treatment for the riboflavin transporter gene mutation.

Well, we didn’t get very far with my arm. And by the time we got around to the mutation, a tragedy happened: Dr. Arceci was killed in a motorcycle accident. This was truly devastating to so many people, myself included.

For a while now we have been standing still when we want to be moving forward. For over a year we have diligently tried to find the right place to go in search of medical care. But just because you want to see a doctor doesn’t mean that they want to see you – Sometimes they aren’t accepting new patients, sometimes they feel they have nothing to contribute, and sometimes they simply  don’t want to deal with somebody as complicated as me.

But we have finally found a specialist who may have something to offer. Today I am seeing Dr. Hilary Vernon at Johns-Hopkins. She specializes in genetic diseases such as mitochondrial disease, which I have a clinical diagnosis of – But she has also treated at least one patient with a riboflavin transporter gene mutation.

For the first time in what feels like forever, I am hopeful that I may be moving forward. Could you please pray that this doctor will be able to help me?

Although the last few years have certainly been challenging, God has been so very faithful, blessing me with reasons to smile each day. (For instance, yesterday I saw dolphins!) I look forward to telling you all about this appointment, as well as some of my other favorite adventures I haven’t yet shared with you,  just as soon as I return home. Thank you for the love and  prayers, friends!