Update #10: The Final Countdown

#ItsJoTime

Today we colored in the penultimate square in our tracker, a picture Josephine has come to love. When I first colored it, on my hands and knees in her hospital room, she yelled at me the whole time. She refused to participate daily when I colored in her progress, and would roll her eyes when I showed it to other people. Now that we’re at home, she’s almost completely off of the steroids, and the representation of her journey is displayed prominently in our kitchen for all of her visitors to see, she has much more pride. She’s been obsessively reminding me to color in the clovers and bricks nightly and today, didn’t even wait for lunch to be over before she wanted her next-to-last radiation marked and celebrated.

Tomorrow, we will march into the radiation lab blasting “The Final Countdown” on a bluetooth speaker, wearing Easter formal wear, Mardi Gras beads, red lipstick, and blowing bubbles. Tomorrow, we will ring the big bell. Tomorrow, we will color in the final brick. A journey six weeks, 42 doses of chemo, and 31 radiation treatments in the making. Tomorrow, we will stop the tiny amount of steroids we’ve weaned her down to. We’ll stop the antacid that accompanies it. We’ll remove the access needle from her port. We’ll remove her NG tube. She’ll wake up from anesthesia as normal of a kid as she has been since June 6, 2018.

Exciting, right? A day we’ve looked forward to since June 14. So, why am I scared shitless? Why is my heart pounding loud and quick in my chest as I write this update? Why am I having a hard time thinking about what we’re going to do AFTER tomorrow?

I am, personally, very good at working a plan. I’m very good at planning. I’m good at winning games I know the rules to. And up to today, that’s what I’ve been doing. We had a game plan: 42 doses of chemo and 31 radiation treatments. Ryan, Josephine, and I have worked out how to be the BEST patient. We’ve gotten it down to a science. Now the game plan is done. We’re done with our “to do” list. Now, the only thing left is “wait.” I’m not good at that. As tomorrow has gotten closer over the past week, I’ve started to feel more and more nervous. Nervous that when we stop treatment, her symptoms will return. Nervous that when we pull the NG tube, she won’t get the nutrition and hydration she needs. Nervous that we’ve already played our ace and if her scans at the end of August show not-much-progress, we might be out of face cards. Will we be able to craft more plays at the end of this play book? We aren’t sure.

Besides telling all of you this, I don’t know what else to do. If you pray, we still need your prayers. If you meditate, we need your focus. If you make funny videos, we still need you to send those our way. And, if you challenge people to lip-sync battles, BRING. IT. ON. (Josephine is almost back to game shape in the singing department.)

We can’t say enough about our wonderful team at Vanderbilt Children’s. The nurses, anesthesiologists, radiation oncologists, care partners, volunteers, and pediatricians who help us daily are phenomenal. I trust them completely because I see in their eyes how much they love our Josephine. She truly seems like a different kid than the first few days of these treatments. This week, she’s WALKED back to the treatment room every day, and one day she even walked all the way from the car to the radiation lab. Most of the time, she’s deep in conversation with her anesthesiologist or nurse and doesn’t need Ryan or I until it’s time to get down to business with the anesthesia. While the tantrums haven’t completely disappeared, they are shorter and farther between. She has had enough energy to sing in the music studio, go to the art museum with friends, pick out flowers for her nurses at the wholesale florist, and even requested a trip to the park today. We’ll be continuing physical, occupational, and speech therapy for the next few weeks and are looking forward to hearing the results of Jo’s next scans at her next clinic appointment the first week of September.

So, if you hear some loud music, ringing bells, and whoops and hollers tomorrow morning, it’s us. We’ll be rocking out the last of this to-do list and then turning to you guys to get us through the next few weeks. Its the Final Countdown and #ItsJoTime.

-CHW