SALT

Salt. Sodium. Over the last 24 hours, sodium has been an obsession in our hospital room.

Sodium controls everything right now. Because James' sodium levels are low (122 for you medical people out there), he can't get an MRI done today. In order to get an MRI, James has to be sedated. Otherwise, his head would not stay still and it would defeat the purpose of trying to get the pictures of his brain. The anesthesiologist doesn't feel comfortable giving him general anesthesia until his sodium levels are in a more normal range.

James also cannot start chemo until his sodium levels begin to be in a more normal range also. Because of the drugs he will get his first round of chemo, he will need maintenance fluids running through his port at a high rate. When fluids go through your body that quickly, they can strip your body of sodium. Therefore, his sodium needs to be higher in order to begin.

Last night before James' seizure, I was talking to my Dad about how lethargic James had been over the last 24 hours. (My dad is a dermatologist which has been extremely helpful in understanding the medical terminology that is so very confusing!). He suggested that they take some blood and do a glucose test to make sure that James wasn't having some sort of diabetic shock due to the fact that he really has not substantially eaten anything in a week. When I went to ask the nurse about doing a glucose test, we discovered that no labs (blood work) had been run on James since the day we were last admitted, which was July 4th. It was July 10th. About 30 minutes before his seizure, blood was drawn. I am so thankful that he suggested this. By the time we got the blood work back, James was mid-seizure. The blood work showed that his sodium levels were low and therefore a factor in his seizure.

Sodium is a critical part of the chemical make up of your body. I had NO idea.

As I was writing this, the Neurologist fellow finally came in to see James. Today James saw the Oncology team, the Neurosurgery team, an Endocrinology team and the Neurology team. (If you can't keep them all straight, we have added the endocrinology team. The Endocrinologists are much like the Neurologists. A little bit of Asperger's perhaps, and definitely into chemistry and formulas. I asked him a question about whether what our next steps would be if a particular treatment did not work. He answered, "Of course it will work. This is the solution." I have found so many times in medicine that there is not typically one solution. So for him to say that he has the magic treatment is intriguing.)

All that aside, the Neurologist saw James and sent it to a CT scan- STAT! The CT showed that James' brain stem region is swelling, and therefore causing the seizures and his eyes to be static. For some reason his eyes bother me the most. I miss those beautiful, blue, baby eyes. Those eyes that stare at me and I know exactly what he is thinking. The past few days have been extremely difficult for me. Really, the last two weeks. Ever since his craniotomy, I have not seen my baby. And I honestly don't know if I am going to get him back. It scares the living daylights out of me to think that the James I have known and loved over the last 8 months might be gone. And although I will love whoever James is and who he becomes, I think I will always have some amount of grief if the "old" him doesn't make a return.

So we went straight from CT to our new room on D6. We were there about 10 minutes before we were told we were moving up to the PICU. James also has been having what we are calling "mini seizures" now. We, along with the doctors, aren't exactly sure what they are. Sometimes his heart will begin to jump (around 150-160 bpm) and then his face will turn bright red and blotchy. His arms will lock and he will stop breathing for about 30 seconds. He has been doing it all day. The first few times no one believed us. This afternoon, he did it when the charge nurse was in the room. She tried to describe it to the doctors also, but honestly, it's hard to explain. Then while we were on D6, James did it twice more with the entire 10-person oncology team in the room. They finally understood what we meant. We have been told that as soon as his sodium levels reach a more normal level, those will stop. I hope so.



So we are officially in the PICU again. Simon, our nurse from our last stay in the PICU, is back. He agrees that James looks far worse than the last time he saw him. I feel so bad for Simon- I have had a really rough day and he definitely got to hear my temper tonight. It wasn't directed at him, and he told me he understood, but I am really, really frustrated tonight.

I am ticked. I'm just going to say it. Today I am ticked. I would say I am something worse, but my friends at Baylor read this blog and the server's on campus will block my blog if I say anything controversial. Matthew and I have been telling the doctors for a WEEK that we thought that James was having seizures. When we did the EEG on Wednesday, it was only because Matthew and I insisted upon it. It only lasted an hour, and James was asleep during it. James also has some spinal fluid (CSF) on the back of his head. If I had to describe it, the back of his head feels like a jelly pack. We have been worried about this as well, and no one seems to be interested in our concerns. In the PICU they are finally somewhat concerned about this fluid collection.

I am also ticked that it took neurology until 4:30 to finally come and see James today after he had a seizure 18 hours before. I just absolutely think that is ridiculous. I know that they are busy, but the fact that as soon as the neurologist saw James he immediately thought we needed to be in the PICU. We probably needed to be in the PICU as soon as his seizure ended last night.

We also have been saying all weekend that James has been lethargic and not himself. Even at a new baseline of normal, this is not James. I am so mad that it took until Monday for something to finally happen. Nothing seems to happen in the hospital on the weekend. People do get sick on the weekend though. And I am mad that we have been in the hospital for a week and no one has been managing James' case to have caught this.

So now, if they thought they saw the Mama Bear come out a week ago, they were wrong. The Mama Bear is coming out in full force. It's not my normal disposition to be assertive. I'm pretty much past the point of being assertive. I'm even tempted to Med-Evac James in a helicopter to Philadelphia Children's hospital or Dana-Farber in Boston to ensure that James gets the best care. If I thought that it would make the slightest difference, I would. And that option is definitely still on the table, especially after today.



On a much better note- I have the sweetest friends. I'm in a MOMs group at church (much like MOPS if any of you do that). We get together once a month and visit and we have been starting to learn to knit. A whole host of them came up to the hospital tonight and delivered a labor of love- it's a prayer blanket that they have all been working on. It's the most beautiful blanket! They poured their hearts into it. They lifted my spirits, and I definitely needed them here tonight. Isn't it funny how people are put into your life at exactly the right time?? They are such sweet, encouraging women, and I don't know how I got so lucky to meet them.

I'm so sorry about all the medical talk. We know that several people read our blog now whose children are being with rhabdoid tumors, so we want to make sure that we have the medical information in case it helps someone else. There isn't a lot of research about this, so we really want to be able to document what is going on so that maybe in the future it will help another family.

Day Fourteen

Here is what I like to call pensive James. He is coolly regarding you as if to say "Hello. How good of you to drop by. Would you care for some giraffe?" For some reason he's always struck Kara and I as a particularly thoughtful boy. Even when he was very young, he rarely engaged in so called "normal" baby behaviors. He never napped much. He slept through the night early. His eyes were always darting about, inquisitively. He always seemed so engaged, so thoughtful. I know we're probably projecting a number of our own wants for James onto him, but we weren't the only ones who noticed. I'd like to think all of them weren't just humoring us.

Today represented an improvement over yesterday. I may be saying that solely because last night I went home and slept. After a few nights in the hospital, a few hours in bed can seem like lifetime. You emerge refreshed, coherent in ways you'd forgotten you knew how to be. I bargained with Kara that she'd take tonight if I did last night as James is NPO after midnight and therefore Kara's trump card, feeding, can't come into play.

Putting aside sleep, today went better because James got two tests in. The first, an EEG looked for seizures. We're still waiting on results. The second, an echo, looked at James' heart. I'm pleased to announce that another visit to the cardiac floor is not in our immediate future. I know it seems small, but yesterday we only managed to complete one test, the LP.

The other big event of the day was the move from C9, neuro, to C10, one of the oncology floors (the other is D6). Given that James' treatment in the future will primarily be through oncology, this made a lot of sense. James is not fundamentally a neurosurgery patient, he is an oncology patient. Sometimes I catch myself typing those words and I'm still surprised, two weeks, multiple surgeries and 12 nights in the hospital later. My son has cancer. It's true, but the shock remains.

Personally, I both shaved and got a haircut today. I look a little bit more like a human, and hopefully seem more respectable to the hospital staff. The neurology resident yesterday registered visible surprise when taking our history and learning that I was an attorney. Apparently I'm not looking the part nowadays. I'll have to wear a suit tomorrow or something and bring along a copy of the Civil Practice and Remedies Code or something. The neurologist followed up this unspoken surprise by telling Kara that he was glad I went home and got some sleep last night because "I looked a little rough."

The oncology floor rhythm is a little different, we're still adjusting. A different team of doctors means slightly different priorities- some items, like tylenol IV, are less of a big deal for the oncology people than the neuro people. It's a small thing but you notice the small things. There appear to be more oncology residents and interns than neuro residents and interns. You see more people, the floor is a little more crowded.

Thanks to my mother, Kara and I got out for a little bit today to grab some lunch and take care of the car. In my haste to get the battery fixed the other day, I apparently rushed the crew too fast, because they wreaked havoc on the sensors. The car would not shut up. We took it to the closest garage and they fixed it free of charge. Lovers Lane European Automotive. Good people. We grabbed lunch nearby. It's funny how before we used to hem and haw about where to go to dinner. Old worries just can't measure up. We turned into the first shopping center and went to the first restaurant we saw. There was no deliberation. We have gained perspective on our decisions. Dinner locations matter less. Menu selections rank still lower. We never ask for more time to look at the menu now.

James only has a few more tests to undergo before we can start treatment. A spinal flow study and an audiology test. Both require sedation, so they'll need to be separate days. We want to knock them out this week. Unfortunately the remaining tests, along with the fact that James continued to throw up whenever his zofran begins to wear off (twice today) means that we'll be delayed until the 18th. The oncology team seems untroubled by this delay and does not believe it will have any impact on James' prognosis. We take comfort in that, though we're disappointed, we also want James to be strong and ready to go when he starts treatment, rolling one hospital stay into the next is not the answer.

We're taking family pictures today (hence the hair cut and the shave) and even though the first round will be at the hospital, we're excited to dress James and to capture his essence. This probably means lots of pictures of us jumping and acting like fools in order to get him to laugh (for some reason I imagine him cackling and thinking "Dance puppets dance" whenever we do this) but we'll take what we can get.

Kara's making a cape for the photoshoot- because my son is a superhero, you see. I never had any doubts. The cape meant a trip to Michael's, where the staff treated Kara quite poorly. I'll let her elaborate, but I'd take a moment to advise the retail staff of the world not to rouse Mama Bear.

Aside from the two vomiting incidents today, James has been playing and talking most of the day. We're glad to see him talking- it's the surest way to tell he's feeling better. He's working on words, but to biased ears he can say da-da and ma-ma though I'm still not sure he means to. In addition to hsi giraffe paci, he now also has a monkey, lion, and puppy paci. The toy buying has gotten a little out of control.

As always, thank you for your thoughts and prayers. Especially in this time of uncertainty as we try to figure out what's going on with James, it is a great comfort to know that so many people are supporting him.

Day Thirteen

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

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

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

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

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

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

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

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

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

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

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

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

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