Thursday, June 30, 2011

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.

The Roller coaster ride

(James in early March)

I know that Matthew posted about yesterday, but it's 4:00 in the morning and I can't sleep because my thoughts are taking over. I think I am still in shock. At some point I keep thinking that the shock is either going to wear off, or this whole thing is going to be just a nightmare and I'm going to wake up. Neither one of those have happened yet.

Yesterday started out being a good day. Dr. Sacco and his groupies came in early and told me that they were going to take the EVD out in the morning. He had about 10 groupies with him instead of his usual 2-3. They all follow him along like he's the Mother Duck and they are his ducklings, following him in a row wherever he goes. The other day I heard him pass our room in the hallway. He was saying to them, "Now let's go to the office and talk about what you have learned today." For some reason it cracks me up. Probably because he said it very kindly to them all while wearing one of his infamous suits. I call them Pimp suits. Because seriously, no one else could pull off these suits.

My friends Cathryn and Kristin stopped by to see Jamesie. They got to see him without all of his tubes and wiring for the first time! The nurse even said that he might even be able to put clothes on later in the day. I was so excited that I started looking through all the baby clothes that I had brought.

I thought that once the EVD was out, James would begin feeling so much better. That still hasn't happened. He starting throwing up, much like he did before he was diagnosed. Honestly, I panicked. After 3 brain surgeries, I thought that the vomiting had been taken care of. And then I got mad. I mean, could the poor kid just catch a break? Could he just have one day where he felt well?

They are watching the fluid around his brain. If it doesn't go down, they will have to put another drain in (I'm not sure whether it will be internal or external. I didn't even ask.).

When Dr. Klesse walked in, I was just expecting her to talk about the surgery. But when I saw her, I knew that it had to be a rhabdoid. I had started preparing myself that this was the most likely option. I thought that even if it wasn't one, it would be much better to be relieved that it wasn't. I do really like Dr. Klesse though. By the end of our almost hour long discussion, she was crying with us.

Like we've said along, we are going to be positive about this for James. But today it was hard to be positive. Today was a minute-by-minute kind of day. We had to sit and brainstorm what the positive was. Fortunately Matthew's dad, Jim, was still in town and came up with some good positives. I am so grateful that he was still in town. He is a calming presence, and we desperately needed him today.

When Dr. Klesse told us that his prognosis was 50-50, it was actually better than I had been thinking. If you google the prognosis on a rhabdoid, she said that most percentages will show you much lower. But that takes into account that there was no treatment 5 years ago, and we are going to be doing a very aggressive and progressive treatment. I am SO thankful that it is 2011 and we have a hope and a treatment plan. I can't imagine what families must have been going through several years ago. To be told that there is absolutely no treatment plan would be devastating.

It's going to be a long year. I think we will go through the stages of grief and sometimes we will cycle back through those stages. I think today I have been through all 5 stages and have ended up back at stage 1. I spent several hours today begging God to give the tumor to me instead. James doesn't deserve to have to go through this. But the truth is that no one does. No one gets cancer because they "deserve" to, no matter what they have done in their life.

Random things have upset me today. I know that he is going to lose his hair. I have known that for days now. I think I'm ok with that. Tonight I got to hold him on the couch for the first time in a long time. He snuggled up on my chest and laid his head in the little space that his head so perfectly fits. It's the spot where he normally naps (I know, bad parenting 101- I've never made him take naps in his crib. I almost always let him sleep on my chest. I don't regret that decision for one minute.). Parts of his head are shaved right now from the various incisions throughout his head. He has so many at this point, including a large, hook-shaped one in the back from his last surgery. The thing that made me start to bawl is that his head doesn't smell "normal" to me right now. We haven't been able to wash his hair in over a week. It's had several washes of anti-bacterial solution and iodine, but no baby shampoo. Oh how I miss that smell of freshly-washed Jamesie hair! I miss being able to wash his hair and comb it afterwards. I miss being able to give him a bath.

I miss that our typical songs and dances don't make him smile. James is such a happy, happy baby. I have this song that I sing to him when we do diaper changes. It's called "Baby legs" and its sung to the tune of "Baby love". It came about during the winter when the only time I got to see those adorable baby legs was when I would take off his tiny pants for a diaper change. He has this one tiny roll on each thigh- they are the only rolls on his whole body! Normally I sing the song and wiggle his legs in the air and Jamesie laughs and laughs about his baby legs. I so desperately want the baby legs laugh to come back.

I know we are in the best possible place for James, and under the care of terrific doctors. I know that God is the Great Healer, and I know that he can work a miracle through James. I believe that God is 100% in control of James' life, and he knows how all the puzzle pieces fit. I am thankful that on a day like today I don't have to be in control. I am thankful there is a treatment available. I am thankful that we live in Dallas, and therefore James will get to be at home in between his treatments and in his room that he loves. I am so thankful for my church family. I need to write an entire blog about how amazing they have been. I could probably fill an entire book at this point actually. I am thankful for friends that give me faith when I doubt. I am thankful for family that turn upside down their lives to support us.

I know a lot of you keep telling me how strong I am- let me tell you that God has put amazing people in my life to journey with me. I am only strong because I have thousands of you lifting me up. There is nothing in this strength that comes from me. All glory belongs to God because he has truly blessed me with everything that I need. Everytime I needed to hear something one of you, sweet friends, has sent me an email, text, shown up at the hospital, phone call and said exactly what I needed to hear. I don't believe that it is a coincidence.

So I am preparing for the roller coaster ride of a journey we are about to embark on. I know we will have highs and lows. I will rejoice in the highs and the lows, because I am thankful that we have a treatment plan and that we have been given the opportunity to fight. That tumor just better watch out because he was one angry Momma coming after him!

Love you all.

Wednesday, June 29, 2011

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.

8 months old

Sweet Sweet Jamesie,
I cannot believe that you are 8 months old. It seems like yesterday I found out that you were going to exist! I remember the day your Daddy and I found out about you- it was Valentine's Day 2010. How appropriate that day is now, as you have shown us what it truly means to love. The moment I found out that you were you, I loved you. I was absolutely scared- about 6 months before Mommy had been pregnant with another baby but we lost that baby very early in utero. I desperately wanted to be able to see your sweet face. How could I have ever guessed how absolutely precious that face is? One of the first things I said to you after you were born was "How did Mommy get to so lucky to get the best baby in the world?" Those words have been true every second, every minute, every day of the last 8 months.

We called you "Bean" for the first 20 weeks in my belly because that's what you looked like the first time we saw you! Even as you grew, the name stuck until we found out that you were James! Mommy was the only one who guessed you were a boy, and I was right! You have had so many nicknames over the last 8 months. We called you "Baby Bird" because everytime it was time to eat you cocked your head and opened your mouth! I never guess that I would still be nursing 8 months later- but you it. You love it so much that you refuse to take a bottle!

We also call you "Baby Bear" because of Mommy and Daddy's obsession with all things Baylor. Between the 4 degrees and Mommy working at Baylor for over 3 years, what else could we call you? And finally, we love to call you "Jamesie the Giraffe". There is a Raffi song called "Joshua Giraffe" that Mommy listened to when she was little. For some reason it has just stuck! Now we sing "Jamesie the Giraffe" to you all the time. And although you are a giraffe, you will always be the King of our Jungle!

I felt like my life finally made sense the moment you were born. I finally knew my true calling. It was like Heaven opened and God told me my purpose was to be your Mommy and raise you to love the Lord. I knew you were destined for greatness. You have these piercing eyes that seem so much wiser. I thought that as a newborn you were so much more alert than the other newborns. They were napping for hours and you were taking 30 minute cat naps a few times a day!

They say that when you have a child, it's like you are allowing your heart to travel outside of your body for the rest of eternity. Baby boy, you not only have my heart, but every fiber in my body. Because of you, I am forever changed.

James, you are so Special. I don't know how else to explain it. I truly believe that God is using you to minister to so many people. Hundreds of people are praying for you. Maybe thousands. I have no idea. But I do know that you are the most Special little boy. When you were 5 and a half months old, you and Mommy were shopping at Central Market (like Whole Foods). I was checking out and you were sitting up in the seat. I turned around and a lady had picked you up out of the shopping cart and she was holding you! I tried, very calmly, to ask her to give me back my baby. She explained that she was a grandmother and just "had to hold you!" At the time I was so scared. Looking back, I understand her. I have the opportunity to hold you every day. If I saw you, I would naturally open my arms to take you in. You are that special.

Jamesie, I cannot wait to see what the next 8 months, 8 years, and 8 decades have in store for you. I think about the blessing you have been to so many people at 8 months old, and I cannot fathom what the future will be like. I know in about 4 years you might want to go to the store dressed in your Batman cape and Dinosaur slippers. I promise to laugh and encourage you to be yourself. I know that in about 12 years you will be mad at me that I will not allow you to play football (or any other contact sport for that matter!). Please know that it is my desperate love for you and not out of any "meanness" as a Mommy! And in about 30 years you will marry the love of your life. Know that I have been praying for that special woman since the day you were born. I promise to be an encourager of your love, and will gladly let her become the most important woman in your life.

But remember this:
I'll love you forever.
I'll like you for always.
As long as I'm living
my baby you'll be.

I love you sweet boy.

Tuesday, June 28, 2011

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.

MRI Results

The MRI results came back this evening and they are great! Dr. Sacco feels very confident that he got out about 95% of the tumor. The remaining 5% (which could actually be less!) should be able to be taken care of with the chemo/radiation treatments that we will do next. We are SOOOOO thankful for this amazing news. I can't tell you how much of a weight has been lifted off my shoulders!

We have moved down to the floor now, and will stay here until further notice. We should meet with our neuro-oncologist tomorrow to confirm that we won't need anymore surgery in the near future, but we feel strongly that she will agree with Dr. Sacco. The next step is waiting for the pathology results that will most likely take until the end of the week!

At this point we are really living day-to-day. Sometimes it's hour-to-hour. We aren't looking at the big picture that all of this means, because honestly it's just too overwhelming. Right now we know that our sweet boy is doing well and is happy. And that is all we can ask for today!

My dad got James a portable dvd player that we can use in the hospital and when we go to chemo. James has never watched movies before, so I wasn't sure how he would react. Our pediatrician was here the other day and I had turned it on for James to watch Cars. I started apologizing to her because I know that TV watching is terrible for your child. She told me that throughout this journey I am going to be doing alot of things that I never thought that I would do as a parent. I need to do whatever I can to get through it, and she thought the dvds were a great idea.

Speaking of dvds, does anyone have ideas about how to entertain an 8 month old during chemo treatments?! If you have ideas, I'd love to hear them. So far I have movies. That's the only thing on my list!

And finally, dear friends, let me thank you for everything. I know I sound like a broken record, but I could not be going through this journey without the wonderful, caring, supportive friends and family in our lives. I truly feel that prayer lifts us up and carries us when our hearts are too heavy to hold. Thank you for sustaining me and breathing life into me when I wasn't sure I had breath left. There is not an hour that goes by that I don't reflect on your kind words of encouragement. You are such a blessing to me and I am so very grateful for you.

Still waiting on the MRI results...

We are still here waiting for the MRI results from today. James was scheduled to be in the MRI at 90:00 this morning, but then we were bumped for several other pressing cases. We are just thankful to be the "bumpee" rather than the "bumper"! It breaks our hearts knowing that other families are more critical than James and need to go first though.

So James went back for his MRI around 1:30. We got to sit around and chat with his sweet nurse, who I got along with really well! Every nurse at Children's has been amazing. I cannot say enough good things about them. They have truly been so supportive and positive, and we cannot have asked for a better experience.

James came back around 3:30 from his MRI and we are back in the PICU now. We were hoping to have moved down to "the floor" as they call it here, which is the 9th floor neuro floor. We are so fortunate that they let us keep all of our stuff (which is alot, it seriously looks like we have moved in!) in our room on 9 so that we haven't been dragging it back and forth. I can't tell you what a blessing that has been! The room on 9 also has a shower/restroom in the room which makes a big difference from the PICU.

So right now we are waiting for neurology to read the MRI and release us to the floor. It's hard waiting- we are trusting in God and the physicians, but we are anxious to know! The MRI is really just a benchmarking tool today. It won't change our treatment plan, but if there is a section of tumor that was left they will go in through James' original incision and remove that portion. We would really love for James not to have to go through another brain surgery! 3 procedures since Thursday is enough for us.

We will update when we know more....

As always, THANK YOU for your continued prayers, thoughts, love and "good vibes". :) We appreciate them so much!

Monday, June 27, 2011

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.

Sunday, June 26, 2011

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.

Saturday, June 25, 2011

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.

Friday, June 24, 2011

Day One

From Matthew:

Before I forget all of this I want to write it down. The last 48 hours have been a whirlwind. Wednesday evening we took our son to the hospital, to deal with what we assumed was some kind of superbug.

Tonight, our son is in the PICU at Texas Children's. Today he had brain surgery, the second neurosurgical procedure he has had in as many days. Kara and I have slept less than five hours in the last the past two days, pockets of one hour naps sprinkled through the night and the day. Things still feel unreal, like I'm dreaming and someone, sometime, is going to wake me up.

So I wanted to write down the timeline, to keep things straight.

6:00 pm: Kara finishes at the peditrician's. James' sickness is "unusual" so she's sending us to Children's for observation. No one is worried.
7:00: I arrive at Children's after stopping by the House to pick up some things. I go to the room but no one is there- they'd assigned one and put it in the system before James and Kara got there, I go to admitting and of course just miss them headed in.
7:30 We meet up in the room.
8:00 James is seen by the intern. The intern notes that James appears to have a stiff neck. We are surprised, and worried he may have meningitis. The resident mentions hydrocephalus as a possibility. We're upset, but it's a long way away. A plan is made to send him for a CT scan.
8:20 We go and get the CT. We're escorted by two paramedics who basically walk after us since I'm carrying James. Kara jokes that they should be called "ambassadors" of the hospital. They say we made their day. Everyone is laughing.
8:45: James gets his IV. The IV team at children's is efficient and very nice, we're pleased, as he had a difficult time getting an IV a few days before at Medical City. James still has that IV.
9:15: The resident comes in and informs us that James has hydrocephalus. We are very concerned, ask a lot of questions. The idea of a shunt in his head forever seems daunting.
9:45 We meet with the neurological PA who talks to us about his scan. Compared to a scan he had 2 month ago, this one is not good.
10:15: The neuro PA comes back to inform us that James' scan shows a "mass" of cells, which may be nothing, and may be a tumor. We are devastated, but we pray for mere hydrocephalus. Superbugs are a welcome, even preferred cause of anything.
10:45: Per the neuro PAs instructions we move to the neurological ward.
11:15: Orientation finishes in neuro. The PA comes back to talk to us about hydrocephalus and to check James out. His heart rate stops dropping, below preferred levels. The PA orders us to be moved to ICU.
11:35: The PA talks to us about possibly putting in an EVD (external ventricular drain) as a temporary measure to take care of James' hydrocephalus, mentions we may have to of conditions worsen.



12:10: We arrive in the PICU, our new home. We meet our RN, who has been with us since and is fantastic.
12-9: We enter into a holding pattern in the PICU of uncertainty- waiting to see if James will become critical enough to justify the EVD. James is fussy, and we now know, in a lot of pain. We never know exactly when anything is happening as we're holding until the morning. We know that the results of an MRi will be critical to determining our future course. We pray. We hold James' as it's the only way he will stop crying. There's a need to get blood and he won't bleed enough. We see our friends from the IV team again who put in another IV. They wonder how on earth we went from general admission to the PICU in 4 hours.
9:00: We see our neurosurgeon and his team. The explain that the plan is to put in the EVD and then proceed with the MRI. The EVD will buy time to consider the next steps. I comment on his suit, which is a very expensive and very aggressive union of pinstripe/plaid. It looks like fun.
10:00: James gets a breathing tube and the EVD procedure begins. I want to stay to watch. it is hard to imagine leaving him, even though I know I am powerless. I am terrified something will happen while we're gone. They kick me out. I'm thankful.
11:30: We return. The EVD procedure went well and James' pressure is improving. We are thankful and wait for the MRI.
12:15: James goes to the MRI. The staff is wonderful and he seems well. He has to go under for the MRI in order to keep him still.
1:30: After a hurried (literally- we ran from the cafeteria back to the room) lunch, we receive a call that the MRI team has ordered additional pictures of James' spine. We are not encouraged, and afraid of why they need information.
3:00 James returns from the MRI.
4:00 Our neurosurgeon returns. The film he puts on the screen is entitled "8 month old with hydrocephalus and brain tumor" Kara immediately asks about the tumor. I know I asked questions but I remember very little of the next few minutes. I couldn't believe it. I remember sitting at James' bed and holding his hand, hoping we'd wake up. The plan is to treat the ydrocephalus with a ventriculostomy and get a biopsy.
5:00: Kara, who is infinitely more wise than I, institutes a no-crying, all positive attitude in James' room. It is ok to cry. But outside. James is extubated, and seems more himself. He is visibly more alert with the pressure relieved.
6:00: I lock myself in the bathroom and cry uncontrollably for ten minutes straight, curled in a ball in the corner. I wonder when we wake up. I curse god, myself, medicine.
8:00: James starts to smile and play. It is a HUGE relief to see him so happy. He is such a joyful boy, he always has been.
9:00-12: James takes a well deserved nap before remembering that he is awake, and for the first time in who knows how long, not in agonizing pain.

12:00-8:00 With limited interruption, James plays. Even though we are exhausted, it is amazing to see him so happy. He's grabbing at his lines, very disruptive. We don't care. We're relieved to have our wiggeworm back. The nurse says that EVD patients don't often behave that way. As always, James is a trendsetter.
8:00: We hear that the surgery will be at 9.
9:50: Anesthesiology arrives, a sprightly grandmother who likes to share, which is nice.
10:10: The surgery is waiting on consent.
10:50: Our neurourgeon arrives to provide consent forms. We listen. They take James back and we follow as long we can. We kiss him goodbye and save our tears for when he gets rolled away.
11-2: We wait on the results of the surgery. The OR calls several times and lets us know what is going on. The surgery appears to be proceeding smoothly.
2:30: James returns to us in the PICU, tired and a bit groggy but otherwise well. His cranial pressure is much lower. Our neurosurgeon provides his report- the surgery went well, the ventriculostomy was an apparent success and they obtained a biopsy. The biopsy confirms that the tumor is not one which can be treated with merely chemo or radiation and will require a surgery to remove it over the weekend. It is a blue-cell tumor- either a raboid (sp) or a blastoma or some sort. We expected this, so much of the shock of yesterday is worn off. We try to have faith in our plan, god, and our little boy.

We are exhausted. Starbucks is a constant companion. There's one in the building. I cannot express in words how grateful we are for the loving and faithful support of everyone. I never knew how many friends we had until now. James is loved and blessed in more ways than I can imagine. Thank all of you, always.