Day Nineteen

Kara ably summed up the day. Returning to the PICU feels like we've come full circle. Our nurse is the same- we've stayed in the room next door before, and the one down the hall. Our favorite fellow is back with us- and we know the sex of the baby he's having in a few weeks. Any day now I suppose. It was three weeks two and a half weeks ago. We miss the in-room bathrooms from the floor but welcome the heated blankets (which we horde). We still have no idea what the future looks like.

James' sodium levels are improving. We finally got a chance to see his CT scan and the swelling which is concentrated in his brain stem region is obvious. This region coincides with where James had both his surgery and the location of his tumor, so we suspect that some correlation exists, though it may not be explained. Dark, empty spaces mark the ventricles on the scan. James is missing one- a sign that the brain has swelled into the space. This is likely attributed to the sodium deficiency, but the sodium deficiency itself remains unexplained. It's a common problem in brain tumor patients, but we take little comfort in that.

A direct correlation exists between the number of doctors you see and the level of concern about your case. Today we were shooting for the trifecta. Or whatever you call more than a trifecta. Quadfecta? The endocrinologist, with his merona tie (props for savings) flipped inside out our entire conversation and his hands tucked in his pockets, did resemble the neurologist. He also loved to pontificate on hormones, which must come in handy in his line of work. I'm glad, because as the day wore on, our 20 minute lecture in anti-diuretic hormone production and impact came in extremely handy. I even supplied the name for ADH for one of the oncologists at one point. He had a single groupie, the handshake and listen variety.

I am pleased that once neurology showed up they acted promptly. I am less pleased they showed up less than promptly. Although he said he'd heard of the seizure before he had not heard of James' lethargy, which concerned him much more. This is frustrating because it reinforces the feeling that you, the doctors, and the various specialties are playing a game of telephone in which your words, the residents words, and the nurses have to be filtered through several layers before they get to the specialty who needs to make the consult. When they do, key pieces, like lethargy, may be left out. The neurologist gained a fresh sense of urgency when he learned that but we had to get our intern to call him twice to tell him about it. Our intern's been very good to us, and a useful sounding board for our concerns, which have multiplied dramatically over the last 24 hours or so. She's an ally. Our neuro-oncology crash course took a detour through endocrinology, with a touch of nephrology for good measure.

James gets good care on the PICU, but he needs good care now. He's not stable enough for anything else. We're supposed to be starting chemo and James can't even stay on the floor. In addition to the complications of chemo, our move is made worse by the fact that so many of the creature comforts we acquired on the floor- from the air mattress to the less frigid thermostat, aren't options here.

James' appears to still be having seizures- little ones, lesser ones than the huge one last night. His pulse shoots up and he'll have apnea spells. It does seem to be getting better. We're hoping that it is just the sodium- because we can certainly fix that. I worry it's not. But I can't go there right now.

I am trying to stay positive. To locate the good. James grabbing my finger still. The CT scan not showing any spread of the tumor. I'm naturally a cynic- but ironically this process has made me much less cynical. I'm not sure I'd survive if I kept at that. Thank all of you for your support today- it was a long day, and we needed every bit.

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.