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 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.

Surgery Details

James is scheduled for surgery beginning at 7:30 a.m. tomorrow morning. It will take about an hour and a half to do everything with anesthesia, and then the actual surgery part should begin around 9:00 and last at least 6 hours, but possibly more depending on what they find when they get in there. Dr. Sacco (our neurosurgeon) said that there are 2 types of tumor that it could be. One is a rhabdoid and the other is a pineoblastoma. The two look similar and the only way to tell them apart is to do gene testing on the tumor once its out. They have very different treatment regimes, and the rhadboid is much more aggressive. Once again, that is all we know because we are not googling anything! Once we know what type of tumor we'll learn about that one. So far, we feel like we've had a crash course on neurology!

Please pray that the tumor is a pineoblastoma. We would be so grateful for any treatment that is less aggressive! We will do chemo/radiation at Children's. They have told us that we will be in-patient at Children's for several weeks until they see how James tolerates the treatment plan.

The hospital has a Tumor Board that will review all of James' medical history and pathology reports. This Board will determine his treatment plan. The Board is comprised of our neurosurgeon, our oncologist (who we will meet tomorrow evening) and several other neurosurgeons and oncologists that make a joint decision. They typically meet on Thursday mornings, but I am pretty sure they re-convene if we miss that one on Thursday.

Our oncologist will be Dr. Laura Klesse who only deals with pediatric brain tumor oncology cases (can you believe how specialized that is?!). She will be coordinating the chemo or radiation and will manage James' care after the surgery. We've heard she's great so we are excited to meet her. Our Pediatrician spoke with her several times this weekend and Dr. Hubbard thinks that we will really like her.

We anticipate the surgery lasting until at least 5:00 p.m. tomorrow evening, but possible longer. James will go straight from surgery to the PICU neuro-trauma unit where we were Wednesday- Saturday morning. Tuesday morning he will be sedated again for a post-op MRI. If all goes well, we will be back on the Neuro floor (9th floor) at Children's on Tuesday afternoon.

Thank you again for your continued prayers and support. We are so blessed to be James' parents and are so thankful that he has so many people that love and support him. Thank you for blanketing him in prayer. We love you all.

How the Heck we got here

(James at 2 weeks old :) )

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day Three

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

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

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

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

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

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

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