Update #5: You Rock.

#ItsJoTime

Through the past two plus weeks, Ryan and I have had a lot of time to sit and think. There are hours spent not sleeping in a dark hospital room, listening to the beep, beep, beep of monitors. There are fidgety waiting rooms while your child is under anesthesia when you feel like you’re holding your breath under water. There are quiet car rides through sunlit streets to feed your dog or drop off your toddler at daycare, tasks that used to include a noisy, singing preschooler, that suddenly do not. During these think times, we have come to a very intimate and stark realization: this brain cancer journey is not about Josephine. Jo’s life is too young. She will either not remember this or not survive it. This journey is about us. Yes, this journey has Jo at the epicenter, but the ripples keep bobbing out and out and out, reaching more and more people and getting larger and larger. This will change our lives, and countless other lives (maybe even yours), forever, regardless of who wins and who loses. Yesterday and today are tough ones for Team Wrenn.

Yesterday, my little sister Meredith Alvarez (and her infant daughter, Madison), who flew here on one hour of sleep after getting the call about Josephine’s MRI, got on a flight headed home. Today, my own mother and father, who packed up their camping trip and drove hours across state lines to be with us, got in the car and headed back across the Mississippi river. And, walking away down a cold, white hospital hallway, we had to say goodbye to our pediatric second-year resident, Taryn Scibienski.

You all know by now that Vanderbilt is a teaching hospital and medical students, residents, and fellows are key parts of every care team. Some of their rotations are two weeks, or four, or one month. Today was Taryn’s last day on our service. A rotation that began on June 6, the day Josephine was diagnosed. Taryn was in the ER room shadowing Dr. Esbenshade when he told me what exactly we were dealing with. She has rounded on Josephine every day since. She was one of the first faces we saw every morning, stopped by multiple times during the day, and one of the last faces every evening. She held my hand as I cried on the couch outside Josephine’s room, calmed me down when I wanted to punch someone with an uninformed opinion, and made Josephine play-doh glasses to match her own. She carried my questions to the attendings, ordered medicine to make our girl feel better, and listened to her heart, her lungs, her belly, so intently, to ensure all of her was working as well as it could be. I have no doubt in my mind that Taryn, who is already a good doctor, will make a phenomenal pediatrician. I am hopeful that Josephine’s story is one that will help in that journey. And regardless of Jo’s prognosis, it is lives like Taryn’s that will carry on Josephine’s legacy. People who will alter the course of history. Taryn is poised to save thousands of lives in her career. A career that began, in part, with me sitting next to my preschooler eating Cheetos while someone calmly explained that without intervention, she wouldn’t make it to her fourth birthday.

Taryn was next to me during the darkest days of my life and it felt so natural that she was there, as if I’ve known her for years. Continuing this journey without seeing her daily is something I am having trouble wrapping my head around. I have faith that the comfort she provided me, she will provide, in the coming years, to hundreds of other parents. I hope one day she can look in the eyes of a crying, confused mom whose child was just diagnosed with a seemingly unbeatable disease and tell her that she’s been beside parents like her before, and they came out the other side and lived to tell about it.

Josepine has had a great couple of days. She’s eating lunches after radiation treatments, tolerating the chemo well, and today, tricked me into going downstairs for “bingo” and suddenly, we ended up at Ben & Jerry’s and just HAD to get a double waffle cone with sprinkles. And then when the sprinkles ran out, asked for (and received!) more sprinkles. Jo laughed at the nurses in radiation this morning, handed out barn-yard stickers to everyone, and got a chest x-ray (with much screaming protest), that was completely clear and beautiful. I would do almost anything to see those fleeting moments of sheepish smile, to see her zooming (much too quickly) down the hallway in a wheelchair pushed by her father, to hear her calm breathing during a nap. I hope I can continue to do so.

And to Taryn, (and countless others in training, like medical student Samuel Trump who expertly led rounds for Jo’s first week and a half on the floor) I can not say “thank you” enough. Despite her diva-attitude of “no pictures” today, I hope that Josephine’s legacy will live on in people like you. I hope the last few weeks getting to know her will be bobbing up in down in your memory and stretching out further and further, as more and more people are healed by your hands. And most of all, I really hope to see you at Josephine’s graduation, or wedding, or, well, whatever may come our way.

We wish you the best.

You rock.

#ItsJoTime

-CHW