1 Million

At some point over the weekend, this blog hit its 1 millionth page view. That's really something.

It's a bittersweet achievement. Obviously, my life would be better if this blog did not exist. If this blog did not exist, that would have meant that no tumor existed for James to beat. It would mean he never got sick, that I never wrote a word about it, and that I could see him right now if I wanted to. 15 months and 2 days old, a bouncing baby transitioning fully into toddler mode, prancing down the halls and testing the baby proofing around the house. Bumping into the plastic edges Kara wrapped around the hard edges of the furniture and the sharp corners of the fireplace. Struggling against the protectors she put in each and every outlet. We took them off after he died, and the plastic pads left just a bit of residue on the painted brick of the fireplace, like the sticky film you can't quite get off when you peel a sticker off your car window. I keep expecting it to fade, and can't decide if I really want it to or not. I wanted to see him walk so badly that the lingering refuse of our preparations can almost trick me into thinking I did. Perhaps, I muse, he's just off playing in another room, or playing on the toy slide I bought at the garage sale down the street. It was too big to fit in the car so I dragged it down the street to the house, too lazy (and too incompetent) to disassemble it and pack it in. But the slide isn't there anymore either.

Kara started this blog. I still remember when. It was our second day in the PICU. We'd just learned about James' tumor, but didn't know what kind of tumor it was yet. Rhabdoid was an unproven hypothesis. She didn't tell me about it, she just started it with no entries. The lead photo was a picture of James from the zoo, perched on an old jeep, his hands banging on the spare tire mounted on the hood. It was from our second and last trip to the zoo. I was not in a good place that day, the world was spinning. I remember liking the title she chose of James beats the tumor, because it made me feel more like we had somewhere to go, somewhere that was not the cramped PICU room. I wrote the first entry on no sleep and with no plot, walking down the timeline of the hospital so far, not sure what else to do. I called it Day 1, because it felt like all the days before had been irrelevant. It still does. If Kara had not started the blog I never would have done something similar. In fact, I probably would never have said anything at all about any of this. I'm not big on sharing, but I took some kind of comfort in the anonymity of the blog. Once I started writing it felt good to put all of that pain somewhere other than me, innocuous words glowing softly in the light of a laptop screen instead of simmering in my head, festering into doomsday scenarios.

Though I didn't know it when I wrote that entry, I'd write in the blog every day between then and the day of James' funeral. In a way, I'm glad I didn't know it would barely be three weeks later. I don't think I could've handled knowing. I wrote late, after the doctors finished their interminable and intermittent rounds, relying entirely on Children's spotty wireless connection to upload my unedited thoughts. Going through them now I notice that typos abound. Kara wrote too, with a style completely her own. As I've said before, Kara and I are opposites. I looked forward to her posts, because I always felt better when I read them. I still do. Though you never really sleep on a schedule in the hospital, writing became my way to wind down and end the day. Once I wrote it, I could clean the slate and start filling it up with thoughts for the next day. It was a healthy catharsis. I'm not glad that this blog exists, but I am grateful. I needed it.

After he died, it became a place to vent and reflect. To talk about the grief of losing him and how that felt. We wrote less, and the subjects became grimmer. Graveyards and funeral homes replaced Disney and babies. A place to vent about all that was and never will be. Still, you kept coming. Thank you for that.

I do not know where you all came from. I do not know how all of you got here. The e-mails and comments indicate you are international and local, people I know and people from places I've never been. Scotland, Australia, Argentina, Canada, Puerto Rico, and more; scores of states that we have no ties to. I don't know who you are but I'm glad you found James. It has been overwhelming to see the feelings he inspires in other people. We have been blessed. With James gone, the way people feel about him and the way they remember him has become very important, in many ways, it's his legacy. I've heard the phrase that someone's death was "not in vain." I don't believe that when it comes to children. Children should not die. Every death is a waste of a life over before it began. I do believe that what you do with someone's death is important. Their death might always be in vain, but that does not mean that your response must be. They don't have to die for something for you to do something about it.

Thanks to this blog we've been able to do a lot of things to keep James' memory alive, and hopefully one day to help ensure that there are less memories made like his. We've raised $25,000 for James' fund and rhabdoid research. We were able to get Jamie the Giraffe named in his honor, and in doing so were fortunate enough that the person who won the family trip for picking the name chose to give it to Make a Wish Foundation. It's been humbling to see the things that people have done for James. Thank you.

I try- but do not always succeed- to thank you whenever I write here for your thoughts and prayers. They mean a lot. No one gets through something like this without a lot of support, and we have been very fortunate to have a lot of support. I have never felt like no one cared. So thank you for coming and thinking about us. Thank you for getting to know James.

Birthday

I meant to post this last week. I did not. Here you go.




It wasn't supposed to be like this. There was supposed to be more. A party, a cake. One James attended not in his 37th week but his 52nd, full of life and vigor. He was supposed to smile, play, and even if he didn't know what was going on, know it was all about him. He never stirred during the party we did get to have for him, poor baby. I often wonder when the exact moment he slipped away from our being able to reach him, even though I know it happened slowly, with no anticipation. I believe he could hear us at the end I just wish he'd had a way to let us know. Pouring over my pictures of him I stumbled upon what I think is the last picture I have of him playing. He's munching on a mum mum bar, his favorite, back arched in that typical way of his, always striving to move more, do more, and see more. He died a week later.

I wonder what he would have looked like, if his hair would've gone blond or settled in the middle. If eyes would retain their vibrant blue or shift to another tone. If his fangs would've become crowded with more teeth around them. I have so many "what ifs" that I cannot begin to list them. Each moment represents an independent one, all dependent upon the same event. To use a legal term, they assume facts not in evidence. There is no evidence of my son now, only what I speculate might have been. It is a poor substitute, because James from the moment he was born was a terrific surprise to me. I was never sure exactly what fatherhood entailed and if I am honest it did not come to me immediately like motherhood did to Kara. It took time for the reality of it to sink in, for the love I felt for my son to translate into a fundamental change in who I was. Just as I was getting the hang of it, I stopped being a father. I don't know what to do with that. I sympathize when others talk about their babies but the experiences I can share run out before walking and talking.

Today brings everything to the surface. Thoughts that I might otherwise keep at bay with a few more hours at work or a book come rushing to the foreground, because I am not doing what I should be. Looking at the difference between last year and this year invites a comparison that cannot be avoided. At 10:20, James was born. We were in the ER and I was wearing scrubs (I still have them, I stole them as a memento from the hospital). Kara was getting her second hit of morphine and ascending to a higher plain, and the nurses dragged James over to weigh him. He was screaming, just like he should've been, a relief after all the trouble they had keeping his heart rate steady. All anyone could talk about was his hair, thick and matted onto his head. He looked just like Kara, her nose and cheeks. I wanted to hold him but they kept running tests, so I didn't get a chance for a few minutes, minutes I spent anxiously videotaping, sure we'd share it with our embarassed son twenty years later. He was perfect, just as he should have been.

This year, 10:20 was quiet. No screams, no babies, no anything. Just more stillness. You forget how loud babies are, as they have no sense of propriety. They are delightfully uninhibited and free as adults never are to scream, cry, and laugh, often all at once. James was just like that. In his absence, the silence is all the more obvious. Stunning, even.

So what did I do? We went to a DAYL event. I wanted to stay longer but I couldn't. It was sweet of them to honor James, and the event itself was a lot of fun. I encourage all of you with families to go to the zoo, it's a great place to take a family and there's a ton of things to do. Jamie is growing, though she has yet to master the art of eating grass- it's awkward enough that you understand why giraffes prefer leaves. I'm glad the DAYL is doing more family stuff, I think it's healthy and lets you get to know people in a different setting. I went to the cemetery, of course. Balloons fluttering in the wind wishing a happy first birthday to a patch of dirt now nearly completely covered in grass. Despite myself I worry between the tears what will happen when I'm not around to clean up the balloons after they deflate. I cannot tolerate the idea of his grave appearing uncared for. I care. It is peaceful as always, but the stillness serves again as a reminder of how loud it should be.

Some days are better than this. I can get busy enough on something or get enough work in front of me that I'm occupied enough that I can push it to the margins. Some days I remember more of the good things, and the rest seems less important. I can function, laugh, joke, and enjoy life. Today was not one of those days. I couldn't function, couldn't tell you what I worked on all day the day before on or even let you know what I planned for dinner. I think I tried to put on a good front. I have no idea if I was successful.

It's annoying because I don't want James' anniversaries to be marked by loss. I don't want to look at the 16th every month and do a mental calculation of how long it's been since he died. I don't want to take each 29th and do a mental calculation of how old he should be. I don't want to dwell on it. I want to think of as he was- the joyful little boy who lit up every time you walked in the room, and couldn't get enough being thrown in the air. I want to remember his little cackle when the dogs played in front of him, not the labored sounds he made as he struggled to breath near the end. I don't want that to be the most important thing about James, because there are so many more important things. His smile was worth all that alone. I don't always get what I want though. Sometimes I can't help myself, even though I want to. Sometimes I can't be more than mad. Maybe tomorrow. Maybe next year. But I'm not giving up on someday. James wouldn't.

Happy Birthday son. We miss you.

Thank all of you for your support this week, it meant a lot.

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.

Day Six

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

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

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

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

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

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

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

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

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

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

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

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

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.