Day Sixteen

James is perfecting his crawfish in this photo. He's dressed for the first and last time of the day and watching the Very Hungry Catepillar on his DVD player. We're hoping to upgrade to a home theater system in the hospital soon, but until then James will have to make do with just his potable DVD player and his iPad. It's a hard life.

As I write that, I'm struck by the fact that no matter what I buy James, he'll be using it in the hospital. No matter how much money I spend- nothing will change. James will remain sick. He will not improve as a function of the money I spend, and I couldn't come close to even paying his bills without insurance even if I wanted to. I'm pretty sure we burned through my annual salary in the first week here. This just highlights the how powerless I often feel here. James, Kara and I are all too often acted on, we exist in a constant state of passive voice. It's not that we don't advocate for James- we do- but so many of the big things, his tumor, his complications, his health, are fundamentally beyond our control. We can respond to them, but we cannot control them. On some days, like today, we barely even manage to contain them.

James did not have a good day. He's clutching his head- clearly in pain even if he can't express it. He's vomitting still. His spinal flow study didn't go as quick as planned, so we have to wait a full 24 hours until tomorrow morning to check it. Please pray that the study was a success and the medicine traveled well through James' fluid. The alternative would require us figuring out why it didn't, and undoubtedly further delaying his treatment. We do not want to delay his treatment any further.

Even radiology this morning started out on a rough note. I spent the night at home, and arrivedf at the hospital after James was taken down for his study. I went to the radiology front desk as instructed. The receptionist confused James name, confused the year I gave her for his birth date, and paused two times to take phone calls while talking to me. Not how you want to start your day. For the final nail in the coffin, she had no idea what James' study was and equated nuclear medicine with X-Rays. We're way past X-Rays. The radiology staff was very nice, even if James did have to go under anesthesia yet again. The doctor who performed the procedure was the mother of two six month old twin boys. She loved James' hair. Sometimes, I wish people wouldn't- it just reminds me he's losing it soon.

The study meant James, Kara and I had to go back and forth to radiology several times today for pictures to see how the fluid was progressing. This meant just as James became comfortable, we were headed back up with transport. James' mood worsened through the day. He's coming off steroids, which put him in a bad mood, in pain, and moving all the time. Not a great recipe. In addition, because we thought we might go home today if the study went well, James' meds were all switched to oral. James hates oral meds. He will literally do hold them in his mouth and spit them back at you for minutes on end. This is fine for most of them, but when he spits out the zofran, we have a problem. Because then he throws up. And that begins the cycle. The cycle began around 4 today, right after we received the deflating news that we would be here another night. James was a little overdue for zofran, and he threw up. We waited and tried again later. He threw up again. If not actively medicated, he throws up. No one seems to know why. Theories are floated. Kara and I are proponents of the subdural edema theory- the fluid build up around his incision site for his big surgery. The problem is, there's no shortage of potential causes. There are lots of things doctors think could cause James' nausea right now. There is nothing they think is causing James' nausea right now. We're trying to manage his pain better now. We hope it helps. So far it mostly just seems to be speculation on everyone's part. James can't say anything, so we don't know what he thinks. The situation is frustrating, and it's difficult to see James suffer, especially when we don't know why. Pain for chemo or treatment is one thing- it has a purpose. This is harder. It doesn't have a purpose and we don't know what it is. He's back on IV zofran and fluids now, and his weight is below what it was when we first admitted back on June 22 after he'd spent eight days vomiting. The doctors are trying, and all of the oncology doctors hear us out, we just can't seem to get to resolution.

We're hoping the following things happen tomorrow. 1) James' spinal flow study is a success. 2) We figure out and treat his nausea so that he can be strong to start chemo. 2 is definitely our number 1 priority- we'll figure out 1 if we have to get there. We just feel like we had a week- 1 week- to spend at home before everything, and now we've spent that week in the hospital. And no one can explain the problem that brought us back in the first place.

That's not to say random, unexpected things don't still happen that make us laugh. One side effect of your child vomiting every hour or two is that you go through weeks worth of clothes in hours. This translates into laundry. There is a laundry machine on the floor that we've monopolized all day. But it's not without its hazards, as Kara discovered today when we washed a load including a pillow. When we returned, the laundry machine had moved from the wall to the middle of the room, the machine walked forward by the unbalanced load. Kara was so proud.

That's a thumb up of approval. The laundry machine survived. In a weird way, it was one of the best things that happened all day. There are so many times in any given day when we feel like we're hitting a wall that these things are always funny.

Let's hope for a better day tomorrow. As always, thank you for your prayers.

Day Twelve

Today we planned on a parade. Our neighborhood has a 4th of July parade every year. There are streamers on bikes, wagons, and strollers. We wanted to take James. We talked about it last year while Kara was pregnant and counting down the days of summer. This year, we thought it might provide one more thing to do with James. Outfits were matched. I wore a blue polo with red white and blue plaid shirts, Kara wore a red white and blue shirt. James had an outfit that matched my shorts. We drove through the parade on our way to ER today. We never even got to streamers on the stroller. Needless to say, that was not the plan. Nevertheless, as you can see from our outfits, the festive spirit was certainly there. We're still hoping we can see some fireworks from the room later. I'd also like a "U-S-A" chant from the nurses just because I think it would be amusing but I'll settle for fireworks.

James woke up throwing up. We gave him zofran, his anti-nausea medication. He threw it up. We thought that part of the problem was how angry he's becoming whenever a syringe of any kind comes near him. We mixed it in a pacifier. He threw it up. We gave him zofran orally, a tablet that dissolves in his mouth. We had some left over from our first visit to the ER, before he was diagnoses. He still threw up, even without eating anymore. We started two loads of laundry before we left home and did another once we got back to the floor.

We gave in and called the neurosurgery clinic, where we eventually connected with the attending neurologist on her cell phone. She told us to come in. We'd barely unpacked, and by 9:45 we were signing consent forms in the ER again. Like last time, we found ourselves whisked back to the ER with no wait. A different room. The nurses recognized us. Even the front desk greeters are beginning to get familiar with us. We're past the formalities of "How can I help you?" we skip straight to getting our badge.

The most distressing part of the day was that no one really knows what is wrong with James. his CT scan is clear, but he's throwing up on zofran. In addition, his eyes have acquired an upward gaze that they really shouldn't have. We're worried about seizures. Still, all the tests are clear so far- and because it's a holiday weekend, we're on hold until we can get more tests performed tomorrow. We're very frustrated because James appears to be getting worse, not better and no one knows why. He'll have a lumbar puncture for sure, and other tests will follow. As the over-extended (and only Dr. around today) resident said we're "running the traps" a phrase which took me back to Con Law in the worst way possible. Our biggest fear now is that whatever is going on with James will delay beginning chemo, which we can't do. James needs to start fighting sooner rather than later.

The culmination of this frustration meant a rather contentious exchange with the nurse- Kara and I demanded that someone, anyone, tell us what the hell was going on. Kara went a little Mama Bear on them, which meant we got to play a little good cop bad cop. You know you're the good cop when they try to talk to you first. The staff here has been great, and it's not their fault it's a holiday, but babies get sick on holidays. The best we got was a call from the neuro resident (who was dealing with a trauma in the ICU) to run through all the options we didn't have and to let us know tomorrow was on its way. This didn't really satisfy us, but our options are somewhat limited, and thankfully James remains stable. We count the small blessings. So we'll start up again tomorrow.

Here is little Jamesie after the one feeding which he did not vomit today (so far). He's tired, but as always, nothing puts the boy at complete peace like the boobie. It is his all-purpose healing balm.

Whatever is causing James' sickness, we want it cleared up so that he can get on to the important business of attacking and destroying the tumor. James Camden Sikes dislikes this inconvenience, but would like the tumor to know that no amount of delay will get in his way.

I hope everyone is having a great Fourth of July! Light some bottle rockets for us. I'd give James some poppers but I fear the consequences. Thank all of you for your thoughts and prayers, they are a constant source of comfort.

Day Eleven

The two pictures above are from our homecoming today. The first picture is of James and Kara catching a well deserved rest. One of James' favorite resting places in on someone's chest on the couch. He doesn't really care whose chest. This is after James got his first dose of at home lortab, so he's in a good place.

The second picture represents our "loot" from the hospital. When you stay in the hospital, all sorts of things accumulate in the plastic bins in the front of the room. When you leave, it's a bit like leaving a hotel room. What should you take? You ask the nurse. They say you can take anything. Kara and I had the following conversation:

Kara: So what should we take?
Me, hurriedly packing: I don't know. Everything? Just throw the bins on the cart.
Kara: Ok

As a result of this planning, we now are the proud owners of he following items:

4 Thermometers
1 Stethoscope
5 Rolls of tape
1 week supply of baby food
1 suction clamp
1 symphony breast pump hook-up.
1 intubation kit
1 blood extraction kit

We're thinking of opening a clinic. I think the home intubation kit will be especially useful. How many times have you needed to give your child a breathing tube and not had the proper equipment after all? Those are just problems we don't have anymore.

Today started out well. By the time I returned to the hospital with two venti caramel macchiatos in hand (so far we've gone through $70 in starbucks gift cards) they'd agreed to discharge us even though James still was throwing up. Whatever the problem is, they said, it's a low-line and not showing up on any scans. We're hoping it will just clear up. So they sent us home with some medicine for nausea and instructions to return if his responsiveness level changed in any way. So far so good. James is throwing up still- especially when he gets upset, but although he's fussy he seems to be all right otherwise. Still, if he gets dehydrated we'll find ourselves back at the hospital so we're praying that he keeps everything down. He's thrown up twice since we got home, which is not encouraging. We'd like to avoid a Fourth of July in the hospital.

Lately, it seem we're on edge about everything. James' sickness. His unknown complications. His vomiting. His medications, the way his eyes look. Are his pupils more dilated than they should be? is he responsive? Are his eyes looking up in the wrong way, or down? Nothing seems safe, we keep hoping that James will at least be well for this week but so far no luck. There is no sense of baseline comfort or normalcy. Case in point: While I was writing this post, something from the back of the house started beeping. For whatever reason, we assumed it was one of James' monitors somehow telling us he wasn't breathing. We rushed back to his room to check on him only to discover it was actually the phone being paged- Kara hit the button on accident while unpacking some groceries. The residual sense of safety that we once enjoyed at home is gone. Still, we try to find humor in things. Our home intubation kit. Our reaction to the phone pager.

Although James has been fussy, he still finds ways to bring us joy. You can tell that even when he's not feeling well, he wants to laugh, he wants to be having a good time. He can't resist smiling every now and then when we do something he thinks is silly. He loves it when you do unexpected things, throw the dog in the air, jump up and down, look at him upside down. We just want him to feel well enough that he can enjoy himself more.

Overall, being at home is much more relaxing than being at the hospital. The days seem longer and time passes with more purpose. It's more comfortable, the beds are real. James has all of his toys at hand. These are all good things.

One other thing being at home has given us a chance to do is to see all of the cards, gifts, and other messages of support we've received. It's overwhelming to see how many people are thinking of James and praying for his recovery. Thank all of you for walking with us.

Day Nine

In this picture, James is exploring the finer points of baby piano on his iPad. Yes, my son has an iPad. Don't judge me. James discovered that if you hold down the piano key on baby piano it goes CRAZY. In what I would describe as a really obnoxious repetitive tone, but which he seems to quite enjoy. As you can also see from this picture, today also got derailed. James, Kara and I are back in the hospital. This picture was taken in the ER and we're now back on the floor.

When we left the hospital, James received several prescriptions. One, a steroid, makes him sick everytime he gets it. In the hospital before we left he threw up several times, we were hoping this was a response to the steroids. A complication of the major surgery he had on Monday is swelling of fluid in the brain- different from the hydrocephalus he suffered from before, as the fluid build up takes place elsewhere. My crash course in neuroscience continues. Like the hydrocephalus, which is now treated, this makes him throw up and could become more serious.

When he threw up once we wrote it off to a reaction to the steroids. We did the same thing the second time. by the seventh, we'd called the neurosurgery clinic three times and James was also running a fever. After attempting to bargain out an alternative with them, we received instructions to make our way back to the hospital and get to the ER.

Because our live is incomplete without further complication, Kara's car wouldn't start this morning. I jumped it and hoped that the battery just ran down during the week it spent parked in the hospital parking garage. We took it to an appointment and I followed in my car to make sure we did not become stranded. Kara's car didn't start afterwards. We switched cars. Naturally, this coincided with the time when we got our orders to make it to the ER. I went to three different stores on the way home to find one which carried and installed the battery for the car, yelling at the service people in the bays because I didn't want to waste time and get out of the car. Finally I found one who would do it, a little before Kara left with James for the ER. The salesman seemed taken aback when I expressed complete disinterest in the price and informed him I needed it ASAP as my wife was taking my son with a brain tumor to the hospital. To be fair to Firestone Tire and Battery, I've never seen mechanics move so fast.

By the time I arrived at the ER James had already received a CT scan. I walked into a battle between the ER nurses and Kara over whether or not to give James an IV or just give him fluids and meds through his port. After a little skirmish, the port prevailed- Kara and I simply felt that because James had surgery to provide an access point, we didn't need to add anymore and stick our boy yet again. At this point he's had lines in every extremity.

The ER experience was perfectly surreal. I associate ERs strongly with waiting, the last refuge when you're simply so sick you have no choice but to deal with actually going to the hospital. Kara told me that as soon as James arrived and she spoke the words "brain tumor," "craniotomy," and "vomiting" the staff whisked them away with no wait, no forms, no anything into a room. In the examining rooms we were surrounded by families with children suffering from severe colds, stomache bugs, broken legs, all the normal ailments of childhood. Despite myself, I felt jealous. Jealous of their time in the waiting room, the time their kids spent playing with the toys. Jealous of the fact that in a few hours, they would go home, not to return for a year or two. Jealous of their viruses. I know that James will never experience any of that, even after this. He will always be "special" medically. Special care. Special attention. A priority for all the wrong reasons.

Cancer eyes everywhere. The doctors. The staff. The nurse with a son named James too. All of them biding time until we made our inevitable ascent back to the floor. Neuro wanted to watch James to make sure he could keep down food in order to make sure the swelling subsided. The CT revealed nothing new fortunately. We returned to the floor and a new room, just like the old room. I felt defeated, even though I knew we'd be back in the hospital soon. I just wanted a week with family.

In many ways, the all-consuming terror of the first days few days has abated. What remains is a steady background of fear-the specifics are less terrifying, the possible swelling, complications. What remains terrifying is the knowledge that the experience itself will not be predictable, and is uncertain in and of itself. I am sure we will endure countless more unscheduled trips to the hospital, and provide more of the ER staff with the condensed version of James' history than we can imagine. Kara and I put together a "hospital bag" so we'll always have something to bring with us to the hospital on the spur of the moment. It reminds me of the bags we packed for Kara's labor, except we've replaced excitement and hope with fear and dread.

Tonight we're settling into our "hospital" routine. A nurse comes to check James' vitals. We barter for less vital checks if we can, confirm medications. Kara feeds James. We set up his portable DVD player (yes, he has a portable DVD player AND an iPad) on the dining tray and start a movie. We hope he sleeps, pull out the couch/bed and cram ourselves on it.

We are hoping to go home tomorrow- naturally, now that we're here James appears to be doing much better. He's more alert, less fussy, and so far has not thrown up again. We're optimistic this trend will continue and we'll get home tomorrow in time to start our week out right.

Thank you to everyone who helped us out today- as our plans changed, so did our needs and several of you were kind enough to accommodate us. Without the network of support that you all provide, this experience would be much more difficult. We are in your debt for all of your thoughts, actions, and prayers.

I'll close with a picture of Kara and James from a few weeks ago, enjoying dinner at Twisted Root (which sounds delicious right now). By close I mean open. Does one of you know how to position pictures on this thing? Because if one of you is blog savvy, I'd appreciate the help. I disengaged with technology sometime around 2007. I blame law school.