Review

Here's James in his late-period mohawk stage. Very punk. It took months for his hair to get long enough that it laid down on its own.

So I'm going to try something new.

As I've mentioned before, writing in this blog has been cathartic for me. For a lot of different reasons, I'm not big on "sharing." As the quotes indicate, the whole idea is more of a concept than a practice for me. I'm the sort of person who would prefer to give a speech to a room full of hundreds of people than engage in a one on one conversation with another person about my feelings. Presented with the opportunity to talk about my feelings, my natural inclination is not to say a word or better yet to change the subject. I will do almost anything to avoid these kinds of conversation. This is not a strategy I recommend. It is simply my default strategy. I'm in recovery.

If Kara had not started this blog, it is entirely possible that outside of a few clipped and evasive conversations, I never would have said anything to anyone about this. I would have taken it all and kept it to myself, hoped to drown in it some activity or just to wait patiently until people stopped offering to talk about it. I am extremely glad that I didn't do that. Trying to contain something like this cannot work. The substance of the trauma is too corrosive, bottled up it inevitable seeps out of the container and contaminates everything. While I've had my share of setbacks in life, nothing I have experienced before even begins to rise to this level. Losing James permanently altered the fabric of my life in ways I'm still coming to terms with. Changes necessitate new strategies and in my case the shift in strategy has been for the best.

Throughout it all though, this blog has been an important forum. Despite my natural inclination, it's been very helpful to have somewhere to talk about everything, even if talking takes the form of venting, complaining, or rambling.

One thing I've often regretted is that I have not thanked you all for your patience and your support individually. So I'm going to try something new. I'm going to go back to the back to the beginning of this blog and try to respond to your comments. Over the course of the last few months they've meant a lot to me, and it seems appropriate that I respond to some of them. So we're going to give that a shot. This will also give me the opportunity to review what happened. I have not gone over those posts. Often I didn't even read them myself before Kara or I published them. Sometimes I just can't go back there. Thank you for keeping us in your thoughts and prayers.

Days

Below is something I wrote the Day after James' funeral. I still keep a journal, and this is what I wrote that day. I was looking over it tonight and one line struck me. Back then, almost four months ago, I wrote that I didn't have a time table. When I read that tonight I started to wonder if that was changing, if in the intervening months I'd decided that there was a time I was going to allot to this, the same way I might schedule a meeting or plan a budget to buy a new car. I've always found a certain degree of comfort in schedules. I like to know when and where I can expect to deal with something and prepare myself accordingly. When I read this tonight it struck me that I still, after all this time, have no timetable. I can't even schedule when or how I think of James, whether it's smiling when I stumble upon a giraffe walking stick we got from the zoo, or freezing when I open my trunk and see the base of his car seat still there. For some reason I was fine taking it out of the backseat but couldn't bear to take it out of the trunk. So now I just don't use the trunk. I don't even have a timetable for when I'm taking that out, let alone when I'm going to deal with everything else.

What I am beginning to realize is that perhaps this never ends. Perhaps I'm not going to "get over it." Perhaps I'll just live with it and manage it. I don't necessarily mean that in the sense that I will lead the rest of my life morbidly depressed, but in that James and his loss are never going to fit into a neat, compartmentalized box in my life. There is never going to be a file I can index and store for this, it's always going to be there, the good and the bad. I've come to believe this isn't necessarily a bad thing. James was an amazing gift, and it was the highest privilege I have ever known to be his father. I don't want a timetable for getting past that.

The picture is a James "self-portrait" I handed him my phone with the camera on and let him play with it. He took a few select shots of himself on accident and this was one of them- he's trying to put the phone as close as he can get it so that he can get at the baby in the picture. I loved watching him do that, and I like to remember things like that, the way he played, his objectives. I don't want to forget those things.

Thank all of you for your continued support and prayers. It's been very comforting over the last few months to hear from all of you.

Day Twenty Nine

Today marks either the first day of the rest of my life or the last day of the best part of my life. I suppose it's a question of perspective. After James' service yesterday, family has slowly migrated home, back to their jobs and their lives. Friends have faded, though still supportive, the sense of urgency fades. James is buried, commended to the earth and claimed in faith. All that remains from now on is what we do with ourselves. We are left to grieve, to mourn, and to recover as best we can.

I wish I could say that I spent the first day of this new period well, meditating on James life or reflecting positively in some way. God knows I would have liked to. Instead, I did virtually nothing all day. I woke. I dressed. I showered. Each act took too long, a little more time than you might expect. Forty minutes to get out bed. 20 for the shower and getting dressed. Pauses were long, and frankly I completely lost track of time on several occasions. Focus comes irregularly, and all too often sharp on the wrong images. The background picture on my phone. The cluster of toys on the hearth, still unmoved. We haven't gone through anything yet.

I went to dinner with a friend I'd scheduled yesterday. Thai food, drunken noodles with a touch of spice but nothing overwhelming. If I hadn't scheduled the dinner yesterday I seriously doubt I would've done anything at all today. And maybe that's ok. Maybe there is no time table for what I'm doing here, maybe there's no way this ought to look. Kara and I both love schedules, exact timetables we can rely on and trust completely. I am obscenely punctual. But we can't schedule this. And so I lose days in the cemetery, days I never even knew were there. It's humbling, and incredibly enlightening at the same time.

Time

James lived eight months and seventeen days. That's 257 days. Today marks the one hundred eighth day since we were first admitted to children's. It is seventy seven days since he died. Life in the hospital was very brief relative to either of those periods, James spent just about twenty nights in the hospital between the time he first became ill and when he died, tucked into different floors and different rooms. A dizzying array of B6, C9, C11, PICU, C9, C10, PICU again. Tense days full of hurry up and wait, ventured opinions and slowly forming conclusions.

Sometimes, I still dream about it. I wonder if you would call them nightmares. It is the morning and I can't get James to wake up. I am begging for him to wake up, shaking him, calling his name, calling for help. No one comes. I go into the hall and make laps around the circuit. The nurse stations are empty, the on-call boards blank, without any of the cheerful flowers the nurses would draw. A mural welcomes you to the floor on each lap, splashes of color to break up the hospital's familiar pattern. Each floor has its own mural- the layout remains the same. No one is there, and a panic rises in me. I wake up, and still there is no one to help James.

The days pass with a different cadence now. When I make an appointment, I can be confident it will happen about when expected. There is a certainty that was never present in the hospital. The days are more regular and less varied. There is more predictability, but the surprises gone are about half and half. Bad surprises,like your son has cancer and needs an MRI today, are largely gone. The worst has already happen, there are no more horrible futures to contemplate. With them go good surprises too. Which of his teeth will come in next, what will his first word be? When will he walk? The watch for milestones ceases. There is simply much less to look forward to.

The days now have a regular, predictable quality. There is much less to update, and still less that is actually interesting. As much time as we spent terrified in the hospital, I still sometimes miss it. We still had hope. We still had things to look forward to with him. By its nature, the hospital is a place that suggests you still have options, treatments, hope. There is the opportunity for life however tenuous one diagnosis or another might make it. Away from there, here, is in many respects an admission that there is simply nothing left to be done. James is gone, and there's no hope of return in this life. I never thought much of heaven before. It seemed abstract to me, a reward without context. I still don't know much about it, but I know what I want out of it- James. I want to see my son again, and watch him grow into the man I'd hoped he would become. I now have context. There is hope in that, but an abstract sort, the kind that pales in comparison to the reality of you dead son's grave, or the crib sheets you wonder if you should bother changing, because of the dust that's gathering.

Today looked a lot like yesterday. Work, sleep, leisure crammed in the margins where possible. Tomorrow will look much the same. The days are more numerous but less important. I think of all the things I wrote in those daily updates, everything that happened. Some days I would write an entire update only to forget a full chunk of the day, hours and events that were sometimes the most important thing that happened. That time is compressed in my mind, a month that felt like a year. There is a huge divide in my life between before and after, and I cannot believe it. A few days after James died I remember I received a calendar reminder for some discovery deadlines for discovery I served a few days before James got sick. I remember looking at the note on my phone and just being shocked that 30 days ago my life was normal like that, and that 30 days later I was finished burying my son. It felt like much longer.

Some days are better than others. Some days I see the positives. The time we were blessed to spend with James, how honored we were to be his parents. He was our perfect blessing and we were lucky to have even eight months with him. Some days I am angry. Other days, I'm just trying to get through the day. Today was a good day. I found a set of James' newborn pictures in my desk. These discoveries are always a bit sad, but I like to look at his pictures and see him smile. He was such a happy boy. I couldn't have asked for anything more.

Thank all of you for your thoughts and prayers.

Just keep Swimming...

For me, things are suddenly coming in to focus in random spurts.  I don't know how else to describe it, but it's like most of the days spent in the hospital are a blur.  I couldn't tell you what happened any day, other than that it started and ended.  I haven't gone back to read what we wrote on those days- I just can't yet.  But now at times, the blurred days came strikingly into focus.  It's almost like a scene in a movie I'm watching, and I can see myself and James and the doctors and whoever else was in the room with such precision. 

For example, I was driving the other day and for some reason the moment that the Neurosurgery PA came into our room and told us that it was possible that James had a brain tumor popped into my head.  At the time, I had no idea who this woman was or why she was in the room.  I had no idea that she was with the neurosurgery team, or that was a PA, or what her role was at all in the hospital.  I had no idea that she didn't belong on B6 which is the first floor we started on.  She had really belonged on C9, and that her being in our room signaled a drastic change in why we were in the hospital. 

I had no idea about the relationship I was about to develop with her.  I had no idea that she and I would at times disagree on James' treatment, or what procedures he was going to have.  But watching this scene play out, it was like I knew all of this information in the moment.  So watching it again, knowing the full effects of what was going to happen, somehow makes it so much more tragic.

I guess maybe in some ways it's like the part in Harry Potter where the old wizard (Dumbledore?  Is that his name?  Can't remember.) pulls the memory out with a stick and places it into the water-like substance that collects all the memories. 

And then all of a sudden, the memory fades.  Logically I know that very quickly after our conversation we were moved to the neuro floor.  I know that they began monitoring Jamesie's heartrate and since it was so irregular that we moved up to the PICU even faster.  And then later I remember our nurse, Simon, who took care of James almost every night in the PICU.  I remember that the lights were turned all the way on, and even though it was so late at night. They were so bright. 

Yesterday I went back up to Children's.  I wanted to donate some basic toiletry items that I had collected to give to the social worker who was so wonderful to us.  (FYI- those tiny bottles of shampoo and things that you get in hotels are amazing for hospital stays.  They are small enough that they last for a few days and you can toss so you don't have to tote them around forever during your stay.  I've begun collecting them whenever I'm in a hotel to donate back to the hospital.  Little things like that make a HUGE difference when you come with literally just the clothes on your back and don't really anticipate making the hospital your home for the next month). 

I also went to the child-life department to see if they could help me understand how to get my baby's footprints out of this mold.  They helped, so that was good.  It was so surreal being back there.  People asked if I needed help finding my out.  It was almost funny because that hospital was my home for a month.  It's amazing how quickly it all comes back.  Of course I can find my way around. 

Our sweet social worker, Kelly, offered to page my favorite PICU doctor.  I heard that he was doing research, so I didn't get to see him, but maybe next time.  For some reason I have my favorites- which is terrible I know- but I just truly loved the doctors and nurses in the PICU.  I definitely had my fair share of little battles with them, but I know that they have to desperately love what they do.  They make such a difference.  Maybe I'll become a PICU doctor one day.  Who knows.

I also went by the hospice office yesterday to pick up a hand and foot mold they had done for James.  I don't know why, but yesterday I got a little obsessed about having those molds.  I know they are a little weird, but for some reason I just had to have them yesterday.  In some ways I have stopped questioning my random spurts of energy.  I think they are little moments when I am trying to gain some sort of control over my life.  Or maybe they aren't. Maybe I psychoanalyze myself a little too much! :)

Oh- and I donated all the baby bottles yesterday too.  Whew, I guess it was a weirdly productive day.  I took them to a woman's shelter.  I have no idea if they will use them or not.  I had no idea where else to take them.  They aren't technically "new" because each of them had been tried a grand total of once in my efforts to get James to take a bottle.  I think I owned about 3 bottles of every type on the market.  It was a huge bag. 

I never have any idea what to label these posts.  For some odd reason, the tune "Just keep swimming" that Dori sings to Nemo in Finding Nemo just came into my head.  Maybe that's what the days are right now...Just keep swimming.  Just keep swimming, swimming, swimming. 

Forward momentum is always good, right?!

Day Twenty Eight

Twenty eight days ago, James was alive and well, suffering a persistent summer bug. 4 weeks, less than one month. Today we buried him and celebrated his life in memorial. In that period, I have learned the word rhabdoid, brushed up on anatomy, and taken a crash course in neurosurgery. All in less than the time that it once took to get through half a quarter of law school. Holidays came and went, days of the week, once so important, faded into inconsequential 24 hour cycles as everything, everything became regulated by James' health. We ceased to note the passing of the weeks, even the season came as a surprise. I suppose today was meant to end that, that we gather before a hole in the ground and in a church with friends and family to say goodbye. The process is not nearly so neat however.

Today felt surreal. Early to the funeral home, a brief visitation with a body that was a poor imitation of my son but which nevertheless moved me to tears. We buried him with his Sophie giraffe, his giraffe blanket taking the place of the lining of the coffin. His giraffe rattle and pacifier, and finally the first and last book we read him- "On the Night You Were Born" with the simple message that was always so true for James, that you are the one and only ever special you. We read it to him in the hospital the night we met him, and we read it to him the morning of the day we said goodbye. The cemetery service was intimate and dignified, our family sharing freely about James and his enduring legacy in each of us while the minister ably returned him to the soil. Dust to dust, ashes to ashes.

The time between the burial service and the memorial service passed quickly and in a daze, as though we still could not quite believe the first had happened and that the second would follow. I wrote something to say at the service, and Kara slept. I wrote it out longhand, which forced transcription onto the ipad. My handwriting remains atrocious, no matter what the circumstance. I don't think either of us quite came to believe it was real until we were standing there, in a sanctuary filled with people gathered to mourn James, canvas pictures of him a few feet away from us.

The service itself captured what we wanted it to- a positive, affirming testament to James life and a celebration of the time we had with
him rather than a mourning the time we will not have. The ministers ably coached our words from this blog and the scripture into a coherent whole, a task complicated by the complete randomness with which we chose that scripture, verses and chapters drifting into our minds while we sat with the minister. Like so many other things, we committed quickly and without thinking- we had no time for anything else. Kara and I both spoke, Kara thanked everyone for their support, and I mumbled a few things about James, the only subject it seems I'm fit to speak on recently.

Afterwards, the foundations class hosted a terrific reception complete with no less than 100 dozen cookies, brownies, and treats I ate whose names I simply do not know. We were overwhelmed by the number of people who attended, and by the outpouring of love and support for us and for James. Thank all of you, though we'd never admit it, I think both of us worried we'd have an empty room. It was deeply gratifying to see so many people there, all of whom had lives that had not been operating at stop for four weeks, celebrate our son. We cannot thank the church and the class enough for putting all of this together for us. We are deeply humbled.

Afterwards we returned home. I have no idea what happens next.

Thank all of you for your continued prayers and support, and thank all of you who took the time to come. I keep expecting a punctuation mark on this journey, some signal that a chapter is closed and we should move in to the next. I have yet to find it. Below are the words Kara
and I spoke today.

My part:
We knew a lot about James. We knew his smile and the easy, always welcome sound of his
laughter. We knew of his preference for pears though never before mommy milk. We knew how effortlessly and continually joyful he was. Always eager to play, and eager to make new a acquaintances.

When taking his last photo shoot the photographer asked us if he had any favorite toys that might make him smile. We didn't really know what to say. He wasn't big on toys, he was big on you, big on interaction and play. No thing or object in particular moved him- he just wanted people. If they wanted to play with toys, fine. James just wanted to play with them. He liked to experience the unexpected from them- a silly face or the swish of a ponytail. Even in the hospital the surest way to calm him down was to take a walk with him in the stroller or on your shoulder.

With so many new things to take in he couldn't remember to be mad- and he wasn't really good at staying Mad anyway, it just wasn't his gift. He definitely didn't get that from me. There are many things though we will never know about James. We will never know his favorite movies, cars, pizza, color, if he was right handed, left handed, or simply ambidextrous. We lost James before he could tell us all of that- and I believe he would have let us know very loudly. He was anything but subtle.

Even though we will never know so much, even though so many hopes and dreams will never translate into memory, We can still know a lot about James. We can know the perfect love that surrounded him always. We can know how desperately we wanted him. We can know how blessed we were by him, our once and future angel. We can live each day with the same joy and the same boundless, eager love. We will miss James horribly and constantly. But we will not ever have to forget him. We can always know him, and visit from time to time that warm space he occupies in our hearts. We can wait in eager anticipation of the day when we will see him again and bask in the warmth of his smile. And we will, we always will.

Goodbye son, we love you. Always. We will see you soon.

Kara:

Day Twenty Seven

When I picked out a picture to pair with this post tonight, it occurred to me that eventually I will run out of pictures. Eventually I will have seen every picture of James, have used every image in one way or another. Because James is gone, a finite number of pictures exists. The supply is limited, and it cannot be replenished. I wonder what happens when we run out. I wonder what he would have looked like in a month. The shock of dark brown hair he was born with was slowly being replaced with new, blond hair, a concession to me as in every other way he was identical to his mother. His mother's nose, his mother's lips, and cheeks. Even his eyes were closer to her shade of blue than mine. He had my short, stubby legs though. Poor boy. I was always pleased he looked like Kara. The hope was he inherited her personality as well.

We took different paths today. I went passive and Kara went aggressive. I went asleep last night and slept for nearly eleven hours, and did not want to wake up. Kara slept not at all and attacked the day early and often, calling and setting up James' fund, attending to flowers (we're only doing flowers for the casket spray- no others), and dropping off James' clothes at the funeral home. We decided to bury him in a polo shirt, shorts, and puppy shoes. We didn't want somber clothes. James was never somber. Kara bought the polo last summer, when she was pregnant with James. It matches one of mine she also bought. We matched a lot- even on one of his last days, he wore a seersucker set of overalls that matched my seersucker shorts. We'll send him on his way with a few giraffes as well.

We met with the minister and finalized plans for the service. We're hoping it will be upbeat, a tribute to a boy who hated naps and loved people. Kara will wear a giraffe print dress, while I will wear a jungle themed tie with giraffes and an orange shirt. Although we mourn James, we feel overwhelmingly that his life was joyful in every way, and should be celebrated as such. To mourn seems inappropriate. Even with three IV and a brain tumor, James wasn't big on mourning. Too boring.

To prove humor still exists, Ferragamo actually makes a giraffe print tie. I called or had someone call everywhere in Texas that would have this tie. I could not find it. The closest thing was a jungle print tie that includes giraffes at Neiman's. The tie was $170. This will instantly make it the nicest tie I own. I've bought whole suits for less than that. Without thinking, we also bought an orange shirt there. We just picked a random one. It looked nice, but you know, a shirt is a shirt. When we checked out, we got a little sticker shock. The shirt was $500. Brioni. Chastened, we purchased a similar, cheaper Ralph Lauren shirt at Dillard's and returned the Brioni shirt. Which just goes to show you that my father and I really have no business shopping off the rack at Neiman's. We laughed.

Often, Kara and I pass each other in our grief process. She'll be mad when I'm barely speaking, and vice versa. The process lacks any kind of structure. It's more a free form disaster. The stages feel more like moods. That is not to say we do not believe James is healed- that he beat the tumor. We do. But we miss his presence, just his being there. We miss his smile and his silliness- how much he loved to fly, he was a bit of a thrill seeker. Throw him up in the air and he'd cackle all the way down. He got that from me. I always expected one day I'd try to take him skydiving and Kara would arrange to have the plane destroyed the night before. We miss the future we never knew.

Very early tomorrow, we will bury James with our family, in a place I'd never been before Sunday and where Kara hadn't been in years. We will put him to rest and say goodbye. That afternoon, we celebrate his life. After that, I have nothing more to "do." We'll see what happens then.

Your continued support and prayers are deeply gratifying. If you can, please consider making a donation to James' fund. We certainly are. I think we'd rather do that than buy a few Brioni shirts. Rhabdoid tumors are a relatively new type of tumor- until recently they were misdiagnosed as another type of brain tumor, and Doctors were simply confused why some patients diagnosed with the other type of tumor did so poorly in comparison to others. In the words of our oncologist, they are "orphans" when it comes to research funding. Gains are being made. We hope to contribute to that.

Day Twenty Six

When Kara was pregnant with James, I wrote him everyday. Most days I curled up at the end of the day and wrote to him in a gmail document, snippets of of the day and of him. Some days I just jotted off notes on pieces of paper and added them in later. I told him what size fruit he was every week, what we were learning about him. I told him about all the fun things we were going to do together. We called him the bean before we knew him as James. We got the idea from his first ultrasound, when his beating heart surprised our Doctor. He was ahead of schedule- the boy was always precocious. I thought he was a girl. Kara knew better. When I wrote that, I wanted to give it to him one day, on a birthday or some other milestone. I wanted him to take it with him and know how we loved him totally from the time we first knew him, before we gave him a name or even knew what kind of name to give him. That I thought of him everyday.

Sometimes, I feel like I'm still writing that letter to him here, pausing each day to write. We just won't get a chance to talk about it, James and I. What I hope and pray is that I'll find another way to get that letter to him.

We are still doing. Doing this, doing that, doing anything but. We sprang awake this morning- late but eager- and began the day with a barrage of phone calls. Schedule time with the funeral home. Schedule a time at the cemetery. Call charities to explore options. We were in the car for the funeral home within an hour of waking up.

I wish I could say our funeral home experience went well. It did not. We arrived were handed off to a director in a back room. He fumbled immediately by spelling my name wrong on the death certificate, then following up by asking us what education level our eight month old son had attained. Why "less than eighth grade" wasn't simply checked is beyond me. We were not pleased. We couldn't look at caskets. They didn't have the baby ones there. We looked at a brochure, full of gingham monstrosities and designs which should never exist. He suggested a plastic one for $600. We were not amused. The whole catalog shouldn't exist. We selected the least offensive, poplar wood and not very baby. In our minds, James never seemed like just a baby. He was a whole person, with a personality and an identity apart from merely being an infant. He was James Camden Sikes, our son. He was not just our baby. After we selected, we were told we couldn't get it in until Thursday- after we'd scheduled James' service. The details were sketchy, we scrambled looking elsewhere, pitched a fit, I pulled the lawyer card and lo and behold, problem solved. We received a discount for our trouble. As if it mattered.

We then ventured out to the cemetery- the one in Denton where Kara has family. We'd liked it the most yesterday, and we felt good about it. The environment was totally different, in a much better way. No corporate offices (as one cemetery salesman told us, "This is the very best of our 600 cemeteries") just an old country woman behind a desk, with a map of spots. A fraction of the cost. We were shown a few spaces and finally chose a block of three by a newly planted tree where we could put a bench. We bought all three. James will take the middle spot. We'll follow. Once upon a time, we asked each other but never answered "Where would you want to be buried?" Now the answer is obvious and simple. "With James."

We went home and our families were over. We burned time sorting through decisions. Pallbearers. Clothes. Songs. Pictures. We did all of that and we managed not to deal with a lot. We ate. And here we are again, another day spent. We'll run out of decisions, plots to buy, and things to plan eventually. We'll have to deal with emptiness, with the lack of James. But not yet. Florist in the morning. Always something.

Thank all of you for your e-mails, comments and prayers. We are horrible at responding, but we read each one. We are truly grateful for the impact James has had on the world.

Day Twenty Five

At some point, I have to stop calling these daily updates. At some point, daily is not my situation with James. I do not see him everyday. I do not hear him everyday. I do not play with him everyday. Right now, he's at a funeral home somewhere. I don't even know where. The hospice people suggested a funeral home and I took it. I didn't have time to comparison shop. I thought we'd had the upcoming week to plan, to mobilize, and to prepare. But as with everything on this journey, things simply happened much more quickly than we ever anticipated. The oncologist were ok with starting chemo on Monday. We didn't even make it through the weekend. I suppose I'll write this day as I did the first day. In many ways, the day James got sick and today each mark the beginning of new chapters in my life.

8:30 A.M.: I wake up. Somehow, I'm surprised. Part of me always expected God to take me up on my offer to trade places with James. I lay in the bed staring at the ceiling for an hour. The patterns are more intricate than I remembered. I wonder about James' view from his crib- always lying flat on his back. At least he always started that way.

9:30 AM: I shower. I cannot get the smell of yesterday off of me, no matter how hard I scrub. It's in the pores.

10:00 AM: I make my way out to the living room. One of James' toys, his singing puppy, randomly goes off. We always called it the zombie puppy. Part of me wants to throw it against the wall. The other part wants to fall on the floor and cry.

10:30 AM: Kara and I form a vague plan to go and look at cemeteries. Neither of our families are from Dallas, and we need a place to bury our son. More importantly, we need something to do other than sit in the house and wait.

11:00 AM: We visit the first cemetery. It is surrounded by strip clubs and warehouses. They haven't mowed, and the artificial pond in the front is dry and sad. I am not burying my son here.

11:20 AM: The second cemetery. No fence, and I have to drive past a schoolyard filled with children playing soccer to get there. It shouldn't make a bad first impression but it does. It's more quaint, but too random. Not here, either.

11:50: The third cemetery. Still no fence or shrubs, placed in the middle of a subdivision in the suburbs- two cemeteries actually, one an outgrowth from the original. There is a baby's grave we pass. She was two years old. That seems like lifetime to me.

12:20: The fourth cemetery. Kara's cousin, who drowned at two and a half, is buried there. Her aunt, uncle, and grandparents will be. It is in the country, near Denton. The road to it reminds us of the roads we lived on in Waco- winding and country, horses and imposing houses squatted on two acre tracts surrounding it. It is quiet and calm, peaceful. It is, unlike so many others, a possibility. There is a babyland, just for babies. It's full. I cry just looking at the tiny monuments. We decide we want three plots, wherever we go. One for each of us.

1:45: We visit the Fifth Cemetery. The director/salesman wants to sell us a family plot for 200,000. At the very least, will we consider a flat, not upright, space for 9,950? There is a special on a 6-seater for 79,000. I want to throw him out of then back up over him on the tour.

2:30: Lunch with the family. Campisi's Dallas. I wonder if James would have liked Sicilian, Roman, or Neapolitan pizza. I have so many questions like that. I have no answers.

3:00: We meet with the minister to discuss James' service. They are immensely accommodating, as they have been throughout. We are truly blessed by their support- both during James illness and now. We discuss his service. I find it hard to participate meaningfully, trying to interject what I feel is appropriate, though I have no idea what that means.

4:00: The minister gave us the names of more cemeteries. We're off.

4:30: Cemetery six looks more like a park than anything else. A few benches here and there and garden signs- they all insist on calling them gardens, not graves- indicate that the dead reside here. I suppose it's an option.

5:00: A cemetery in uptown, old and mildly gothic. The kindly old man locking the gates informs us that plots will be given only to those with family already there, or those who can find two plot owners to vouch for them. What does it mean to vouch for a cemetery plot? I feel like I'm interviewing at some sort of bizarre coop board. The kindly old man feels bad for us. He gives us the name of someone to make it happen.

5:45: Cemetery number eight. It's like the combination of all of them- it's weird. Somewhere in the middle of them all. Which makes it not quite right for anything. The tour is a Buick LeSabre, just like the one my grandmother once drove. I wonder how she James, and my grandfather James are getting along.

6:30: Home again. I go to James' room and sit there for a long time. I have no idea what I am going to do here.

8:30: Dinner from Keller's. I should stop eating. I just need something to do.

And now I'm writing. I'm missing parts. I'm missing everything. I know James is fine now. He's healed, better, tossing balls at unsuspecting passerby and laughing when he gets a hit. I just miss the boy.

Thank all of you for your support. It has been tremendously affirming to see how James has touched the world. Your prayers are with us.

Day Twenty Four

I am not ok. I don't even know what ok looks like anymore. I don't remember what that even means. I'm just here. The world keeps moving but I do not. I keep breathing but everything is wrong. Everything is lacking. I keep expecting him to roll back into view, or crawl out from around the cabinet. The house seems too empty, too still.

I know he's better now. I know he finally beat the tumor, finally found peace. I am thankful it did not last long, that he did not have to endure months of treatment doomed to failure, that his illness struck him so quickly it took him before it could dampen his spirit. That he died at peace and in comfort. I am glad he died in our arms, surrounded by our love. I am glad I had the chance to tell him that over and over and over again before the end. We told him it was ok to go. I believe it was ok for him to go. I believe he heard us. I believe he knew how completely he was loved. I am not worried about James. James is fine, fine in a way I've never been. My little boy doesn't need grief, he doesn't need anything. He had all the love he could get.

So James is fine but we are not. We are left here with empty arms and damaged hearts, shadows of the people we were a month ago. There is much to take comfort in, and I do and will take comfort in many things- the profound impact James had on so many people among them. His happiness. How glad I am we were at home. But they cannot replace the part of my soul the rests with him. They cannot smile, laugh, and play peek a boo. They cannot be James.

There is much to do and we will do it. But for now it all seems impossible, even the smallest tasks feel that way. Everything is colored all wrong, everything is off center. The axis around which it all revolves is broken, ruined. I am trying, trying to keep moving. I suppose I will find a way. James did.

Thank all of you for everything, please keep us in your thoughts and prayers. Many of you have expressed a desire to give to charity on James' behalf, a desire we share. We will distribute information as soon as possible.

Day Twenty Three

Today James had his birthday party. He is 37 weeks old. As you can see the theme is appropriately giraffe. Jamesie the Giraffe demanded it. The party came together quickly. Long ago, i'd thought as James' birthday would fall on a Saturday, I'd do a tailgate themed party and watch the game. I wanted to show him all the different positions he could play, and encourage his athleticism. He gets that from his mother- I am aggressively uncoordinated. James never suffered from that, even as a two week old baby he rolled over, refusing to sleep on his back. We were so scared of SIDS and him somehow suffocating. That seems so silly now.

We had a cake from society bakery- a vanilla on vanilla cake with his name and a wonderful giraffe on it. Every time before now when I've called there to get a cake I've been told to wait a week. Today I got one the next day- sometimes, things do break James' way. The cake came out better than I expected, and was delicious on top of that.


Giraffe everything. Even a five and a half foot tall giraffe in the corner. His Uncle Tony cooked up squash and asparagus, while his Papa Jim and Uncle Patrick grilled steaks and chicken. Uncle Matt supervised and nursed a beer. James even tried some of his cake, washing it down with some mommy milk. He can barely swallow now, but he managed to get the icing down. Like so many things I once made a priority as a parent, offering vegetables before sweets is simply no longer on my radar.

When the day started, I did not believe we would have a party. James woke us up at 3:00 AM seizing, thrashing in his Moses basket in the slow, rhythmic writhing we've come to associate with his seizures. We waited five minutes as instructed and gave him Ativan. No effect. We waited another five minutes and gave another dose. Nothing. We called the hospice and gave another. The triage nurse returned our call and said the on-call nurse was on the way, and told us to give another dose of Ativan. We did. Nothing changed. The on-call nurse said she was 30 minutes away 30 minutes after we first called.

Panic ensued. We called Kara's Dad, a doctor, and started giving James phenobarbitol, his other seizure medication. He kept seizing, legs bicycling slowly- he barely has the energy to even seize properly anymore. Finally, the hospice nurse arrived. I'll be honest, if I didn't think my son was dying I would have throttled the woman. Used to working with adult patients, she seemed to have no idea what to do with us. Wide-eyed and confused, she kept saying over and over "I'm so sorry your son has a brain tumor." "If there's one thing I do not need from my medical professionals, it's cancer eyes. Especially when they think he's dying. If you can't help, get the hell out of my way. She literally asked "Do you think he's seizing because of the tumor?" Why yes, yes I do. She fumbled with the name of our oncologist. She couldn't get the spelling right to call. She finally managed to get a hold of the on-call oncology doctor. By this time I'd ordered her out of the room and we'd told Kara's Dad to do the actual talking with the doctors.

If she displayed mere incompetence, our third year resident friend actually managed to make things worse. When we told him what we'd given James, he informed us that he would rush James to the PICU immediately because that much ativan and phenobarb would cause respiratory arrest. When informed that James' head was literally swelling because of the tumor, he said "Oh Jesus." So that didn't help much. Convinced we were losing him, we cradled him in our arms while he was still seizing, sang to him, and told him it was ok to go and that we loved him very much. I called my family and told them it was time and to come. I used the word respiratory arrest because it somehow sounded cleaner than dying. By this time, Kara's Dad had our usual pediatrician on the phone and she told us that James was not dying, and we could give him more phenobarb. So we did. It didn't all at once- but James breathed fine. Exhausted, we fell asleep. When we woke up, James was still alive. So were we. Concerned phone calls from our oncologist (who I think have probably given that poor resident quite a tongue-lashing) led to a new plan for James' seizures and pain medication, as it's very possible at this point his movement is a pain response, and as he can no longer cry, something we need to address in a different way. Together, the changes- the medications delivered to our home by our new friends from hospice- appear to have worked. James is at peace once more. The experience shook me. Having an academic understanding of the fact that your son is at home to be at peace is one thing. It is quite another to hold him in your arms and believe he will be leaving you soon.

After napping throughout the day after our adventure overnight, our families reconvened at our house and we hosted James' party. Everything fell into place naturally, with all the people that love him surrounding him. We'd never planned to do this today, we just did it. Kara mentioned it a few hours before it happened, and in those hours we put it all together. We sang him happy birthday- the boy deserves to hear it at least once, and sat around and talked. People took turns laying next to James and holding his hand. I believe that he knows how much we love him, and that he enjoyed his party. Jamesie always liked a good party. The most important thing now is that James know how much we love him. When we first learned of his diagnosis, we committed to being positive about this experience. Although our plans have changed drastically since that day, we remain committed to that. I do not think James is well-served by a gathering of friends and family on death watch, mourning him even while he lays next to them, breathing and looking as beautiful as every. I think celebrating his life, celebrating the joy he brings into our life, is the better choice. And so I choose that.

That's not to say we don't break down- we do, often and about the strangest things. His firetruck in the corner- he used to love to honk the horn, he got a kick out of making it go over and over again. Reminiscing on a walk about when mommy was pregnant with him and could barely make it around the block last summer. A thousand small things, as our very identity is tied up in him. But we can't help him by doing that. We can only love him. And so we do.

I continue to be overwhelmed by the outpouring of support and love for James. Hearing about how his story has impacted people positively warms my heart. Please continue to pray for James, that he continue to be comfortable and at peace.

Day Twenty Two

James is resting peacefully. The alarms complaining of his irregular heartbeat, his low pulse, and his respiratory rate are no more. He sleeps with Mommy and Daddy in the middle of the bed, our perfect little angel. He's upside down and on his side here- just the way he likes it.

Our first day home confirmed how absolutely right our decision was. James is visibly more at peace released from the shackles of his monitors and his IVs. The only IV that remains is the TPN drip which feeds him through his port, pumped discretely from a bag the size of a small purse. Kara and I change the batteries and reset it everyday. At the hospital before we got home, I worried so much about where we'd plug it in- I envisioned an IV pole with a three hole plug and just knew our fifty year old home with its two hole outlets would never work. It seems silly, but all of these little details hit me because I was so scared we wouldn't be able to take him home. The reality is much more manageable, a tiny pump and a single line. The hospice nurse said she's had some kids put it in their back pack or their purse. It still gives me chills when she uses the plural.

I wish I could say I knew peace. But the truth is much harder. The truth is I have no idea how to deal with what I am faced with, that I simply act because the circumstances demand it and no choice remains. Someone told me the other day they admired my courage. I am not courageous, I am terrified and stumbling through the motions of my life. I am listening to a hospice nurse explain how to provide my son with doses of ativan to break a seizure- but only if that seizure lasts more than five minutes. Otherwise we save the ativan. I am taking delivery of an oxygen machine to provide him with help breathing- he will need the help. I sign and date, placing the machine in the corner by a toy he'll never use again- and it's still singing at me. I still feel in complete shock about my reality- the dreamlike quality of everyday has not abated. To me courage requires a choice, a decision to overcome and move forward. I never made any choice- I never had a choice. James is the one with courage.

Yesterday Kara, James and I had to get our blood drawn as part of genetic testing to determine the cause of James' tumor, which may but probably is not inheritable. I cannot tolerate needles. I literally faint. As a boy during my various hospital admissions, I regularly required either general anesthesia or a team of seven nurses holding me down to get an IV. Mortified as ever, I very nearly did pass out. James took his blood draw with no complaint. He never complains, and when he could, he only stopped smiling for a few minutes. As always, I am humbled by him. It is a tremendous blessing to be his father.

This morning, our hospice nurse came again to provide guidance through our first full round of giving James his medications. She's from LA, and when she told me that it made perfect sense. She has a very calming, industrious earth mother presence. She appears as comfortable in our home as anywhere else, placing her laptop on the dresser while watching us give James his medicines on our bed, using the same tone she used in James' ICU room when she first met us. She's worked with babies with ATRT before. I envisioned a much grimmer scene somehow.

James himself appears much the same. He is not very responsive- as his brain continues to swell, he will become even less so. Yet my boy still loves the same things- though he cannot feed anymore, his highest level of activity comes when we syringe feed him Kara's milk. It soothing power remains. He hates laying on his back, insisting on wiggling until he finds his way to the side. And even now in his long rest he sleeps the same way, legs akimbo and his back arched, a gymnastic display that is comfortable only to him.

Our pediatrician told us yesterday that the oncologists had told her they had never seen in all of their practice a tumor as aggressive as James'. As the physician's assistant told me yesterday, even if we'd begun chemo the day after James' big surgery, the result would always have been the same. I take comfort in that.

Tonight we took James for a walk, pointing out all the things along the way we thought he'd like and talking about what a beautiful boy he is. I believe he can hear us, and I believe he knows how loved he is. Love was our first gift to him, and the only one that matters. None of the toys, the furniture, or the rest ever mattered. Only love. And that is the gift we will leave him with.

Thank all of you for the overwhelming support we have received from all of you. It means so much to us to know how much people love James and care for him. Knowing that he is working in the world means so much to us- we have always believed James is very special, and we are glad you all agree. Please keep us in your prayers, and pray that James continues to be at peace.

Day Twenty One

I am taking my son home today. I am taking him away from the wires, the needle pricks, and the constant pain he lives in. I am taking him home to the place he lived in and was loved in. Where Kara and I told our families we were expecting on Easter Day last year. I stood in front of the fireplace and told them, we gave each one a framed picture of his sonogram with a verse from Jeremiah printed on it "Before you were formed in the womb I knew you, before you were born I set you apart." And so it was.

Where James learned to crawl across the kitchen, always aiming for the dog bowls, eager to give their food a try. The entryway where his pack and play displaced completely our console table, becoming a new, more fashionable piece of furniture. The walls he tossed sweet potatoes onto while he still struggled with whether or not he liked solid foods. The chair in the corner I spent hours rocking him in, positioned just so you had good angle at the remote. I only ever used my fingers to change the channel- use the whole arm and James wakes up.

I am taking him home to his room, with its stencil/stickers ordered from Etsy, which apparently means Malaysia. It took us a good hour to figure out the directions. The T-shirt knit rug Kara and I bought at Buy Buy Baby, neutral so we could use it in his brothers and sisters rooms too. The rocker, also cream. We doubled up on coupons for that. The crib James sleeps in upside down, so he's never under the mobile- though that's the part of the crib where his piano sits, mounted on the side. He loves his piano. He always wanted to be moving, and before he could crawl he could flail, and he cackled when his feet made contact. The little boy's rocking chair that belonged to me and to my father before James, a frequent photo shoot accessory.

Home to thousands of memories, even in the short eight months he's called it that. James colonized the place within a week, and now it belongs more completely to him than it ever did Kara and I. His toys, his dogs- a constant source of play fighting entertainment, even his table, where he lords over us in his high chair. We call him Master Jamesie, for he is master of all that he surveys.

Above all I am taking him home to be with the people who love him. Kara and I have often asked how we could have been so lucky to call him our son. I have often felt he was more of a gift than I deserved. This is our chance to show him precisely how much we love him, to envelop him completely in that love and to repay the gift of his easy smile to us for so many months to him.

If I thought any chance whatsoever existed for my son, I would ask him to fight. He is a brave boy, and he has endured all that he was asked to bear with no complaint and a sublimity that defies reason and speaks to God's grace in him. If we asked him to, I believe he would fight. He would struggle, do battle against his tumor and all that was requested of him. But I will not put him through that struggle simply to watch him strive valiantly and ultimately to have us, medicine, and his body fail him. To watch him whither away in pain before he is taken from us. In the words of our neuro-oncologist today, this cannot be cured. Her voice is not alone. Tumors like James' do not have survivors, only sufferers. I do not want my boy to suffer more. I want him to know the perfect love that surrounds him.

And so I am taking him home to know that. As our oncologist speculates, the time left to James is measured in days and weeks, not months. We have come this far, and James has carried us. We will have to carry him the rest of the way.

Please respect our decision and support us. We are entering a new phase of our journey, and we will need still more support. Pray for us and James in the weeks to come, that we find peace, and do not know pain.

Day Twenty

We spent most of the day angry. Yelling at doctors. Trying to impart our sense of urgency in them. Begging for tests, for answers. We yelled. We cried. We pulled all the strings we knew. And none of it matters.

The only thing that matters is the news. We got the MRI. James' tumor is back. All the way back. It's filled the space left from when we removed it, and spread like tendrils from a wildfire through his brain, coating the top of his brain, clustering around his brain stem. The images are vivid and terrifying. And it all happened in two weeks. Two weeks ago, James had a successful surgery. Today we learned in the time between that surgery and the date scheduled to begin his chemo, his tumor has not only returned to full strength but actually become worse.

Rhabdoids are extremely aggressive tumors. James' tumor exists in the most aggressive category of rhabdoid tumors. Our oncologist was genuinely surprised by how quickly this happened. You could see it in his eyes. This changes our landscape, and our world. We now have two options. The first is to take James home, to make him as comfortable as possible, and try to show him just how much we love him in the time we have left. For that, the timetable the doctors are talking about is expressed in days and weeks. Eventually the tumor will damage his brain stem sufficiently that he will simply stop breathing. The other option is to immediately begin chemotherapy- another surgery to remove the tumor would be pointless, as during James' recovery time the tumor would revive itself completely as it just has. Our oncologist expressed extreme skepticism about the usefulness of chemotherapy at this point- given the aggressiveness of the tumor, any gains would likely eventually be erased. Of the children he has treated with tumors similar to James', none have survived.

They asked us for a decision. We couldn't make one. We asked for the night to decide. It's the longest we can wait to begin chemo if we are going to do that- every hour, every day matters. On one hand, for James in his current condition chemo means chemo in the PICU, remaining on the ventilator, and getting sicker. Possibly sick enough to where when it becomes clear that the chemo isn't even buying us time- the most it could do- we won't be able to take him home. We'll lose him here. Home means we'll watch our son die in the room we decorated for him less than a year ago, in the convertible crib that never made it to the a toddler bed stage. There is no right decision. There is no wrong decision. We're beyond that duality.

We don't know what we're going to do. We feel like we're being forced to choose between making James suffer and giving up. I abhor both. We were prepared for a war, for a marathon of chemo and a devastating year of trying to make James better. But we never even got to fire the first shot. James is our perfect angel, he was born perfect in every way, and he remains perfect. Even now, with everything he's been through, his natural resilience remains. He holds on tight to your fingers. He's so far away from stable- so far away from three weeks ago or even Friday. His breathing remains in doubt. His heart rate is irregular.

Please don't tell us what to do. We don't need opinions, or second guesses. Please just pray for guidance and that we have clarity for our decision. Pray that it brings us peace, either way. Pray for James, that he not suffer, whichever course we choose. You all have walked this far with us and we thank you. We will certainly need all the support we can get moving forward.

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 Thirteen

This photo marks the high point of James' day. I'm jumping up and down out of frame to entertain him (James likes cardio with his entertainment), his mother is cooing at him constantly to encourage his posing, his giraffe is well within grabbing range, and he's also achieved an almost perfect arch of his back to look at us, and more importantly, avoid sitting at an incline like he's supposed to. The world is in perfect focus on him, and as James knows, that is precisely how things ought to be. If we were concerned about spoiling James prior to all of this, it's something of a foregone conclusion now. But how can you deny that face? This smile meant the world to us, James had been so lethargic and in and out of it yesterday that we were hugely excited to see him smiling again.

Our night did not go as well as our day today, and our day got progressively better as it wore on. James woke up to eat, and barely made it ten minutes into feeding before throwing up. It took the better part of an hour to clean up, change, and calm him down. We can tell when he's really upset because he becomes almost inconsolable- James usually is relatively easy to sooth, but when he's sick with this, he's nowhere close to that. The nurse, one we've had before who has been very good to us (James likes her ponytail, even if he hates her and all nurses as human beings) gave James some tylenol and noticed some swelling near his incision site from his big operation on Monday- the skin had acquired an almost spongy feel, indicating that due to the hole in his skull, fluid was seeping into the place between the brain and the skin. The amount did not appear critical however, as it was not seeping out of his incision. After our day of pleading with the staff, it was nice to have someone notice something without us complaining about it. James threw up the tylenol an hour later, literally waking up solely to throw up. It took more time to wind down and clean up. We kicked out the technician when she came to get his vitals afterwards, electing to let him sleep.

Around 7:30 we were woken up for rounds with the on-call neurosurgeon and her (relatively small) number of groupies. We'd been lobbying for an EEG due to James' eye fluttering, and she agreed to give it to us, more to placate us than anything else I suspect. She also arranged for an LP (lumbar puncture) to get tests on James' spinal fluid and to check his pressure. With two tests ordered, our day became yet another day of waiting on hospital time to run its course.

The LP came around 11:30. Naturally, the EEG called around the same time, meaning it had to be rescheduled to tomorrow. It is sometimes frustrating that scheduling makes it difficult to cluster James' care in a way that allows him more rest without the steady rhythm of procedures getting in the way of the day. One positive of the LP- and there were few- was that James was sedated for it, meaning he didn't have to hurt because of it. As he'll be getting chemo through LPs in the future, we know he'll suffer through more, but we were glad to keep his suffering as minimal as possible.

The LP meant still more time waiting, and it took longer than expected. In the end, as we feared, it revealed nothing. James' pressure was fine, his fluid was fine, no one knew why he was getting as sick as he is. And so more tests commence.

The introduction of neurology meant a new posse of groupies when the neurology attending appeared. He rolled about 8 deep. They briefed James' history and punted to the EEG. The thought, currently, is that his vomiting and eye flutters are unrelated, though we'll see. The appearance of yet another attending proved again the varying bedside manners of the different specialties. Neurosurgeons tend to the brusque. Deliberate. Identify the problem, operate, hand-off to the next discipline. They don't really do emotions well. Crying is ill-advised. They tend to warm up to you over time, especially if you stay rational. There are varying degrees of course. The neurosurgeon who operated on James was an absolute social gadfly compared to the attending this morning who woke us up in bed with the line "So why are you worried about seizures?" It was everything I had to resist the urge to reply "Why are you not?" It was also everything I had to keep my eyes open. That said, they all do appear very confident and competent, and we were pleased with the outcome of James' surgery. I'll trade bedside manner for competence any day.

The neurologist, like the neurosurgeons, didn't seem like a real social animal, but seemed more intellectual, less practical and focused. Extremely intelligent, but a bit detached. We'll see how they evolve.

The oncologists we've worked with so far have been far and away the most talky of the bunch. More Q &A, more this is the plan, this is where we're going and why. Given that of the three disciplines I mentioned they are the ones who are likely to have the longest continuous exposure to a patient, this makes a great deal of sense. A rapport becomes important if you're going to run someone's life for a year. Less so if you're only looking at a week or two.

These are uninformed, generalized observations based on an extremely small sample size of course. It will be interesting to see the way our relationships evolve with the staff and the physicians as we progress in James' treatment. So far, we have been very pleased with the care we've received. Frustrations come and go, but by and large we feel as if we're always free to voice our concerns- though we don't always get the outcome we'd hoped for.

The other highlight of our day was a conversation with one of the oncologists. After spending some time and doing a little research on ATRT Kara and I had a barrage of questions for the oncology team, and to their credit they spent the better part of an hour with us answering those questions and providing us with a preview of the next phase of our journey. Equally important, they indicated that going forward they would be managing James' care. We will likely move to their floor tomorrow. James will undergo many tests prior to beginning chemo, and one blessing of our still being in the hospital is that we can get them done in one "trip" such as it were.

James' treatment will be very intense for the first 12 weeks. Children's treats approximately 2-5 cases of AT/RT a year. Again, there's perhaps 30 cases nationwide per year. All of the children go through this protocol. We will be inpatient for four to five days during chemo. We'll go home, but we'll probably be back with a fever, sickness, etc. before his next round for four to five days. We'll go home for two or three days, and then start all over. After the first 12 weeks the treatment tapers off a bit and hopefully once we go home in between treatments, we'll stay home. During the first twelve weeks we're probably looking at about 6 weeks of nights in the hospital, if not more. While this seems daunting- especially given the toll the last two weeks have taken- we trust that the perfect gift of our healthy son in a year's time will make all the sacrifice worthwhile. We pray for minimal complications, and as much time at home with him being "normal" as we can manage.

Although we still have no diagnosis of James' problem, he does appear to be improving. He's talking more and hasn't vomited in a little while. We're hopeful that whatever setback he suffered was a temporary one that will not impact our schedule, if anything, with any luck being here we can expedite the process of getting the tests we need to get before James begins treatment.

Sometimes, it can be difficult to find the positives in our situation, though we always try. In times like these, I find my son's smile more nourishing than even the most generous venti latte. If James can smile, we'd be fools not to. As always, thank all of you for thoughts and prayers.