Kara and James

This is a picture of pregnant Kara. She was radiant.

Kara worries a lot. She worries about things that would never even appear on my radar, like matching clothes and ottoman throws. She worries about people more than I do. I am often more selfish, more indulgent to put it mildly. I don't usually worry, I tend to assume that everything will work out in the end, one way or another. Kara once found a flight to Germany on the cheap over spring break when I was in law school- nestled perfectly between exams and deadlines that demanded my full attention. She thought it might be fun. I decided, somewhat whimsically, that we should go to Germany. I responded in what might be described as a typically Matthew way- somewhat impulsively but decisively. I tracked down the flight, compared alternatives, and within a week or two was mercilessly scouring travel sites for the trip we’d be taking to Germany over springbreak, law school or no, and regardless of the fact that we couldn’t actually afford it then. I am more easily distracted, and much less practical. She is more grounded, more level headed, and a thousand times more practical. We go to test drive a car and I buy it then and there, provided I walk away with what my research and I consider a "win." Kara would never do that.

All of this is to say that Kara and I are complete opposites, in almost every way. Our approach to parenting was no different. I will freely admit that I was terrified of becoming a father. Anxious, excited, yes, but also deeply terrified. While I love my father dearly and admire him, when I was young we were never really close. We simply didn’t have a lot in common. In terms of temperament, we were never anything alike. When I was younger I was often difficult, broody and introspective with a quick temper. My father is gregarious and quick to make friends. If he wanted to talk baseball, I wanted to talk history or politics. If he wanted us to play golf together, I quit playing on general principle. When we learned Kara was pregnant, I hoped for a girl, because I wasn't sure I knew how to foster a good father-son bond. Kara was the only person who thought it would be a boy- and as always, Kara was right.

Especially during the first few months of James’ life, I found it hard to adjust to fatherhood. I had no idea what to do. I loved James with all of my heart, but I made a lot of very poor decisions. I struggled with my role, with how to act and what to do. If it had been up to me alone, James probably wouldn't have done so well. But it wasn’t. James had Kara too. He had her calming, steady presence to look after him. And she did. Kara mentioned once that she never spent more than a few hours away from James. That was not the case with me. I spent days and days away from James. I have many regrets. More than once I told myself that if I missed x, y, or z it would be fine- I had a lifetime to make up for it. I was wrong, in every possible way.

I got better. It took a while to sink in, but fatherhood grew on me. My fears ebbed and I grew into my role. I embraced it as mine, not anyone else’s, and did the best I could. I came to realize I didn't need to be anyone's vision of a father, just James'. James and I developed our own rapport of actions and habits apart from Kara. Games like boom goes the baby, where I’d send him soaring higher into the air than his mother would ever allow. He was a huge fan of my swing pushing style. We had our own collection of nicknames and vocabulary. I called him little son. I'm not very original. We got to know each other better. Eventually, it became impossible for Kara and I both to imagine what our lives would have been like any other way, with a daughter or with any baby but James, with all of his unique quirks and characteristics. Even when he got sick, I always resented people who in passing would treat him and other babies as if they were interchangeable, from absent minded respiratory therapists insisting they "always" do this to the lazier general (not neuro)anesthesiology nurse who failed to notice the sex of the child she was about to operate on. People often forget that even at eight months old, a baby is more than that- each is a person, slowly acquiring the traits that will define them.

Kara was instinctively and naturally brilliant with James. A love poured from her for him that was a privilege to see. Her precious baby boy, from the first moment in the hospital when I held him against her chest. She knew to do all the little things that I did not, and performed them flawlessly. I learned a lot from her example.

When James became ill, Kara led by example. No crying in James' room, bright faces and games for Jamesie. Our disparate styles became an advantage, as each of us processed the information in our own way, so that we could inform the other. Our perspectives often differed, but they informed one another. We learned from each other, and because we were different, we were able to be strong at different times, which often translated into the right times. We could lean on each other, so that both of us could be there for James. We were finally fully functional. And none of it would have happened without Kara, indeed, most of the best and most perfect moments of James’ life are impossible to imagine without Kara.

There is no one on this Earth with whom I would have preferred to go through that with. And there is no one who could have endured it so perfectly. Kara is, by any definition of the word, a fantastic mother. I truly believe that God chose her to be James’ mother because he knew how extraordinary a mother James would need, and he knew that Kara could provide that to him. I am grateful for that, and much more.

Digital

I'm loading all of the pictures onto google. Trying to inoculate them and keep them safe permanently from the forces of the world. Broken hard drives, lost phones, and power surges. All of these are too fraught with danger for pictures of my James. Completely unable to protect my son in the flesh, I will immortalize him digitally. I will create a permanent record of these memories that cancer and nothing else can touch.






You can see him getting sicker in the pictures. There's an odd chronology. He's smiling, and then slowly becoming more distressed. He comes up in the hospital pictures at first miserable, but we're documenting it because it's a milestone- Baby's First Time in the Hospital- not because he had cancer. I still remember checking in at B6, toys in hand, joking that we were in for a long night and wondering if we should take bets on when the doctors would show up. I sometimes have a real problem taking things seriously. I never imagined we'd make our way to the PICU in less than five hours.

The pictures create an odd sort of timeline, one evolving into hell. A picture of his insurance card I sent to Kara to take him to the doctor with. A picture of him in the Medical City emergency room lying on Kara's chest, back when we were trying to take care of dehydration that was never the problem, and the least of the symptoms. In his Moses basket before we went, perhaps the day before, crying because his head was splitting apart and no one knew. I feel so guilty I did nothing to help him, that I didn't know what he was trying to tell me. In a Mavericks shirt Kara bought him from a street corner, his one and only championship. He's sick but still trying to laugh. The tumor never managed to rob him of his joy. Now the picture show that he's in the hospital, now we know. He's playing despite the drain sipping fluid off his brain- we're struggling to keep his hands clear of the wires, which he naturally found fascinating. A giraffe in hand a bright smile- never mind the the wires, the drain, or any of it. James didn't have time to worry. He loved to play, He loved everything.



Now he's had his surgery. Poor baby, but he's still so happy. He was never the same after. He never managed to get completely well from the surgery, but the tumor did. He never had the time, he wanted to, he always did. He fought so hard. I am proud of him. Prouder than I've ever been of anyone of anything. Now the port's in him and we're spiraling into the last few weeks. Days are precious but we don't know it, we're ignorant to the future. We still have hope. We still had James. Now it's too late- he's at home and in his moses basket again, but now he can't cry anymore. All he can do is rest, and wait. Now we're just clinging to hours, desperately trying to freeze time. When I think about it now I feel guilty for sleeping. I only had so many hours and I wasted at least a few sleeping, when he was still alive and breathing. He woke up the morning he died having trouble breathing, I wonder, if I had stayed up that night, would I have noticed when it started? Could I have done something? I should have known better, done things differently. I feel guilt because it's better than loss, it's easier to blame yourself than to acknowledge there's no one to blame.

So I'm memorializing all of it, every picture on my phone, in my possession, or anywhere. I will test and break gmail's limit, and after that I'll find somewhere with enough space to store it all. Physical storage, like the flesh, is too weak to be trusted. Of course the internet itself is just as impermanent, only as reliable as your connection and your power supply. There's no safe place but my mind really, but we may as well double up on them.

A few weeks ago I lost my phone. I subsequently recovered it, but while it was lost I kept worrying about it. I had everything backed up, but I kept worrying I must have missed something. What, I didn't know, but that didn't stop me. It also made me worry about the reliability of purely physical back up. What if something happened to my phone and my computer? In response I've begun digitizing.

When your child dies, you become all too aware of the value of the pictures you do have. The timeline is frozen, and your experiences are ended. Therefore each picture, and you know exactly how many there are, becomes precious, a treasure. There will be no more, and you know that each and every one is precious. Each pose, each smile, every second of video. You once took the minutes casually, watching him and not recording. Now it is all essential, it is all unique. The fear is forgetting. Preservation becomes a goal in and of itself.

On one level this is all pointless. My son is not, and was not, the sum of his pictures. Each and every day of his life he was more- a gift from God uniquely blessed. Each of those days was a gift. We were blessed to have him. We were honored to know him. Still, a certain paranoia infuses everything, a need for preservation. It's more for us of course. James has no need of it. It's just something to do. Something to remember. As with so many things these days, I'm finding that the goal isn't necessarily what you want, but what makes you feel a little better. It's not about huge victories, but small ones scattered throughout the day. There's no epiphany, just an assortment of moments that move you forward.

Thank all of you for your continued thoughts and prayers. Today marks 4 months from the day we lost James. In a few articles I've read, they've suggested 4 months is a magic number, the number of months by which it starts to make sense. I don't know about that. But I do know that we've been blessed with a lot of support, and I thank you for that.

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.

Wallpaper

There is a picture on my- James’ iPad- of James smiling. It’s from his newborn shoot. There are two different pictures of him on the iPad. One is the smiling picture from his newborn shoot. He’s looking at the camera from his side and his eyes are wide open, mouth open, gawking at the lens. During the shoot we paused several times to try to lull him to sleep. The best, or most classic, newborn pictures are those of the sleeping, innocent child. They are designed to capture the child at his most innocent, before age and time wash away the wonder of a sleeping baby and leave you with a smiling child. James refused to sleep during his newborn shoot. We tried feeding him, rocking him, warm blankets. He knew better than to sleep, even at 11 days old. James didn’t have time to be that kind of baby. I think he knew that. He never napped much, he was always wide awake. His eyes were incredibly alert, just as they are in that picture. He always seemed so much more engaged than I thought a baby would be. Perhaps it is only that I was his father and I need reasons, explanations to provide some theme so I can justify things in retrospect. But I think it was more. The other picture on the iPad is the wallpaper picture. He’s smiling at the arboretum, sitting in front of the tulips, a hand outstretched to grab one. Joy came so easily to him, to my wonder and relief.

My Dad bought the iPad while we were in the hospital. James loved to play with phones, my Dad thought that the iPad would be something fun for him to play with during chemo. James had a tactile fascination for how responsive the touch screens were. He marveled at how easily he could manipulate them. The iPad was something we could use to entertain him during the hundreds of hours we’d spend in the hospital while James got his treatments. We eagerly loaded it up with every children’s app we could think of. Doodling apps, PBS Kids, Disney, Rattles, and more. We researched the “top” kids apps and downloaded them all in James' hospital room, liberally abusing the Hospital's free Wifi. We consulted the nurses for advice.

The apps mock me now. Eveytime I turn the iPad on to fire up hulu or check my e-mail, I feverishly scroll to the last screen where I’ve stashed all the non-kid apps. Past Elmo, the Christmas Rattle, and the Doodler James once used to trace lines across the screen. I don’t always make it. Sometimes I’ll be a touch slow, click on the doodle app and wonder that my son was once alive enough make the doodles here. I e-mail them to myself, over and over again, because I always want them at the top of my inbox, as if he just drew them the over day. If I spend all my time on James I won’t do anything else. I won’t ever delete those apps of course. I won’t do anything to materially alter the IPad, that’s inconceivable. It belonged to James, and is therefore sacrosanct.

The iPad is just one reminder. A symptom of a larger, intractable problem. A reminder of a hope, dream, and future I once had that will never be. No hours of chemo, no need to worry about ways to entertain him through long hours. No need to worry about infections. The hard work I spent studying the notebooks the chemo nurses gave us, harder than I ever studied for any exam, wasted. All of this made still more frustrating because I spent time on that instead of with him. All of these are reminders that there is nothing left of James to hold onto. The feel of his hair, the tenuous strength of his fingers grasping yours. All of that is gone, with his piercing eyes. There’s nothing to hold onto. I’m left with his newborn photo, James stubbornly mocking the photographer and refusing to sleep.

That’s not to say that there aren’t comforts. We have had a great many. James has left a legacy far greater than anything we dreamed possible. I am moved by the responses that his story has generated. Still, when I’m flicking through the touch screen to avoid laying eyes on the doodle app, I can’t help but wish I was reading a blog about someone else’s life. Someone else’s child, and not writing about my own. I would never wish what happened to James on anyone else. No one should experience this. I just wish it didn't happen at all.

As always, thank you for your prayers. They are a continuing source of strength.

Two months

Two months ago today, I woke up and knew that James would die. I woke up with the sound of his labored breathing in my ears and hoped it would pass. I bargained with myself even then. A few minutes on oxygen will get him on track, just a few. I won't turn the oxygen on all the way- I'll leave something in reserve for when it gets worse, because it's not the worst yet. I think the mask is broken. That must be why it's not working- I changed the tubing, that will make a difference. Small things, little deals that mattered to no one but me.

There was no bargain to be made though, no deal to be struck. Within a few hours I'd given up and turned the oxygen on full blast- the obnoxious whir that at first seemed so annoying completely faded into the background. After he died I couldn't get it out of the house fast enough.

This month went faster. The timelines are accelerating, especially as we insert ourselves back into the world at large, in roles that were suspended totally while we watched James. Even so, the world still seems to have lost its axis. In many ways, it's a question of relativity. Your child is the thing in your life by which the rest of your roles are defined- your world in many ways revolves around them and their needs. Your work feeds them and provides for them, your family is based around them after they're born, not your parents. Your relationship with your spouse is triangulated by them. Without them, the central narrative around which much of your life depends vanishes. The rest of the roles have to readjust themselves without a common point to fix themselves on. Everything suffers collateral damage, and the process of adjusting is colored all the while by grief. No matter how much time passes, it still seems to me on some days that it didn't happen, that it was all some sort of nightmare that I am almost certain to wake from. But that's just more bargaining. I'm not waking up.

So I wouldn't say it was a better month. Faster, yes. But better is also relative. James didn't die this month, so this month was relatively better than July. Thank all of you for your continued support and prayers, it is a great blessing to know that James is in your hearts.

Change

The baby aisles in the stores are changing. New products drift onto the market, old ones are phased out. It’s only been a year since we stocked the nursery, and it’s already going stale. Items have been placed on clearance, discounted and disposed of for newer models. The flavors of pedialyte are even changing, or at least the ones they stock are. The world moves on imperceptibly, and James remains precisely the same, unchanged in a plot I pick the rocks off when it rains. It is to be expected of course, if James were alive, he’d age and acquire new toys. The changing seasons would translate naturally into changing outfits and accessories. Football season is around the corner, if he were here I’d buy him a ball, a new Baylor bears outfit that fit to replace his old one, now much too small. In a few years, he’d have probably realized, wisely, that the Bears were awful. I wonder what team he would have chosen to replace them.



He’d have started talking soon, building the syllables of “ah” “ma” “ba” and “da” into something approximating language. The closest he ever came to forming words came shortly before his big surgery. It was 5:30 in the morning and we’d been up all night with him. He cried and cried because he couldn’t eat and we wouldn’t feed him. Along with a chaplain, we sang to him, and the tunes (all poorly rendered) distracted him enough to stop him from crying. A few minutes before we finally left for the OR, he started talking to us. Bahs and ahs, mahs and dahs. He strung together “ma-ma” and “da-da” though that very well may have been my wishful thinking. After the long night the grim morning awaiting us, I felt relieved, grateful. Even if it was only in my head, I’m glad we got to hear it. I wonder about what else he had to say.



He was always ahead on his developmental “milestones.” Before he got sick, I just assumed he inherited my impatience. It was also the source of an odd, unearned pride, something along the lines of “He’s so quick! And he rolled over a month early! Clearly he will both win the Heiseman and become a Rhodes Scholar.” Now I often think James just knew he didn’t have the time to wait long enough to hit everything on schedule. I wonder what boxes we’d be checking now, what dates we’d mark to belatedly record in his baby book a month or two later. There are no new dates however, only old ones that we’re becoming farther and farther removed from.



Many changes should be occurring, but it is not so. He remains where he is, frozen in time. No new pictures, no new words, no new anything. Just memories that I play over and over again in my mind, afraid they’ll fall into some crack and never return.



There’s a lot of things I miss, but in an odd way change is one of them. I miss knowing that things were going to change, that James would change. It seems odd for him to have become a memorial, fixed and unchanging. He was always more dynamic than that. Perhaps that’s why, as the absence of seeing him change so quickly simply brings home the fact that he never will change again, because he is not here to change.



It’s not that his life isn’t being celebrated, that we’re not joyful for the time we had with him. I think everyone who knew him feels that way. There is much to be thankful for, and in the balance, James’ life contained more joy than anything else. He certainly left us with more. All of that is true. It’s just that James is a joyful angel, but he’ll never be a toddler.



On the other hand, James never needed to change. In my completely unbiased, objective opinion, James was the most perfect little boy who ever was. You cannot improve upon perfection. Now he’ll simply be perfect for eternity.

Empty

Today was the absolute worst day of my life. Those of you who know me well know that I have have been through my share of bad days. But watching sweet James breathe his last breathe was the worst of the worst. I honestly believed until the very end that we were going to get our miracle for him.

I really hadn't considered that James might die until the MRI on Tuesday. When we found out that he had a rhabdoid tumor, I knew the percentages weren't on our side. But I knew that the odds were increasing, and that we had a very successful resection surgery. As Terrible as this was, I asked the doctors how many cases likes James' they treated a year. They said typically 2. I also asked how many they were currently treating. They said 0. In my head, i did the math. It wAs June. I Assumed that they had one other case this year and that child had not lived. I somehow in my head determined that James would be the 1 of 2 that made it. I know it's terrible to think that way, but I'm trying to be honest here.

We knew when we woke up this morning that today would be James' last day on earth. I don't want to dwell on the details- today was long and very different than what we were told would happen. Sweet baby was a fighter until the end, doing things on his own time. Just like he did coming into the world. He wouldn't have had it any other way.

So precious James met Jesus in my arms, while being told how very loved he is by his daddy and I. We told him that we were so sorry he had to be brave and go before us- even though we so desperately wish that we could show him the way. He was so very brave. We told him about all the people who were so excited to meet him there. We told him it was ok to go and join his angel friends. We told him how proud we were to be his parents, and how much we are going to miss him. Oh how I miss him. I know it's only been hours, but I miss him so much.

I want my baby back. My arms are empty. I'm a mommy without a baby. And what does that even mean? I know it's so selfish to want him here, but I would give anything to have him back. Just for a day. Just for a minute.

I take comfort in the fact that James is completely healed. Last night, the tumor was literally pressing out of our baby boys head. I know we haven't talked a lot about that, but it was making his head swell so much. It was literally trying to come out of the incisions that were left after his biopsy, craniotomy, ventriculostomy, and external drain site. Right after James went to be with Jesus, somehow the rumors were gone, the swelling had subsided, and James was made perfect again. I truly believe that God healed his physical body so that we would know his heavenly body had been healed as well.

I held him for a long time after. I knew that it would be the last time I got to hold my angel. And he is at peace now. For that I am so grateful. Matthew and I prayed and thanked God for blessing us with Jamesie for the last 8 months. Although we wanted him to stay, James had a calling so much higher than this earth.

That's not to say I'm not devastated. I feel like I don't even know what to do. And that's ok. I physically cannot even cry anymore tonight. I'm just numb. It's like I'm functioning on autopilot. But the whole world keeps spinning and my world stopped at 3:50 this afternoon.

I'm so thankful to you all for confirming to me that James' spirit lives on. His legacy is so widespread I cannot even fathom its depth. Thank you for walking beside us. Thank you for carrying us.

This poem speaks to me now, and to me, sums up how I remember my sweet Jamesie.

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

E. E. Cummings

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 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.

Sweet, Sweet James

As I write this, I'm sitting here weeping. My heart aches. I feel like my world is collapsing, and no matter what I do, nothing can stop it.


I was not prepared to hear that the tumor had spread. We have had a rough few days. James has been progressively worse. I knew that neurologically something had to be going on because of the large seizure. They even told us this morning that brain swelling was a possibility, and it was a cause that could not be treated. I knew that the swelling was an option, but I hoped that maybe something like some tumor regrowth in the pineal region (where his original tumor was) was the cause. Some regrowth we could take care of with chemo. Never did I imagine that the tumor would so aggressive in 2 weeks. No one else did either.


My sweet, sweet angel is lying in the ICU crib, heavily sedated. He has a tube down his throat. His eyes are unresponsive. He has a feeding tube and 4 different IVs are going into his port. His heart rate fluctuates any where between 80 and 200 bpm. He's not stable. The only thing that has finally leveled off is his sodium level, which is now in the normal range. Nothing has changed though, so it seems certain that the sodium level was actually an effect of the tumor, and not the underlying cause of the seizures and swelling.

I am broken. I can't imagine my world without James in it. I realized that I might actually spend more time with James in my womb than outside in the world. 40 weeks, 6 days in my belly. 36 weeks, 4 days on earth as of today. James has always been my miracle baby. For as long as I can remember, I would say to him, "How did Mommy get sooooo lucky that she got a James Camden?!" Jamesie would laugh and I would laugh, and we would "talk" about how the other babies couldn't possibly be as good as a Jamesie. I truly am the luckiest person in the world. Out of all the babies God could have given me, he gave me the most perfect baby in the world. He is the most precious gift, and more than I could have ever prayed for. I have said for the last 8 months that I had to have been doing something right to be so blessed to have James. And I am truly blessed.

Matthew and I were talking tonight, and I told him that I think that James must just be one of God's angels on loan to us. As you can see by the pictures, isn't he the most perfect angel? He came out of the womb so incredibly perfect, and has remained so ever since.


I am so, so blessed to be his Mommy. Even if he was only on loan to me for a little bit. But we do believe that God works miracles, and if He chooses to let us have James for just a bit longer, we will be forever grateful.


I don't know what we are going to decide in the morning. I am hoping that at some point tonight we have peace about the situation. I do know that I want peace for James. I want James to be able to have pain-free days and to be surrounded by those who love him more than anything. I wish so desperately that I could take his place. I would give anything to do so. But if I can't, then all I can ask for is peace for his body.


Please keep us in your prayers tonight and the days going forward. Please pray for a miracle. But I know that sometimes the miracle is in that God just couldn't stand to be away from precious James any longer. I know the feeling of longing he must have to be reunited with sweet James. Thank you so much for your continued thoughts and prayers. We cherish you.

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 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 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 Eight

Here is James preparing to make his trek home. As you can see he is freshly rinsed, finally had a hair wash and got his hair combed (the iodine mohawk was becoming extreme). Most importantly for his healthy self-esteem, James is dressed in something other than a diaper and leads. He is also notably free of wires for the first time in over a week. As an only child first child/grandson (both sides)/great-grandson of many people, James receives more clothes to wear in any given month than you or I may in a year. It is highly likely that this is the first and last time that he will wear this outfit. He is an unreformed clothes horse.

Obviously, the most important thing today was that James got to come home. The reprieve is brief. Given how many surgeries James had in the last week (four, six times under general anesthesia) his body needs time to heal before we begin his chemotherapy. The upcoming week represents the last time in the next year that James will be able to engage in many normal activities, from going to the park, baseball games, or just playing with his friends. After he begins his treatment his immune system will become severely repressed, and we will be unable to enjoy many of these activities. Kara and I have decided to spend the next week doing all the things we won't be able to do for awhile. Go to the zoo. Go to a baseball game. Go to the arboretum. The store. Family pictures before James loses his hair. All of the things that we do with James that this chapter in our lives will interrupt. Our lives are changing irrevocably, and we'd like to enjoy the things we might otherwise take for granted beforehand.

Aside from James happily being allowed to return home today, the day crept by in much the same, tedious way that our non "emergency" days in the hospital have. James was scheduled "on call" (i.e., when they have room) for a surgery today to put in a port through which he will receive his chemotherapy. As always, this meant James couldn't eat after midnight, which makes for an angry, fussy James. This will make giving him medicines and fluids simpler, in the last week James' arms and legs have become a virtual pincushion of IV sites, arterial line sites, and blood work sites. In addition, the drugs he will get for chemo are too caustic to go through an IV.

This surgery- which after multiple craniotomies seemed almost passe to Kara and I- was performed by a different set of surgeons, the general surgeons, than his previous neurosurgical procedures. The difference in the attitude and the procedures employed by each is noticeable. The neurosurgeons and anesthesiologist have much more focus, a greater sense of importance, than that associated with general surgery, tonsils and what not. Although initially things were looking up as we went back at 8:45 for the surgery, this didn't translate into any action as we spent the next two hours waiting in pre-op for the surgery to begin. We watched Regis and Kelly and had time to get a good start on the view- channel options are extremely limited.

One other frustrating fact of life in general surgery is that the staff doesn't know what's happening. They're there to perform a procedure ordered by another doctor, one routine enough that doctor does not need to perform it themselves. In our case this meant a long conversation everytime someone asked for James' "history" forcing us to explain all of his surgeries and the fact that he had a brain tumor. In one instance a nurse mistook him for a girl. This led to many examples of what Kara calls "cancer eyes" the look on someone's face when you tell them your son has a brain tumor. It's cocktail of pity, sorrow, and sympathy. It's one I can usually do without. I know my son is sick. I do not need the reminders. When they took James into the OR this time we were barely concerned- we've become so inoculated to the experience that something as pedestrian as the port, while still surgery, seems minor, not worth the worry.

The port surgery went well, James came back hungry and even more exhausted. After James got back from getting his port, things moved very quickly as we were prepped for discharge. Within a few short hours, we were driving home, James safe in the car seat he arrived in eight days before. I remember thinking that I'd thought it strange when our first nurse, all the way back in general admission, needed to confirm that we had a car seat to take James home in. I never thought we'd have to wait so long to provide proof.

Home with James feels familiar but unfamiliar, everything is colored by what happened over the last week. We cannot go back to the way we were. James is different. We are different. I am trying still to find the positive, and today Kara and I are thankful we have our boy at home again. We are thankful we can treat him to a week of normal life before we begin his arduous journey through treatment. We are grateful for a night of sleep where only James, not those attending to his needs, can interrupt us. i feel as if we were sprinting the 100 meter dash last week, and we've been given a weeks rest to prepare to run a marathon.

Thank all of you for your support as we transition into the next phase of our journey. Your thoughts and prayers are felt by us always.

Day Seven

Here is Jamesie with the newest member of his menagerie. As you can see, James has acquired yet another giraffe, a larger, plusher species. If you look closely you can see that he is peeking at you through the his giraffe pacifier, which he simply cannot shove far enough down his throat. He's also saying "Way to be an idiot and not turn off the flash Daddy." James is very technologically advanced like that, he always turns the flash off before he takes his phone self-portraits.

Today did not go as planned. Although that's true of most of our days lately, today in particularly seemed to just start off on the wrong foot and never really recover. I spent the night at home, which was nice. I slept about 11 hours until my mother woke me up inadvertently when she came in to get something. I showered again, shaved for the first time in a week, and went to the hospital.

The day was already in full swing- James was taken to get his EVD out soon after I arrived, and we were told that we could get to go home tomorrow. Things seemed to be going well. A certain frenetic energy was on the floor today, the staff seemed a little flustered and the floor was crowded. Things took a little longer to get done.

James threw up after he got his EVD out. There was some concern about whether or not that translated into more swelling. He went to a rapid MRI, which showed there might be a complication from the surgery. He threw up the steroids they gave him. Housekeeping never came to clean it up. A surgeon came around to talk to us for consent to get in a port for his chemotherapy. He threw up again immediately after, before we had time to process. We cleaned again. Housekeeping ignores my calls.

In the middle of this, everything stopped. We'd been told the oncologist would be visiting us at some point in the day to tell us when we could go home, etc. and just briefly speak with us about the results of the surgery, whether they'd need to go back in and get more based on the MRI results.

We were not expecting results. In a strange way, the fact that we weren't expecting them made it a bit better. Unlike yesterday, we weren't waiting all day for something to happen. Something just happened. When she came in all was well- the corner where she came to talk to us was a little crowded, so we sat in chairs and she, unable to find a spot, just sat on the floor. That's the kind of person she is apparently, and I like that.

Once we sat down she informed us, from the floor, that James has an atypical rhabdoid tumor. As many of you know, this was the exact opposite of what we were hoping and praying for. We were upset, but fortunately she remained very calm. Before speaking with us, she'd written up a treatment plan for James. She explained to us that the type of tumor James has is very rare. It is a type of tumor that occurs exclusively in children under 2 and is very aggressive. There are perhaps 30-35 reported cases every year. Five years ago, she said, this diagnosis meant death. Now, however, treatment is possible. The type of treatment James will undergo is very intense and very likely to change our life forever. James' treatment plan is designed to last 52 weeks and will likely go longer depending on how he tolerates it. We will undergo three week rounds of chemo, beginning each with a few days in the hospital before we can go home. The side effects of the therapy will be significant. The list of drugs they gave us that James will be on is over twelve pages long. I have yet to fully process this. Halfway into the conversation Kara joined our oncologist on the floor. I remember thinking that of the many different ways I imagined this situation once I knew it might happen, none of them involved my wife and the doctor sitting on the floor at my feet, with the doctor's PA, myself, and my father sitting over them. There is no known cause of this disease. As the doctor said, it is just really, really unlucky and unfair. There may be a genetic mutation that contributes, but that's a low percentage shot. James, Kara and I will be tested anyway.

After the diagnosis, the day passed quickly. We called family. We tried to make sense of things. James still couldn't eat- he had to get an ultrasound on his kidneys- if the tumor has spread anywhere other than his nervous system (which was clear based on previous testing) it would be there. The ultrasound meant he couldn't eat until afterwards, and as he threw up everything he ate before, this meant he was starving, and furious about it. We spent the afternoon trying to entertain him. Finally, we went to the ultrasound. We won't know the results for a while. Now we're feeding James, trying to take advantage of the short window between the ultrasound and the 12:00 cut off for food due to his surgery tomorrow.

Despite the diagnosis, we are looking for the positives. James will lose his hair. Fortunately, James already has had more hair in his life than almost every baby his age. At his first hair cut, the hairdresser commented she'd never seen a baby his age with that much hair. Perhaps God knew James needed to start with as much hair as possible, so that when he lost it he would already had a good run. Perhaps Kara and I are James' parents for a reason- I'll elaborate on that later. Likewise, there is a treatment for this. Survival is possible. In the five years that Kara and I have been married, treating this became possible. When Kara and I got married, nothing could be done about this. Now something can.

Below is an old picture of James- he's a few weeks old. He's trying to crawl over his boppy and get at me. He's always been an active, able boy. He can fight this, and he will. I take comfort in the fact that in a few years, he will have no memory of all this, the entire year that we will spend battling this disease. He can grow up without the burden of that experience.

The last week felt like a lifetime. I cannot imagine what the next year will feel like. I am thankful for everyone who has volunteered to walk with us, to pray for us and support us. We will certainly need the support, and your thoughts and prayers have already meant world to us. Thank you.

Day Five

Here is my son resting after his SUCCESSFUL surgery today. There are many more things to say about the surgery, and I'll get to that, but the main thing is that the doctors feel good about the outcome and believe that they have removed most of James' tumor, meaning that we get to move on to the next step of James' fight. It's going to be a long journey, but we're starting our right. For those who are keeping score (I am) right now we're looking at:

Tumor: 0
Jamesie: 1

For the first day in a long time, I felt better. This successful surgery means we can move forward with treatment and hopefully put an end to this tumor permanently, allowing James to live the healthy and normal life that he so richly deserves. Thank all of you for praying for us today, the outpouring of love and kindness that we have received and the number of people who have expressed their love for James is overwhelming.

The night before the surgery was rough. Kara and I both had trouble sleeping, as the added anticipation of the surgery complicated our already described difficult sleeping situation. In addition to that, even though we were on the floor, a few items of pre-op prep like a hairwash and an IV at 4 AM meant that Jamesie didn't sleep, so we didn't sleep. As I mentioned before we were thrilled that James finally regained his appetite and developed a love for solid foods. While fantastic, this meant that because James could not eat last night, he was starving on top of being exhausted, as he's rarely able to get much sleep without getting interrupted. He awoke at 12:00 SCREAMING and could not be consoled, he finally just wore himself out yelling and went back to bed. He did the same thing at 2:45. Kara was particularly upset because seeing her only aggravated him- he wanted to eat, and he was furious she wouldn't feed him. Fortunately as the operating time neared, James appeared to exhaust himself and calmed down.

Before the surgery, we were fortunate that one of the ministers with pastoral care at the hospital (who knows one of the pastors at our church who also came this morning) visited us and shared a scripture reading and prayer with her. Perhaps jut as important for our mental health, she also sang to James with us for about thirty minutes while we waited on the transport team to come and escort us to pre-op. Our family was able to see James on the floor before he left, and Kara and I followed down with him to the pre-op area. He was much calmer down there, and fell asleep before they woke him up to give him medicine to put him asleep, for some reason I thought that was funny. After the night, we were worried that he would be rolled away from us screaming. Fortunately, that wasn't the case. Although it was heart wrenching to watch him leave, knowing that he was calm was important. We shared a hug along with a good cry in the hallway and left to find our families.

I'd like to thank the pastoral care department again for providing us with the use of a family room adjacent to the chapel for our family to wait in. The OR waiting room only allows 4 family members to wait. We roll large, so that wasn't really an option. Throughout this entire process, they and the staff at the church have provided steady support and comfort.

Far and away the most difficult part of today was waiting on news. The OR called once to let us know that the surgery was underway, and then were supposed to call every hour to let us know how the surgery was progressing. After the initial "getting started" phone call which arrived 45 minutes later than expected, we didn't hear anything for over two hours. We were becoming concerned. We did all kinds of things to keep ourselves occupied and distracted. Kara's friends read her the latest People magazine and played with her hair. I took a long, repetitive walk through the garden around the hospital and read an article in Texas Monthly about a gamecock breeder. Nothing really helped.

Finally, without warning, our neurosurgeon appeared in the doorway to the family room. Needless to say we were terrified. We had been told the surgery would be six hours, and less than three hours in, here's our surgeon. We both braced ourselves and ordered everyone out of the room, where I think they almost collapsed in the hallway.

Fortunately, the surgeon was bringing good news. The surgery had gone quicker than expected. James' tumor was primarily composed of a soft tissue with the consistency of toilet paper, and it sucked right out. The doctor thought that he had removed most of it, and confirmed that its behavior was consistent with the two types of tumor we had been told it might be. Obviously, we're still waiting (probably 3-5 days) on pathology to confirm what type of tumor we're dealing with. Because of how soft it was, the tumor had come out quickly. Apparently, tumors that are fast and aggressive like James' are composed of a lot of necrotic (dead) tissue as they grow so fast they outstrip the available blood supply. The positive is that in James' case this quickened the surgery, because the dead tissue is soft. Most importantly of course, the surgeon told us James was well and would be returning to us.

Sure enough, an hour or so later we returned with James to our old home in the PICU. This time in a MUCH larger room with a view of something other than the wall of Parkland hospital (I-35 traffic is an improvement). James is quite groggy as this surgery involved more medication than either of his previous procedures, but appears to be recovering well. We have a post-op MRI scheduled tomorrow to check everything out, though our surgeon doesn't think anything will show up. We are thankful, blessed, and finally glad that something good happened after the steady drumbeat of escalating bad news last week.

I want to thank all of you for thinking about James and praying for him today. Today was the most important day of his life, and I believe your support eased his course. Kara and I are continually amazed when we hear how far and wide the network of support that you all have created for him is. Words cannot express our gratitude.

Day Four

This is James with his "menagerie" as I like to call it. His ever growing collection of soft, plush, and silky giraffes and monkeys- giraffes are growing into a theme of James'. He now has a giraffe blanket, a giraffe pacifier, his sophie the giraffe, a plush monkey, and his monkey lovey. No member of the menagerie is superfluous, and James is an equal opportunity chewer, thrower, and cuddler. He has the time to get to everyone, no one is left out. Ever since he's been little we've called him Jamesie the giraffe. Kara sings a little song with it. It's very cute. He has been in fine spirits today.

Today was our last day or relative calm. Tomorrow the second phase of our journey begins and James will have his first major battle with his tumor. We are confident in the doctors and the support staff here, and we feel good about our plan. While we're certainly nervous, anxious, and often overwhelmed, we feel like we've mapped our a plan and we're following it.

We had a difficult night. Part of the problem I suspect is that the cumulative effects of sleep deprivation are beginning to wear on Kara and I. The sleep we do get is restless, often interrupted, and rarely peaceful. Here's a picture of the "bed" that Kara and I have shared for the last four nights.

Ok so the bed is apparently at the top of the post. Picture it here. I'm not pausing to take the blogger tutorial.

You may have guessed, but the bed is not particularly comfortable. Last night we discovered that if you lift up the "cushions" to reveal some storage space you actually add approximately two inches to the total width of the bed. The difference was noticeable. In any case, although the floor is much less invasive than the PICU, the interruptions still almost always wake James up, which means it takes an hour or more to put him down. Last night, his heart rate dropped quite low in the middle of the night, prompting an EKG. The EKG showed nothing, so that's one less problem we have to worry about. The EKG set us back about 2 hours around 3:30. The staff is great, but no one likes waking up at 3:30 to get wires taped to them.

James is handling everything wonderfully, far better than we ever could have hoped. One gratifying thing today has been that his appetite returned in force. As he hasn't eaten in over a week, he really seems to be zeroing in on food, especially solids. This is a bit funny as James typically hates to eat and actively fights off spoons. Now he's excited and gets upset when you walk the food away from him. The downside of this is that once today James gorged himself and threw up- he was asleep and got woken up to check some vitals, and the combination of all that stimulus proved to be a little too much for him.

Kara and I did take the opportunity today to leave the hospital for a few hours. It was strange in many ways. Having been here so long and after everything life before seems distant, out of focus. We were surprised by how hot it was, even though logically we know that it's June in Dallas. We'd been dressing in jeans and sweatshirts. The hospital is cold. Driving was weird, it felt too fast. We went to lunch at Taco Diner. The food was good, but to me at least the atmosphere was weird. You feel strangely isolated, everyone is buzzing, fresh from church or somewhere else. The weekend is in full stride. I ordered queso when they came for drinks and got the check when they brought the food. It's hard to waste time now. We saw someone we went to college with who was praying for James. It was good to know that even in somewhere completely random like that, someone was thinking of and praying for James. We went home and took a nap, on a bed that felt like a pillow. I am glad we got out. We needed it. James needs us at our best, and we just can't do that if we're always here.

I know that we can't do this forever, both of us staying here all the time, but that's an issue we'll address after. We'll work out a schedule, we'll do something. Right now we both just want to be here, to take care of our boy until we know what his future looks like. I feel like every day we have less and less unknowns, our course becomes clearer.

As Kara discussed, we're now hoping that James' tumor is a blastoma, a less aggressive tumor and an easier variety to treat. Our doctor did the consent form for James' surgery- I know it's silly, but the fact that "death" was not listed as a complication somehow comforted me. The nurse offered brochures on each type of tumor James may have today and we turned them down. As we discussed earlier, there's no sense in worrying about what we can't control. Once we know which it is, we'll worry about that. Until then, worrying about both will not be helpful. This is strange for Kara and I- we're huge control freaks, micromanagers. Classic oldest children. One thing this experience has definitely proven is that any sense of control our actions might lead us to believe we have is purely illusory. As Kara said, all we can really control is ourselves and our reactions. Tomorrow will be the most difficult day of my life, but I am choosing to believe that it will also be the first day in my son's journey to beat his tumor, and to live the amazing life that I know he deserves. I look forward to one day telling him about all of this one day when he's older to let him know just how special he is, and how blessed I am to call him my son.

As always, thank all of you for your continued love and support. We could not do all of this without your thoughts and your prayers. We are grateful for everyone who has expressed such love for our son and for us.

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.