Update #12: The Waiting Game.

I’ve had multiple people text me today saying something like: “just letting you know I’m still thinking about you.” These people are unconnected, don’t know each other, and are from multiple states. I think that this means y’all need an update. 🙂

The days are mostly really good. Josephine is CRUSHING her goals in physical and occupational therapy. She is doing things she used to do, like play at the park, swing in our front yard, give her little brother hugs until he hollers, take baths, cook with me, and sing in the car. She has started being her gregarious self again on our outings, asking people what their name is in the elevator, running to hug a friend coming down the sidewalk, inquisitively examining and questioning each nurse and doctor about their equipment and notes, challenging friends and members of her medical team to Rock’Em Sock’Em Robots. She even picked some toys and activity books out of the enormous amount she’s received as gifts to donate to the Children’s Hospital for our clinic appointment this week. She proudly presented her bag of donations to our child life specialist, Katie, telling her that she wanted to add these to Katie’s closet so other kids could play like she has.

But, she’s still not quite the same. When she wakes up from nap she is inevitably in a horrible temper tantrum where she yells at me for moving my arm incorrectly. She gets tired and then turns off when people are here to visit, retreating to watch a video on her tablet and staying out of the conversation. She uses baby talk and doesn’t add s’s to possessive words. She isn’t eating. At all. Yesterday, she ate half a pickle and a handful of grapes. Today, she just nibbled the edges of a thin mint. She didn’t even finish the whole cookie. And that’s a thin mint, y’all! Do you even KNOW a soul who wouldn’t finish a damn thin mint? She’s just not quite right.

Her medical team is happy. Her weight is steady (thank goodness she’s still drinking plenty of whole milk), her numbers look good, her outputs are excellent, her energy is high. They say everyone who goes through radiation, steroids, chemo, has these same ups and downs. I just can’t put it all together. Why is she rubbing her ears and itching the bottoms of her feet? Why isn’t she eating? Why is she talking like a baby? What is the brain tumor doing in there? Is it shrinking? Is it growing?

She threw up last Friday night. She drank 24 ounces of milk in quick succession, then decided she wanted orange juice. It didn’t end well. As she huddled over the toilet, the memory of the weeks right before her diagnosis came rushing back and knocked me over. I ran out of the bathroom in tears, crumpled on the living room floor in a ball while my husband ran in to clean her up. She was fine after that. The nurses and doctors aren’t worried. We would all throw up if we drank a ton of milk and topped it with citric acid and toothpaste. Gross. But is this connected to the itching feet? The post-nap-wake-up tantrums? Did we go through six weeks of hell just to turn the clock back a few months? What is going to happen this week? Next? We don’t know. We’re waiting.

We’re waiting to see if her appetite returns after weening off the steroids.

We’re waiting to see if her taste buds get back to normal after weeks of radiation to her head and neck.

We’re waiting to hear her pronounce words correctly and return to normal speech patterns.

We’re waiting until her immune system strengthens so she can return to daycare.

We’re waiting for her muscles to build and her confidence to increase so she can walk down stairs by herself.

We’re waiting to take another picture of her brain and see what is going on.

We’re waiting to make a determination about the next step, next treatment, next procedure.

We’re waiting for an absolution that may never come.

We’re making the best of it. We’re being deliberate about scheduling time to play with friends. Ryan and I are working with the phenomenal team at Make-A-Wish to plan a once-in-a-lifetime trip for Josephine. We’re throwing cookie parties with her pediatrician’s clinic staff. We’re making our way through your coloring books, and activity sets, and board games. She’s such good friends with her clinic peeps, we’re even training her to be a good employee of Vandy Children’s. We’re making follow-up appointments with doctors in two, four, six months. We’re trying not to pretend that scheduling something for her that far out isn’t scary for us. We are focusing on her. 100%.

Today, we were able to be together as a family for a quick photo-shoot of the four of us. We were able to capture a moment without needles, IVs, or feeding tubes. We laughed and snuggled and chased Randall around the front yard. We’re waiting for the next thing. We’re focused on her. On us. #ItsJoTime

P.S.: Bonus points to the first person who calls me out for my cheesy Titanic reference. 😉

-CHW