The Top Floor

There is a place in the hospital where I used to go to pray. Not quite in the hospital, but on the top of the parking garage. The top floor of the Green garage, to be precise, and to avoid confusion with the blue and the purple garage. I took the stairs from the place on the fourth floor where the walkways intersect, one headed to the purple garage and still more distant parking, the other to the blue. The Starbucks is squirreled away there between the walkway and the Bright building, where the outpatient clinic for the oncology department that James never would have gone to receive treatment if he'd ever become well enough to be treated. We toured it once, and I remember looking forward to a day when James would spend only his days and not his nights at the hospital.

I took the stairs from the walkways to the top floor of the garage in the morning, after I'd grabbed coffee, double fisting venti skinny caramel macchiatos past a steady stream of doctors and nurses migrating from the garages to the hospital, bleary eyed with coffee in hand. Some would nod to me in some sort of unspoken recognition, as with my uncombed hair and inevitably stained shirts I looked exactly like what I was, someone who lived at the hospital.

At the top of the stairs I walked outside of the glass vestibule and its chilly air conditioned bubble onto the bare concrete roof of the garage, towards the edge of the railing where I rested the cups of coffee. The view was- is- spectacular, the whole Dallas skyline. The building I work in, all the others, gleaming in the sun. It was warm as well, a welcome respite from the sterile coldness of the hospital. More importantly, it was quiet. Of all the memories that have stayed with me from the hospital, one of the most enduring is of how loud the place was. Even with nothing going on, the constant whir of instruments and the steady beeping of vital signs never ceased, there was never a truly quiet moment. No one bothered to park on the top level of the garage though, so I could always count on it to be silent.

It was here that I prayed, removed from the air conditioning and the noise. I looked towards the skyline or to the interstate and begged God to heal my son. Some days I cursed him. I never close my eyes when I pray, I just think and stare into the distance, as if God will suddenly decide to stare back at me. The ritual of closed eyes and bowed heads always seemed strange to me, even as a child I couldn't imagine why God, if he was everywhere, need only be deferred to when I paid attention to him. Eyes wide open, I'd look around at those in prayer, wondering at their devotion.

Prayer does not come naturally me. There are some people for whom prayer is effortless, a natural effusion of their thoughts, feelings, and devotion. I am not one of those people. Even as a boy I remember being bored in Religion class in Catholic School, patient enough to learn the words but confused and annoyed that anyone would want to sit and say a rosary- sometimes more than once. I certainly did not have that kind of patience. Did God reward repetition? Nevertheless, like any good Catholic, the words of the Hail Mary were often used as a prophylactic litany against all manner of fears, from bad dreams to a call from the principal's office. Now and at the hour of our death, Amen. So it was strange to me to make prayer part of a conscious routine, a regular stop between the Starbucks and the James' room, steaming coffees in hand. I do not remember the first time I went, or how the routine got started, or even why I decided I'd explore the top floor of the parking garage in the first place, it simply crept into my days.

I never stayed long there, never long enough for the coffee to go cold, just long enough to utter a few words and to pray for the life I wanted James to have, the one I hoped God was somehow preparing him for. The family I hoped he'd have, the teenage rebellions I hoped would be less damaging than my own. I remember thanking him when James' surgery was a success, and asking for more successes, small ones I hoped would build into larger ones. I ended each visit with the same request "Protect my family" I asked, over and over again.

Since James died, I have often asked myself why God didn't listen to me. I have wondered why he let my boy die. Why we lost him so suddenly, before we even had a chance to register at the outpatient clinic or anywhere other than hospice. James' time in hospice was even abbreviated, our schedule with the nurse never materialized, James died too soon for schedules. I have been angry.

The more I reflect on those prayers though, the less angry I am. There, alone, I could pour out my fears, my regrets, and my guilt. I could do something for James in praying for him that I never could do in the hospital, no matter how hard I tried, and just ask for him to be well. You can't ask a doctor that question- their concerns and your questions are more granular, what to do about the extubation or the meds James is getting. Wellness is part of a grander plan, one you are aware of but has very little to do with your day to day. Perhaps God didn't answer me as I hoped he would, with a healthy James. He knew of course, that James would never be well again. But he let me talk it out, there on the roof of the parking garage with my coffee. He let me bargain and wheedle, ask for miracles and cures. He gave me that place, away from the relentless action of the hospital to collect myself, and to talk to him. He did not answer my prayer literally, but he protected my family. He took James before he suffered through chemo, before spinal taps and IV drips of toxins became routine, knowing they would never work. He let me release all my fears, my guilt to him, so that I could care for James when he needed me most. He gave us all the support we could ask for, we were swarmed with people who cared. So I am not as angry as I was. I don't think I wasted my time at the parking garage. If anything, I am glad I went. I'm glad I prayed. Sometimes though, I still wish I'd received another answer. In a lot of ways, I'm still waiting for one.

Day Seventeen

James is munching on a mum mum (mango cardboard flavor) and enjoying not being in writhing pain for a bit. The fact that the mum mum, which he can feed himself, heaven forbid you help him feed himself. In many ways, James is fiercely independent. Today he felt more himself and we had to remind ourselves that when James feels well, he really just is not a cuddly baby. He likes to be on his own, to explore and to do what he wants to do. He gets annoyed when you hold him in one spot for too long- he wants to choose his own course. Sit his own way, lay sideways on his stomach, and feed himself without your help. It's his natural state. Laying on your chest is something he does only when he's sick, when he needs you. When he's well he doesn't.

The fact that we had time to remember this today is a testament to the fact that James feels much better than today than yesterday. The night did not go well. James threw up everything, his zofran, his lortab, his prevacid, everything. He went back on fluids. We switched to IV zofran and he kept throwing up, even with the max dose. He clutched his head constantly in pain. The go home plan, which is dependent on his oral meds, went right out the window. On one hand however, I'm glad we were here and not home when James spiraled downwards.

After James threw up on the way back from his flow study- all over me and the paramedic transport, a meeting with the oncologist was in order. After the long night, Kara and I were extremely harried and more than a little frustrated. One thing I like about this oncologist is that he has a very reassuring, consistent presence. His mood seems very stable, which when you're up and down all the moving from crisis to crisis, is a welcome trait. He also has a tendency to dress in what I would call Country Club chic. If our neurosurgeon cultivates the sports car and colorful, expensive suits look- the best analogy I can think of is the "Shark Tank" panelists- the Oncologist with his polo, dockers, and glasses, feels more like someone you'd meet at a country club who drives off in a Lexus. For whatever reason, I find country club chic reassuring. Given that he's probably spent three or four hours reassuring over the last few days, the consistency and the patience is greatly appreciated.

The talk with the oncologist resolved some important issues. He reassured us that though James' recovery from the surgery was on the wrong side of the median, he was still well within the acceptable range and none of these complications would interfere with beginning chemo. We changed James' medications and introduced IV pain meds to control his pain, though the initial dose snowed him completely, we eventually succeeded in getting a dose that kept him relatively content and still somewhat alert. We also reintroduced the steroid- we'd prefer to be off the steroid, as it can interfere with chemo, but it helped James in the past. The combination of these medication changes certainly helped stabilize James. he's not writhing in pain anymore, his vomiting appears under control, and as a result everyone is much less stressed. The other bit of good news is that his flow study which was not going well yesterday resolved itself overnight, all clear. We're an audiology test and an admission away from starting chemo, and if we can transition successfully to oral meds, we'll be home before that begins. It's possible we may not be however, and we're trying to be comfortable with either outcome. In the grand scheme of things, days at home are unimportant compared to beginning James' treatment.

The other good news today was that James' most recent CT scan came up clear yet again, confirming that he's not suffering any increased pressure in his ventricles and developing hydrocephalus again. James has had four CT scans now. Back in April, we were on the fence about even doing one because of unlikely, but potential, complications. They're routine now- we know exactly where the room is. Any potential complications are immaterial given James' condition. Once again, priorities have shifted. For memory's sake, here's a picture of Jamesie getting a CT. We call him "baby burrito" because of the way they wrap him up. He hates it. As I said, he likes to wiggle.

In the scheme of procedures James goes through, it's small one. It's no MRI with general anesthesia. Not even a rapid MRI. It still seems bizarre to me that these are things I actually think.

In any case, James appears much improved today, and we're glad. We're still worried that when we try to transition to oral meds the cycle will start right back up again, but we're hoping that this time, with a little more healing, James will be himself for longer. We miss our wiggle worm.

As always, thank you for thinking of James and praying for him. I continue to be overwhelmed by the number of people, from strangers to people I haven't spoken to in years, who have been in contact with us about James.

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 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.

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.

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 Ten

While previous posts might indicate that James prefers Apple products, as you can see he's equally content to munch on Android/Samsung phones. Here he's taking a bite out of his mother's phone because he can't imagine any better use for it. As usual, he's right. The highest purpose of any phone is chew toy.

Of all our days in the hospital so far, today felt the most uneventful. In many ways, this also made it the most frustrating. It is one thing to accept that you are in the hospital in advance of or recovering from some major procedure, like brain surgery. It's another to play a waiting game because no one really knows why you're there except that your son is very sick, and there are so many possible causes of his current symptoms that you need constant supervision.

James had a relatively uneventful night. Kara and I returned to the couch/bed and found that it was actually worse than we remembered it. At one point I remember waking up and thinking to myself that my entire right side was asleep. I wondered why, and then realized that it was just a byproduct of sleeping on that bed. It was that hard. A night away meant a better night's sleep, and less exhaustion meant worse sleep on the couch/bed. After we arrived yesterday and James received his anti-nausea medicine, he didn't throw up.

We were optimistic that whatever was causing his symptoms had passed- in fact, after getting some fluids and eating a bit James appeared to be in a much better mood. We hoped that whatever made him sick before had passed. At 7:30, he threw up again. We got more medicine and the Doctor on call (our neurosurgeon and many others are taking advantage of the holiday weekend) told us that they wanted James to go 24 hours without throwing up without medicine. Our countdown began at 8:30.

The day went as well as it could. We took James for a walk in his stroller around the hospital. We stopped to look at the trains (Children's has what is easily the most impressive model train set I've ever seen) which James pretty much ignored. We went outside and walked around the garden a little bit. It felt nice to get James out in the fresh air. I remember wondering when the last time he'd actually been outside had been, and wondering when the next time would be. Once chemo starts, he'll be limited to indoors and at home. The summer sun felt nice, the hospital temperature never feels right no matter how much you tinker with the thermostat, and you forget the season when you never go out.

We had several visitors, including Kara's new set of personal shoppers. One of our goals for this week is to take a set of family portraits before James becomes too ill and loses his hair. Some of Kara's friends were kind enough to go and purchase clothes for the event. I think we're going to look quite stylish. Given that earlier that day Kara asked me to change my T-shirt because it had "10 years of stuff on it" and I responded by spilling soy sauce onto my shorts, at least one of us can use the help.

James felt better today. We were particularly encouraged that during the walk he did very well holding his head up and sitting up on his own again. While he'd mastered that skill months ago, along with crawling and other milestones, he's regressed since his surgery. We were pleased that he seems to be regaining some of his strength.

Our countdown began at 8:30 AM. We made it to 8:00 PM. James threw up again. The countdown reset. We feel frustrated that while something is certainly wrong with James, so far no one thinks it's serious enough to do anything major about. Part of the problem is that because of everything James has been through, there are just so many potential causes it's hard to nail just one down. Residual tumor. Surgery in and around the cerebellum. Blood in his cerebrospinal fluid. Fluid accumulating on top of his brain. Six rounds of general anesthesia. Any, all, or some of these problems would could be the cause. And so we wait.

We're just watching, and if it were up to us, we'd do that at home where we can give him the nausea medicine just as well as they can here. At the same time, we don't want to leave when the kind of complications he could be suffering might worsen and become serious. So here we are.

The one week we thought we had before James' life turned upside down is slipping away one hospital day at a time. Tomorrow is Sunday. We'd wanted to dress James in one of his fourth of July outfits while we still could and take him out. Monday is the Fourth. Our neighborhood has a parade we wanted to take him to. Every day spent hear means one less experience outside of the hospital.

James himself appears to be getting increasingly angry at the hospital. He screams at nurses. He won't let them touch his hands- he's afraid they'll stick him again. He closes his eyes tight at all of us when things go wrong, as if when he opens them again we'll go away. I don't blame him. One of the most frustrating things is that we can't tell him why. We can't explain to him what's going on, or comfort him with reasons. He just knows he's sick, and we watch while people hurt him.

Despite everything though, James continues to be a source of joy to us. One thing that has improved since his surgery is his ability to make noises at us. He's stringing together letters and "words" like he never did before. I think we've heard "ma-ma" and "da-da" several times, though it's hard to tell if he means anything by it other than noise. Still, it's good to see him developing in some ways- and when we can get him to laugh and play, he's such a wonderful baby. We're hoping as soon as we get this one last complication taken care of, James will get back to his normal self again. Our prayer is that no matter what the future holds, nothing about James' self will change. We pray that he will always be at heart the happy, playful boy he always has been. I know that even now his natural disposition helps him weather this experience as well as can be expected. We pray that his treatment will involve a minimal amount of radiation- radiation can damage his mental capacity. We pray above all for healing.

I've gone home for the evening- but only after securing a concession from Kara that if we're in the hospital tomorrow, she's spending the night at home. My original proposal that she spent the night at home was rejected- Kara won on the grounds that her breasts produce milk and mine do not. An effective argument, but I count getting her to agree to take tomorrow off as a victory. We're both hoping we don't have to do any more negotiating on nights in the hospital however because James will be able to come home.

As always, thank you for your thoughts and prayers. The comments, cards, and support we receive daily mean the world to 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.

Day Six

When I thought about the days that would be the longest, I always assumed that day would be yesterday, waiting on James to get out of his surgery and to know the results one way or the other. In a strange way though, today felt longer. Maybe because some of the adrenaline is beginning to fade and Kara and I are starting to remember that we're mortal. Maybe because we just didn't do much, and so the day crept by in anticipation of action- relatively minor actions- that just took much longer than we thought they would. We thought we'd make it back to the floor by midday, we didn't make it until 7:00.

Last night Kara got quite sick in the evening (food poisoning+ no sleep= violently ill) so I stayed up at the hospital alone with James. I'm glad she rested. In many ways, the evening routine in the PICU has become normal, expected even. Every now and then one of James' levels will spike. It's almost always nothing. After a few days I now know how to silence every alarm, though I'm still working on how to work the IV machine alarms. The silencer only buys you 2 minutes (the ones on the floor, where you can completely mute the alarms are SO MUCH better), so it's worthwhile to find a nurse in the meantime if it's serious. James came through the operation well and was on pain meds, so he woke up only briefly, once at my prompting, to eat some pedialyte which was the only thing he could have because he would be under general anesthesia later that day.

The morning routine starts somewhere between 6:00-7:00. The doctors begin to creep in to make their rounds, and the day nurses arrive along with the changing of the guard. We've become much more adept at medical lingo than we were before- "the floor" for non ICU. The "magnet" for an MRI machine. An "admit" your nurse is getting another patient and will be busy. "Give report" what they do on shift changes.

Our neurosurgeon arrived with his "groupies" as we call them, the assembly of some combination of PAs, residents, and fellows that follows behind him like a dutiful tail wherever he goes, rarely speaking and saving their questions for the walk between patient rooms. I'm glad their are so many of them. It means a doctor is never too far away.

Kara arrived back with a nice, huge, cup of coffee- (a Kara creation, venti mocha cocunut latte) and we started our day. Despite initially being scheduled for an MRI at 9, other emergencies meant that the MRI was postponed until 1:30. Although the wait did eat up a good chunk of our day, we were grateful that we were now capable of being bumped- we'd exited the critical stage in which James' condition required that he be given first priority. Similarly, for whatever reason our room at the PICU was a "special" room with positive pressure that was needed to treat another patient, so we had to move to another PICU room. As no less than three people came in to apologize for this, I got the distinct impression I was supposed to be mad about it. I was just glad we didn't need a special room. I like not being a first priority at the hospital.

That said, I can understand why some people would get mad frequently in situations like this. Yesterday when James was having his surgery I went up to the surgical waiting room to check (for the third time) if they had our contact information correct- all 4 possible numbers in descending order of priority. A man there was complaining to the staff that his entire family couldn't stay in that waiting area. The staff apologized and he demanded to speak to a "manager." While I thought that was a bad approach all things considered- a waiting room is not a restaurant- I understood where he was coming from. There's no control when your child's in the OR or that sick. But you can control where you sit and who you sit with- or at least you'd like to. There are a lot of things I could get mad about. But I choose not to. My anger will not help my son unless I'm angry for him, not for me. In any event, in my experience the staff has been fantastic- little things, like taking a lock of James' hair during the surgery and giving it to us as his first "hair cut" (he's actually already had one) go a long way.

The new PICU room had a gorgeous view of downtown Dallas, far and away the best view we've had so far. I know it's silly to keep track, but it's something to pass the time. The wait for James' MRI kept getting longer- building anticipation. Though we knew the surgery went well there's that nagging need for closure- we wanted to remove the possibility of any more immediate surgeries from our future as soon as possible.

Finally, we received the go ahead for the MRI and met our fourth anesthesiologist so far. It seems strange that a procedure which shook us a few days ago- we were terrified of James going under anesthesia for the first time, now seems tame, almost routine. I don't know that we're used to it or that we ever will be, but we're certainly starting to appreciate relative scale of each procedure, and adjust our concern level accordingly. Ironically, I recall that there was a real question back in April about whether the "risk" of the CT scan were worthwhile given his fall. We're well past worrying about the risk of CT scans- and as Kara said, it's a real blessing that we got that scan so that our doctors now have a baseline to compare James' scan from last week to.

After the MRI we returned to the PICU and waited our the results so that we could receive the orders to move down to the floor. This wait was hardest, though again, the fact that there didn't appear to be a need for him to speak with us immediately can only be perceived as a positive- if he had things more important to do, that meant our son wasn't having another surgery today to remove missed tumor. I finally got bored enough to turn on the TV in the room. Strangely, even though we've had a TV in every room we've been in I'd never turned one on. In a weird way, there had just never been enough down time. We had the chance to meet one of our nurses from a few nights before again. She told us about a camp she ran for children like James who had brain tumors- 220 kids every summer, many of them who had their tumors as young as James and couldn't remember a thing. It was great to hear about so many success stories, all of these little messages lift our spirits and to envision a normal, happy, and of course healthy future for James. This nurse was kind enough to page our surgeon for us, who gave us the results which Kara already described below in some detail. To summarize, good news. The tumor is 95% gone (no one ever expected them to get all of it and we knew they wouldn't) there will hopefully not be a need for more surgery.

Following the results we were fortunately able to quickly move back to the floor and get settled in there, where Kara demanded that I go home for the evening. It was difficult to leave, to let go of the illusion that James somehow needed me there to take care of him. But Kara, as she often is, is right. James needs us rested to take care of him, we're useless to him exhausted and falling asleep in rocking chairs as I did earlier today. So now I'm home and Kara's spending the night with James. I took my first shower out of the hospital since Wednesday morning. I laid in a bed larger than my college dorm bed. I got in bed at 9:00, but was still too keyed up to sleep although I'm exhausted so I wrote this post in bits and pieces.

I cannot thank all of you enough for your thoughts and prayers for James, Kara, and our family. Your support has been overwhelming in just the right way- I am amazed by how many different people from all stages and parts of our life have reached out to us in this time and helped us. We could not function without your support.

Here is a picture of James from about a month ago- he is playing and happy. He likes to throw the parts of this toy when he tires of eating them. I pray that soon we will take many more pictures just like this, normal in every way.

How the Heck we got here

(James at 2 weeks old :) )

Wow. To say the least, when I think back on the last few days I am overwhelmed. Sometimes I don't even know how we got here. When every new doctor or nurse comes into the picture, they all ask us to start at the very beginning and describe James' birth. So I guess that would be the most appropriate place to start.

I went into labor a little after midnight on October 29, 2010. My water broke at home about 2 and half hours after my first contractions started. Matthew and I headed to the hospital after calling our OB, where the resident on duty told me that I was not in labor, nor had my water broken. It took several hours to convince her that I was actually in labor. After all, James was 6 days late (and I was totally counting!) and if I wasn't in labor then I sure as heck needed to be. My contractions were lasting about 6 minutes long (yes, I'm not joking) and James began making D-cells and his heart rate would drop from 150-160 down to about 60 bpm. About 20 people ran into the room at this point, told me I was having a c-section NOW and that I didn't have a choice. (I had planned on a natural delivery with no meds- HA! get the epidural people, it's good stuff!). James ended up being sunny side up (with his face up instead of down) and had the cord wrapped around his neck several times. Thank the Lord for a wonderful Dr, Dr. Joseph, who brought James safely into the world. I moved to Dallas 5 months pregnant and came to Dr. Joseph halfway through my pregnancy. Matthew and I had interviewed several different doctors but really felt like Dr. Joseph was who we needed to have. In retrospect, that is one of the best decisions I have ever made.

So when James was born, he weighed 8 lbs 1 oz and was in the 50-60th percentile for weight and height, and in the 15th percentile for head circumference. We were fine with this, and the doctors assured us that even though his head was small, it would grow and be fine. Matthew's family has large heads (most of them can't even wear adjustable baseball caps!) so we just assumed James had been handed my genes on that one. James is my mini-me in almost every way, so that made sense.

I don't have all of his stats and percentiles on me, but over the next few months his head began to grow larger in the percentiles while his weight and length decreased. At his 4 month check-up his head circumference was up to the 40th percentile. At 6 months it had jumped to 95th. I asked about this at the appointment but I was assured that mis-measuring by a fraction of an inch could be a huge change in the percentile. They were sure his head was growing, and was fine. His check up was sometime in early May (again, I don't have the date on me).

One night in early April, my brother and I were cooking out. I was inside and about to take some rolls out of the oven. I grabbed the Bumbo chair and put it on the counter to set James in while I grabbed the rolls out of the oven. I turned around for 2 seconds to take them out, and James wiggled out of the Bumbo and fell from the counter to the hard tile floor. I immediately screamed, picked him up, checked to see if he was breathing, and then called the Pediatrician. Our Ped's office has great hours- 8:30 a.m. to 9:00 p.m. M-F and Sat mornings. Thank the Lord that they were there. They told me to bring him in to be checked out just as a precaution. On the way to the Dr. James began throwing up in the car. By the time I made it to the office, he had thrown up twice. The Dr. on call checked him out, and watched him for an hour to make sure he didn't have a head injury. She said that if we got home and he threw up again to take him to Children's Hospital to have a CT scan. James and I had been home about an hour and he threw up again. We immediately drove to Children's and got a CT scan. Several hours later, the CT scan came back and showed no damage whatsoever. They said he might have a mild concussion, but they were sure he would be perfectly fine.

So approximately one month after the fall, James' head had doubled in percentage size.

On Tuesday, June 14th, James woke up and he nursed like usual. A few minutes after nursing he threw up everything he ate. I thought that he might just have some drainage or a bug as he and I had been at Vacation Bible School the day before. He threw up one more time that afternoon, and really just wanted to spend the day laying on my chest. I thought that maybe I had eaten something that upset his stomach (he's still breastfed) and that once it got out of my system he would be fine.

The next day, Wednesday, June 15th James woke up perfectly fine. We went to VBS and then when we got up he threw up again. He had no temperature- and seemed ok afterwards. He is getting 2 top teeth in so then I thought maybe he was just teething and that was making him sick. I gave him some tylenol and that seemed to help.

Thursday, June 16th James woke up fine again. We went to VBS and then I had an appointment right afterwards. James projectile vomitted about 20 minutes into the appointment. I left and came home where he threw-up 3 more times. I called the Dr. and they made us an appointment for an hour later that night. We saw one of the Peds on call, and he said it was probably a summer bug that had been going around. He said that it would last 3-5 days and we were likely on day 3. We just needed to keep him hydrated and it would pass.

Friday, June 17th James threw up 7 times. I tried to give him apple juice, pedialyte, milk, anything I could think of but he wouldn't keep anything down.

Saturday, June 18th I called the Dr. at 8:30 when they began taking phone calls. They said to come in at 9:30 and see the Dr. on call. We saw that Dr who said that James was dehydrated and needed fluids. They sent us to Medical City Hospital where James received IV fluids and zofran to keep him from throwing up. He seemed to perk up after he was hydrated and were were sent home a few hours later with a prescription for zofran that would last through Sunday. They also confirmed the diagnosis that he had a summer-time virus, although we did not see a doctor until we were discharged.

Sunday, June 19th James threw up once, but kept everything else down. He was incredibly lethargic and only wanted to be laying on my chest asleep. None of his toys interested him, and he was starting to have a little trouble standing when I stood him on my lap which he normally loves to do.

Monday, June 20th we had run out of zofran and James began throwing everything up again. I called the Ped. again, and we saw her Monday morning. She confirmed that he had a summer-time bug, and that the reason he wasn't "doing his tricks" like standing was because he didn't feel well. She said to give him pedialyte to keep him hydrated.

Tuesday, June 21st James was throwing up still. He hadn't had a wet diaper in about 6 hours, so I called the Dr. office. The nurse called back and said to syringe-feed James pedialyte and see if he could keep that down. I gave him a teaspoon of pedialyte every 5 minutes for several hours which finally did the trick. He seemed hydrated, so she said just to keep doing that.

Wednesday, June 22nd James was still throwing up and he had only pedialyte in his system. I called the nurse again, and she said to come in to the office. Our Ped. said that although he wasn't fully dehydrated, we should go to Children's Hospital and get some fluids. They would also run a few tests to see if we're just missing something. She called ahead and got us a bed so we could skip the emergency room.

James and I left straight to go to Children's, and Matthew met us there. I think he started his time-table at this point. The resident on duty immediately noticed a few signs that were worrisome. James' eyes were sunsetting, which means that they can't look up at you and drift downwards. They also noticed that his head was abnormally large and he was having trouble holding it up. They said we needed a CT scan, and thankfully, could compare this current CT scan with the one that he had in April when he fell.

It's so amazing to me how God works. When James fell in April, I was a wreck. I had so much guilt for putting him in that silly Bumbo seat. I kept re-playing it over and over in my head, always asking myself why on earth would I put him in that so high up? What was I thinking? For months I have had the image of him falling and me not getting there quick enough in my head. It's made me doubt my abilities as a mother. But now, that CT scan is proving to be a critical piece in James' future. Because they can compare his current CT to the one in April, we know how aggressive this tumor is. We know that as of April, there was no mass in James' head. That's how the doctors already know how aggressive this tumor is, which likely makes it cancerous. The odds of James having that first CT scan to compare are so unrealistic.

When the resident mentioned that James might have hydrocephalus, I began feeling that guilt all over again. It was possible that an obstruction could have been caused when James fell, and that would have created the excess water. Can I tell you that I would trade anything to have that be the case now? How I desperately wish that it was only an obstruction- because an obstruction is treatable in the sense that once they remove it, everything goes back to normal for James.

Today I said that I feel like my world completely stopped three days ago. But for some reason, the rest of the world didn't. News is still news. Everyone else's lives go on. But for our family, our world as we once knew it is somewhere so far away. I typically plan everything out. I make grocery lists for the entire week and have specific days that I do specific laundry. I make play dates centered around nap times. I used to be an event planner. One upon a time I did. That seems like a million years ago now. Now, my only plan right now is to get to Monday. After Monday I will worry about Tuesday. And so on.

I truly believe that in life, we are all given the opportunity to make choices. I didn't choose this for James. Whether God did or not is a debate I'm not going to get into. The one thing about this entire process that I get to choose is my attitude. So I choose to have the attitude that God is the Great Healer. He knows and loves James more than I can fathom. I choose to believe that. I choose to believe that James should be surrounded with a positive attitude, that all things are possible. That's why I implemented the "no crying" rule in his room. It doesn't mean that we don't get to cry. It's a grieving process. And Lord knows I cry. But I completely trust the wonderful Doctors and Nurses that are going to be operating on my precious boy. Once again, its a choice though.

As Matthew said, we are choosing not to know about percentages, odds, etc. During this time, I am choosing to only focus on things that are helpful. Knowing these things aren't helpful for me, so I just won't know them. It doesn't matter what happens 99% of the time. It only matters what happens in this case.

I am overwhelmed and humbled my the outpouring of love you have all shown for my sweet baby boy. I can't tell you how much every words means to us. I will forever be indebted to you, sweet ones, who lift me up more than I could ever imagine. Please know that I read every single word you write and they bless me in an intangible way. Your incredible faith sustains and strengthens us. Thank you for praying for James. Thank you for praying for Matthew and I. Thank you for praying for our families, and the Doctors and the Nurses. We feel your prayers, and we are so grateful that you are walking alongside us on this journey.

Thank you for being our friends, whether we know you in real life or not. Thank you for loving our sweet baby James, who is the absolute light of our world.

Day Three

Here's a picture of Jamesie today. You can interpret this picture many ways, but I choose to interpret it as James' message to the tumor that he will chew it up, spit it out, and then drool on it like a Sophie. He's been much more himself today and he's sitting up well again and playing. He loves playing peek a boo with his hospital bed, he thinks it's the funniest thing ever. We are so glad that so far nothing that has happened has dampened his spirit- he's the same happy boy as ever.

I suppose I should have mentioned that Day One actually constituted two days. The days blend together when they happen all at once.

Today felt like the first day in a long time where nothing happened. No tests. No procedures. No urgency. We're in a strange state of limbo, with all the important things lingering on the horizon, the one two three of our first few days broken up by the weekend. The Doctors wanted to wait to do the surgery until Monday so that they could get the right team in place to perform the operation. I'm glad. We don't want people coming in at odd hours over the weekend to perform the most important procedure in James' fight against the tumor. We want them fresh, rested, and fully focused on our son's care. If I saw a hungover nurse anywhere near my son, the results would be unpleasant at best, and aggravated assault at worst. We're glad they're putting together a team to work on James.

Although at a slower pace, a couple of important things did happen today. First, we moved from the PICU to the neurosurgery floor. One of the great things about Children's is the level of specialization available in a hospital like this which focuses exclusively on children's care. They have an entire floor devoted to children with neurological problems requiring surgical intervention like James. Even in the PICU, the subsection of the PICU we were in focuses exclusively on neurological conditions. This means that everyone you see has seen something like this before, as people all around the country are here dealing with the same kind of problems. We are extremely blessed that it happens to be in our backyard. General practitioners simply don't see this thing very often. Our pediatrician visited us today and told us that in all of her 27 years of practice she has only had two cases of children with brain tumors- including James. I was glad to hear that the first case is now over twenty years old. Small things like that are a great comfort. The advantage of the "floor" as they call it is that we have our own bathroom (no more community showers a la freshman year at Baylor), the nurses bother James much less, the instruments are less intrusive (they mute the monitors, thank God) and that more people can visit us. We can also eat and drink here, which is nice.

The other important development today is that we discussed James' surgery with the surgeon today. He was very patient and answered all of our questions. Sadly, he wore no tie. I've come to expect magnificent ties. He used a model to show us how they will go in through the back of James' head to get at his tumor (and will not remove all of his gorgeous hair!), which rests between his cerebellum and his brain stem. They will determine the composition of the tumor and remove it by a combination of suction and incision as necessary. They will get as much as they can. Kara and I have decided not to look up the percentages on the procedure. Google is forbidden. There's no sense in knowing. I am not interested in odds. I'm only interested in James. He has to have the surgery, and we'll go from there. It's in God's hands.

The day felt a little more normal, as much as anything can be. We had a lot of visitors, all of whom loved on James, which is great. Visitors are nice, though at times it can be a bit exhausting going through the story over and over. Hence the blog, I suppose. Writing it is strangely therapeutic.. Kara displays a much higher level of grace than I do, though that's not surprising. I am amazed constantly by the amazing level of support we've received, from all corners. Someone from the church has come to pray with us everyday, and we've received meals, flowers, shower caddies, drinks, a pantry's worth of snacks, and more and more than I can remember. We appreciate everything, and we could not function nearly as well without your support.

After Monday, more pathology on the tumor will enable us to make a plan going forward with the oncologist. Again demonstrating the incredible level of specialization here, there is a pediatric oncologist who specializes in brain tumors. Our pediatrician thinks he will be in-patient here for several weeks. Kara's working on a post summarizing how we got here. It's been a long journey.