“So, how is Sophie?”
This is a question Jenna and I get asked daily, if not several times a day. It signifies to me that we are so fortunate to have such a large number of incredibly supportive, caring, and compassionate people in our corner who would do whatever we needed if we just ask (and sometimes even without asking!) But as any parent of a young cancer patient can attest to, the question itself reminds both Jenna and I of just how complex the answer is. On some days our little Junie is doing good, other days not so good, and sometimes I can’t even make sense of the symptoms and progress to give a coherent answer myself. It also hits home just how up and down this journey has been for the past seven months and how it will probably continue to be just so. Somedays, when I’m not sleep deprived and full of coffee and the weather outside is nice, I feel like telling the asker to “sit for a spell and let me tell ya!” Other days I just want to hide, I don’t want to answer the question or hear the words because then I’m faced with the answer.
What we do know now is that after three rounds of chemo (aka stupid toxic chemicals that drain the life from our bodies) her tumor decided it would get BIGGER than when we started. What the shit was that all about?? A second chance risky surgery, which was even more successful then we could have imagined, resected about 60% of the tumor. This hopefully has given the next two rounds of chemo (which we just finished) a better chance at squishing this thing and we’ll confirm that this Thursday with an MRI. However, surgery did leave her with neurological damage that we hope is temporary, or resolvable over the next few months and years. Her left eye also is stuck staring at her nose, which probably contributes to some of her balance issues and fine motor skill loses. The eye thing might resolve on its own, but ultimately can be fixed by a simple outpatient surgical option (right here at UVA!) But the balance issue… right now she can’t even stand on her own, much less walk. This from a girl who was riding a two wheeler strider bike before the tumor struck.
She is making progress, though, as her spoon movements no longer wobble all over the map, and instead of wobbly spoon-to yogurt-to eye her movements are more like spoon-to dish of noodles-right into the mouth no problems! I think this is a huge testament to her stubborn desire to be independent even when her body can’t be.
But I think the top five responses I feel like giving to the question “so, how is she doing” can be summed up below (and probably better that they don’t escape my mouth):
1) She eats like a horse, even more than Lucas! In fact I think she wants to eat Lucas!
2) She pukes every three hours and eats and drinks nothing. How is that even possible, tell me?
3) She’s walking! / She’s not walking / Shut up
4) She’s basically kept alive at this point by an IV nutrition line going right into her chest that I hook up every night
5) Fuck you cancer
The answer I WANT to give I hope will someday be possible. I think it would go something like “she’s doing well, the tumor is not detectable, and with intense therapy we are seeing great progress. In fact, she’s playing the piano one handed now while writing the alphabet with the other… the Chinese alphabet, that she taught herself”. Saying that would be like drinking a big glass of water after a long run, or taking a nap after pulling a 16 hour shift of manual labor, or drinking your favorite beer after a really bad day of work. It would be something to savor, a moment to never forget.
So the next time you ask either one of us that question, forgive us if we are too wordy with the response, or quite frankly, have to suddenly excuse ourselves and go hide from the answer itself.