Update #7: Home, James! (Now, we wait.)

#ItsJoTime

This is James. We spent every morning walking with James. He would arrive at the door of Josephine’s hospital room at 8:15 a.m. and patiently wait as we got a cranky, half-asleep toddler out of her bed and into her father’s lap on a wheel chair bound for the radiation lab on the other side of the Vanderbilt medical complex. We would walk down our hall of 6A, out of the myelosuppression unit, down the quacking duck elevator used for pediatric patient transports, through the neonatal intensive care unit, across a long, bending sky bridge into the adult hospital, down another set of elevators, and into the basement where they keep the, you know, big machines used for shooting radiation into my child’s brain.

James would drive us the whole way, stopping at every door to open it with his badge. James would also drive us back sometimes, shaking his head quietly and walking away without the wheelchair he had brought to us if Josephine refused to leave her father’s lap and demanded pizza. Or icecream. Or a warm blanket. Or just more snuggles. James was steadfast. It didn’t matter if Jo was screaming because we left her Sophie, or her iPad, or something else in the room. It didn’t matter if she wanted to take the small wheelchair that day, or the wagon, or be carried in someone’s arms. James still walked us calmly and deliberately to our appointment, never once flinching at her hollers or her screams. It was only six or eight minutes here and six or eight minutes there, but I learned James loved the hot dog stand by my house. Learned he didn’t discriminate with good music and loved seeing shows at the venue down the street. Learned his calm nature I could count on as a model for me when I just didn’t know how to act. When I apologized for an outburst, he would smile and say “no bother, if it wasn’t her, it would be someone else.” And he was right. On Friday, I got to say the words I had been thinking about for weeks, “HOME, JAMES!”

James was just one part of our squad. Our tribe. Our village. Others included Hannah, Leslie (Les), and Tresa, the best rad-onc nurse team ever. Anesthesiologists that tell jokes about Disney movie characters as they push propofol into Jo’s IV so she falls asleep chuckling. Nurses that would eat whatever cookies Josephine shoved at them, regardless of how recently she had washed her hands. Care partners that would bathe Josephine on the floor if she refused to get in the bathtub. Doctors that would allow her to shoot them with saline syringes while conducting a neurological exam. Fellows that come examine her (or answer their cell phones) late at night or on the weekends. Katelyn, the world’s most patient, thoughtful, ingenious speech pathologist. Literally, this gal used a needle to inject barium into a Cheeto for God’s sake (right before she dipped bacon in barium) to get Josephine a successful swallow study in order for us to come home. Physical therapists like Allie and Kat who would gut it out when Josephine wasn’t cooperating. Child psychologists who were ok being MY psychologists. Nutritionists who would walk patiently behind Josephine’s wheelchair for three laps around 6A to talk about her feeding patterns and needs. And hundreds of friends, teachers, and classmates who sent videos, jokes, cards, pennies, pennies, more pennies, books, stickers, and more stickers to help Josephine through.

While I am so glad to finally sleep in my own bed and eat dinner with all four members of my family in one room, it was difficult to leave the hospital. It was difficult to turn off the beeping monitors that let me know that my daughter had enough oxygen to keep her brain working. It was difficult to leave a place where I knew if I needed someone else to step in the room so I could take a second to breathe through it, they were there. Now it’s just Ryan and I (and the spiders), listening intently to her loud, snoring breath on the baby monitor. Watching intently as she takes every bite to make sure she doesn’t aspirate it. We are responsible for starting the feeding tube. We are responsible for giving her all of her medications. And instead of James, we’re responsible for taking her down the elevators to her radiation appointments.

The plan is to be home. The plan is to slowly ween her off the steroids as her body acclimates to the treatments. The plan is for us (not James) to drive her to radiation treatments every morning, Monday-Friday. The plan is to wait until several weeks after radiation and chemo are done to take another picture and see if the tumor is responding. The plan is to wait.

So, since we’re waiting, we’re really, really thankful for all of the books, and stickers, and coloring, and painting, and arts and crafts you’ve sent us. We’re thankful our family is together. We’re thankful we are being held up (and held together) by your prayers and well wishes. We’re so thankful for the amazing dinners you are bringing us. And we are completely in awe of each of you. Our squad. Our tribe. Our warriors. And we appreciate how you model how to live for us. How you show charity and love for us by serving us, and serving each other. Like James. We are learning to slow down, breathe, and know that when something seems hard, we can do it. We can do this. #ItsJoTime

-CHW