Tuesday, July 5, 2011

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.


  1. I read your blog daily. Your faithfulness is inspiring. You all are so strong! Keep fighting! I am praying.


  2. Reading every day as well to check up on sweet James. Thank you for the updates. I think it's wonderful that you continue try to find humor and joy in daily life, albeit daily life in a hospital for James' sake and to preserve your own sanity. Praying daily for healing for James and strength for you both.

  3. I don't know if you'll ever see this comment, but I wanted to say some things. I was James' newborn photographer -- when I first followed your blog, I didn't understand what these things meant, I felt your heartache on a different level. Now, after my own 2 year old has been battling a brain tumor, I thought of you all tonight and started re-reading. Your comments about neuros, dr Sacco did my daughters shunt revision (and what you said about him is spot on). It's so much more real. I think of you all often. Prayers never ceasing.