Wednesday, July 6, 2011

Day Fourteen

Here is what I like to call pensive James. He is coolly regarding you as if to say "Hello. How good of you to drop by. Would you care for some giraffe?" For some reason he's always struck Kara and I as a particularly thoughtful boy. Even when he was very young, he rarely engaged in so called "normal" baby behaviors. He never napped much. He slept through the night early. His eyes were always darting about, inquisitively. He always seemed so engaged, so thoughtful. I know we're probably projecting a number of our own wants for James onto him, but we weren't the only ones who noticed. I'd like to think all of them weren't just humoring us.

Today represented an improvement over yesterday. I may be saying that solely because last night I went home and slept. After a few nights in the hospital, a few hours in bed can seem like lifetime. You emerge refreshed, coherent in ways you'd forgotten you knew how to be. I bargained with Kara that she'd take tonight if I did last night as James is NPO after midnight and therefore Kara's trump card, feeding, can't come into play.

Putting aside sleep, today went better because James got two tests in. The first, an EEG looked for seizures. We're still waiting on results. The second, an echo, looked at James' heart. I'm pleased to announce that another visit to the cardiac floor is not in our immediate future. I know it seems small, but yesterday we only managed to complete one test, the LP.

The other big event of the day was the move from C9, neuro, to C10, one of the oncology floors (the other is D6). Given that James' treatment in the future will primarily be through oncology, this made a lot of sense. James is not fundamentally a neurosurgery patient, he is an oncology patient. Sometimes I catch myself typing those words and I'm still surprised, two weeks, multiple surgeries and 12 nights in the hospital later. My son has cancer. It's true, but the shock remains.

Personally, I both shaved and got a haircut today. I look a little bit more like a human, and hopefully seem more respectable to the hospital staff. The neurology resident yesterday registered visible surprise when taking our history and learning that I was an attorney. Apparently I'm not looking the part nowadays. I'll have to wear a suit tomorrow or something and bring along a copy of the Civil Practice and Remedies Code or something. The neurologist followed up this unspoken surprise by telling Kara that he was glad I went home and got some sleep last night because "I looked a little rough."

The oncology floor rhythm is a little different, we're still adjusting. A different team of doctors means slightly different priorities- some items, like tylenol IV, are less of a big deal for the oncology people than the neuro people. It's a small thing but you notice the small things. There appear to be more oncology residents and interns than neuro residents and interns. You see more people, the floor is a little more crowded.

Thanks to my mother, Kara and I got out for a little bit today to grab some lunch and take care of the car. In my haste to get the battery fixed the other day, I apparently rushed the crew too fast, because they wreaked havoc on the sensors. The car would not shut up. We took it to the closest garage and they fixed it free of charge. Lovers Lane European Automotive. Good people. We grabbed lunch nearby. It's funny how before we used to hem and haw about where to go to dinner. Old worries just can't measure up. We turned into the first shopping center and went to the first restaurant we saw. There was no deliberation. We have gained perspective on our decisions. Dinner locations matter less. Menu selections rank still lower. We never ask for more time to look at the menu now.

James only has a few more tests to undergo before we can start treatment. A spinal flow study and an audiology test. Both require sedation, so they'll need to be separate days. We want to knock them out this week. Unfortunately the remaining tests, along with the fact that James continued to throw up whenever his zofran begins to wear off (twice today) means that we'll be delayed until the 18th. The oncology team seems untroubled by this delay and does not believe it will have any impact on James' prognosis. We take comfort in that, though we're disappointed, we also want James to be strong and ready to go when he starts treatment, rolling one hospital stay into the next is not the answer.

We're taking family pictures today (hence the hair cut and the shave) and even though the first round will be at the hospital, we're excited to dress James and to capture his essence. This probably means lots of pictures of us jumping and acting like fools in order to get him to laugh (for some reason I imagine him cackling and thinking "Dance puppets dance" whenever we do this) but we'll take what we can get.

Kara's making a cape for the photoshoot- because my son is a superhero, you see. I never had any doubts. The cape meant a trip to Michael's, where the staff treated Kara quite poorly. I'll let her elaborate, but I'd take a moment to advise the retail staff of the world not to rouse Mama Bear.

Aside from the two vomiting incidents today, James has been playing and talking most of the day. We're glad to see him talking- it's the surest way to tell he's feeling better. He's working on words, but to biased ears he can say da-da and ma-ma though I'm still not sure he means to. In addition to hsi giraffe paci, he now also has a monkey, lion, and puppy paci. The toy buying has gotten a little out of control.

As always, thank you for your thoughts and prayers. Especially in this time of uncertainty as we try to figure out what's going on with James, it is a great comfort to know that so many people are supporting him.


  1. I came across your blog through another blog "Glamorous Newlywed shopping" and have checked in everyday since. Your little James is so many things..He is a superhero, a fighter, a warrior,he is couragous,strong,lovable but most of all he is BEAUTIFUL!!! Praying from Arizona everyday for your little guy James! xoxoxox Shannon

  2. I can relate to you in so many ways. So many. I read along just nodding my head, remembering. I can't lie to you--this cancer stuff will mess with your head long after it's gone. This is a game changer. There are so many good things came out of it for us though--a stronger faith, a more burning desire to live everyday, a determination to give our kids the best life possible, an overall renewal of life.
    Still sucks though.
    You guys are not alone. The pediatric cancer world is small, but you'll be surprised at how many connections you will make.
    James is a beautiful boy and I know he has the fight in him. I can see it in his gorgeous eyes.
    We are in the Dallas area too; our hospital is Medical City. We had/have great doctors're right, the oncologists are definitely the talkers ;)
    Best of luck and praying for your sweet guy.