When a medical trip feels like a vacation to a child with rare disease

My daughter Caroline has been part of a research study at Duke University since she was just a few months old. Every fall, our family packs up and flies down together. We stay in a hotel, squeeze in as many appointments as we can, and then head home.

With fall approaching, we let her know our trip is just a couple weeks away. You would think I had told her we were headed to Disney World.

She talks about our trip the way other kids talk about vacations. She wants to know exactly when we’re leaving, and she counts down the days with such anticipation. She talks about what we might see and do this time, and between appointments, we do wander around campus together. Caroline loves stopping by the bookstore, exploring Duke Gardens, and snapping photos at the clock tower. I have to admit, I look forward to these moments, too.

Caroline also lights up at the mention of the airplane, and she is thrilled about missing two days of school. But what really makes her happy is that, for once, it will be just Mom, Dad, and her. No siblings. Just the three of us together.

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The reason for the ‘vacation’

But then reality sets in, and I remember why we are really going. We are there to see doctors. Lots of them. There are back-to-back appointments with the team who cares for her Pompe disease. There will be tests, evaluations, endless questions, and waiting rooms. Some days start before the sun comes up, and some appointments seem to stretch on forever. This is not a vacation, even if it sometimes feels like one for Caroline.

And Caroline actually likes being there. She likes her doctors. She recognizes their faces and remembers their names. She knows the people who ask her to walk down the hallway, stand on one foot, squeeze their hand, or answer questions about how she is feeling. These are the people who know things about her that most others do not. They know her numbers. They know her story. They know the things we have worried about and the things we are still watching.

But when Caroline walks through those doors, she doesn’t seem to carry any of that with her. She just sees people she knows. She sees Duke. She sees Mom and Dad. And she sees an adventure waiting for her. She walks into her appointments with a kind of confidence, almost like she is a local celebrity.

I think adults sometimes forget how quickly children can make a home out of places we wish they never had to know. For us, Duke is a reminder of why we are there. For Caroline, it has become a place she knows well — a place with familiar faces, beautiful old buildings, and long walks across campus.

It is also a place where she gets Mom and Dad all to herself, and there is something bittersweet about that for me. I wish her excitement came from a different kind of trip. I wish that missing two days of school meant we were packing bathing suits instead of double-checking our appointment list. I wish the countdown to Duke was a countdown to the beach. But it’s not, and that’s OK.

Caroline has taught me that a trip doesn’t have to look like a vacation to feel special. Most parents would never call a week of medical appointments something to look forward to. But Caroline knows she will still get fun airport snacks, two days away from school, and a chance to stay up late watching cartoons in bed at the hotel. She gets Mom and Dad all to herself. And she is going back to a place where people know her. For Caroline, there is so much to be happy about.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.