Update #19: Good news, dancing queens, and other stories

#ItsJoTime

It’s good news, team! While we haven’t officially met with our oncologist and neurosurgeon yet (that will happen next Wednesday), we received word that Josephine’s MRI showed “continued decrease in size and enhancement” of her tumor and “improved mass effect” – which, translated, means an ever-smaller brain tumor and less swelling/pressure on the important parts of her brainstem. Wow.

It takes time for this type of news to sink in. It’s not like the immediate thrill and euphoria of a football score to take the lead just before the time expires. It’s more of a warm disbelief. A waiting for the other shoe to drop. A question about how we could possibly be so lucky. The odds just keep breaking our way, and we’re wondering how long that will last with such a fragile part of her brain and such an unknown disease.

I’m writing part of this update while sitting in the waiting room of the Nashville Ballet school, surrounded by parents on devices and little girls with buns and tights. Josephine just walked back into the studio in a row of girls with blue leotards. I don’t know which one of us was more anxious about this whole dance thing, me or her.

Josephine’s amazing physical and occupational therapists said dance would be the perfect thing to continue her core strength training and balance improvement after she graduated from therapy. Josephine’s Grandmom graciously purchased a semester of classes (and the cute leotard, shoes, and bag) for Jo’s Christmas gift. We came to the open house a few weeks ago to meet her teacher – the first thing Josephine said when she saw the bars of the studio and the colored dots set up for jumping (leaping?!) was “this is just like therapy!” as if it was the most natural thing in the world.

She’s excited, but she’s also a bit apprehensive. She doesn’t know any of the other girls yet. She doesn’t know what the teacher will ask her to do. She doesn’t know if she’ll be able to physically do it. Neither do I. But I’m anxious about a whole other set of things that she doesn’t even seem to realize. Like, how you can see the shape of her access port on her chest through the thin blue fabric of her leotard. Or how the required ballet-bun-hairstyle means her short hair growing back from falling out because of radiation and shaved for a craniotomy, and the craniotomy scar itself, are clearly visible. I’m also anxious about what other parents and other kids will think of us and how they will interact with Jo. Because she looks so good lately, it is not immediately apparent that she was ever sick. And telling someone “she still has a brain tumor” is just not something one does nonchalantly. Alas, how lucky I am to worry about such things, rather than the alternative.

The power of this moment is not lost on me. The appreciation I have for even being able to sit on this chair right now is nearly overwhelming. Less than six months ago, Josephine could barely walk. When she did, her balance was poor, and she would careen into walls and furniture. She could not jump. She could not dance. She could not walk up and down stairs by herself. She did not have the strength or balance to pull her clothes on or off. She spent most of her time curled up in a hospital bed or on a couch, hunched on her side watching videos, attached to machines with wires and tubes. The fact she ran into this building, got dressed herself, and followed the line of girls gracefully and straight down the hall to the studio is in itself a bit of a miracle. Thank you again for all of your prayers and well wishes, we are certainly benefiting.

The week before last, Josephine was tested for early entrance into kindergarten. She misses the cut-off date here in Tennessee by just a few days and her current Pre-K teachers assured me she was ready. She aced the test and is so excited about starting school in the fall! What did she miss on the readiness assessment? Well, she couldn’t stand on one foot for 10 seconds. Sigh. I know why. Maybe dance will help.

Ready for the next big thing? We are. #ItsJoTime