Thursday, July 7, 2011

Day Fifteen

Allow this photo to serve as a preview of our photo shoot today. Our photographer, Katie Norris, her assistant Brook and videographer David took some better shots. In particular, I strongly suspect that none of their photos include chairs, trash cans, rocking chairs, or needle disposal boxes in the frame. My taste level leaves something to be desired. As you can see, our outfits coordinated nicely. Kara looks fantastic in her white dress, and James is dashing in his navy shorts and white shirt. Offscreen, I'm rocking linen white shorts and a white shirt with cyan, indigo, and cobalt stripes. So basically blue stripes. Thank you to our friends from the "Quad" for coordinating the outfits.

The best word to describe today was hectic, as Kara called it more than once. After spending the night at home, Kara woke up early and came back to see James off to the procedure we were told all day yesterday would take place this morning. 8:00 comes and nothing happens. We bug the nurse. 9:00 comes and still no word. Finally, at 9:30 we're told that an error was made in James' orders and in fact no procedure is scheduled today- what we thought was today is actually tomorrow morning. This upset us, because James could not eat all last night due to that order. Frustrated, we fed James. He promptly threw up. The day never really recovered from starting out on this poor note. James is on steroids, so not only is he a hungry baby, he's a hormonal hungry baby. Pinching, screaming, fits, are all amplified and compounded by that James simply does not want to be in the hospital anymore. For whatever reason, he never really recovered the better mood he was in yesterday. I don't blame him. I doubt I'd be pleased if I was hungry all night and then threw up breakfast to start the day.

Rounds began at 6:30 and throughout the day we cycled through the three disciplines we've now involved in James' care. Neurosurgery came early and alone. They do not know why James is throwing up. Oncology came often and in ones, twos, and fours. They do not know why James is throwing up- but strongly suspect it has something to do with his head. Neurology came twice, a warm up visit and a full on assault by the attending and his groupies- one fellow, two residents, and two med students. A microcosm of the physician food chain. They do not know why James is throwing up but are pretty sure it's not seizures. They'd like to do a day long EEG to make sure though, but they're indifferent about actually doing it. I'm inclined to agree with oncology's opinion. Unfortunately, there's enough options that it's tough to nail just one down, and none of the twenty or so doctors that have seen James have a great answer. James' swelling from surgery will not subside for several weeks, so we're unlikely to discover what the cause is before we add another potential cause, chemo.

Although nothing happened today in terms of tests or procedures, the day flew by with doctors visits and minor complications. James' port got off center- his skin puffed up with fluid and we had to de-access and re-access it. Decisions about medication came and went with a number of different prescriptions proposed and rejected before we settled on oral zofran.

Two big oncology events occurred today. The first was a visit from one of the oncology discharge nurses, who took an hour to walk us through the grueling process of what chemo looks like. The short version is that chemo is miserable. It will change James in ways that I am frightened to think of. It will interrupt the happy life of my son and replace it with something altogether awful. Yet while the nurse ran through the litany of sores, hair loss, nutrition loss, transfusions, infusions, ANC tests and 101.5 fevers, it never occurred to me to ask for an alternative. In many ways, the decision is simple because there is no decision. James must be treated. There is no acceptable alternative. Kara and I read about a couple whose doctors gave them only a 30% survival chance. They opted not to pursue treatment. We both simply couldn't understand the decision. I would pursue any chance, through any means, to ensure James' health. What he undergoes now will not be pleasant. There is no sense in pretending otherwise. But we know that for James, there is no other choice. We have to choose hope for James, and for ourselves. The nurse comforted us with a thought that's occurred to me many times over the last two weeks- James will never remember this. He will simply be better, and marvel at the story we tell him to explain his scar.

The other oncology visit of importance was to obtain consent for James' treatment. We must agree to treat him, to allow everything to happen to him. The oncologist appeared prepared for a much more detailed discussion- as so many of our questions were answered during previous visits, we actually didn't have very many this time around. Only the formality of signing off remained. Still, we were pleased that the oncologist appeared willing to talk. Oncologists usually sit if you give them a chance- which in my mind is a commitment to an actual conversation. We appreciate that. The doctor told a story of a couple- both real estate attorneys- who returned the consent form marked up, with side effects they didn't want crossed out with initials. I laughed at that. As if you could contract for side effects. If only. Why bother to initial out only the side effects? Why not just change the diagnosis while you're at it? Despite its formality, the act of consenting still served to reinforce the reality of the situation. I am agreeing to this. This is actually happening. My son has a brain tumor and needs a year of chemo. Small details like consent always bring home these facts in a way that thinking of them never does. The other small, but all important, detail revealed during the consent visit was the date James' chemo will begin: Thursday. July 14, 2011. Please pray for us and for James on this day as we begin our journey in treatment. This day is a compromise between the 11th and the 18th, so we're pleased to be starting as early as possible.

The consent visit actually interrupted our photography session. Fortunately, the photographers were gracious enough to agree to come to the hospital to take some photos for us. We're hoping we can do another, less sterile shoot once we get home (if we get home) to take advantage of James' many props and hopefully improved disposition. Unfortunately this first one had to be at the hospital as we never made it home this week. James threw up 30 minutes before it began, and we barely finished cleaning him up and getting dressed in the time between the oncology nurses' hour long visit and the start of the shoot. The frustrating thing about hospitals is the complete lack of schedule. People always ask us "what time" they should visit. The truth is we have no idea, because we have no control. At any time, something may happen. A doctor may come in. James might throw up. There is no good time. There is only time, great swathes of it where nothing seems to happen and then everything happens all at once. The day happens to you when you least expect it.

Although we hopefully did get some good shots, James' mood never improved to where we had hoped it would be and he eventually declared himself done. No matter the result, we enjoyed getting him dressed and outside. It's amazing the difference putting him in clothes again makes. He looks so much more like a baby- so much healthier wearing more than a diaper and leads.

Nevertheless, James' fussiness was hard for Kara and I because James used to love the camera, his bright beautiful smile never cared about the time of day. Now, when he's sick, we have to work hard for that smile. He's still there- but on rough days, like today, he's harder to rouse. Even though James had a rough day, we are very grateful and blessed that Katie and her friends took time out of their days and schedules to come work with us. Hospitals can be out of the way in the best of circumstances, and we deeply appreciate them working with us.

While I'm on the subject of thanks, I'd like to thank anyone who has brought us food, gift cards, or anything else over the last few weeks. You have no idea how much easier this has made our lives. Only James gets food in the hospital. Kara can get occasional room service as a breast feeding Mom, but the less said about that food the better. The dinners and lunches you all have provided have spared us many trips outside of the hospital and treated us to much better food that we'd otherwise be suffering through. Similarly, we had no idea you could spend that much in Starbucks gift cards. Thank you for enabling our addiction. And as always, thank you for your prayers. They are even more essential.


  1. I may have missed it somewhere but is there an address where people that may not personally know you can send things? Praying for you everyday.

  2. We are still praying for sweet James!!!