The unlayering of knowledge and understanding that comes with the process of an unfolding medical situation is distressing, frustrating and immutable. The challenge presented itself from the first moment when Dr. Michelin in the Danbury Hospital emergency room said, “it’s not good news.” A second instance was when Dr. Wisoff revealed that the tumor had metastasized and was showing up in scans of Colin’s spine.
Individual pieces of information that reveal a dramatically negative change in the situation (or at least a change in how we understand it) are rare. An abrupt shift like that drops the bottom out of the world. The heart forgets to beat, lungs forget to expand. But even this fails to turn back the clock to a time before the truth revealed itself.
The bulk of information dribbles in slowly and unreliably.
Having passed the initial recovery period following surgery, we know the list of deficits that Colin is currently experiencing, but we do not know how long they will last. We are talking about days, but more likely weeks and months. In the meantime, we hang onto the smallest inklings of future trends. In the absence of science, there is a more vague exercise in the extraction of speculation from doctors and nurses or whiffs of change in Colin’s condition.
The most significant question that hovers over Colin’s bed is whether and when he will swallow well enough to receive nutrition orally. Following his failure of Friday’s swallow test, we were told that he would repeat the test on Monday, but over the weekend it seems that the consensus is to put the test off until later in the week in order to give him a chance to improve.
We were already prepared for the idea that the surgery (temporarily) affected Colin’s swallowing, though it was impossible to guess the extent of the effect or its expected duration. The hope is that the aftereffects of longer-than-usual intubation are pushing his incompetence at swallowing over the edge. If there is some indication that the neurological deficit may take some time to resolve, however, Colin will have to get a g-tube installed so he can receive nutrition safely.
For the time being, a nasal gastric (NG) tube is sufficient, although it is extremely irritating to Colin. During the day, we have to keep a hawk eye on him or mitt his left hand so he doesn’t pull the tube out. Perhaps the only positive aspect is the fact that he is motivated to try to get his weaker hand working in order to get the tube out, which he’s so far done twice successfully.
Virtually every conversation with his nurses involves his swallowing. How well is he dealing with secretions? Are they suctioning him more or less because of a change in the secretions or a change in his ability to manage them? Gee, he’s been coughing more — that’s a good sign, isn’t it? The biggest question and the one that is hardest to measure is whether the trend line is heading in the right direction and, if so, if it is doing so quickly enough to indicate that he will soon be able to eat.
The weekend was filled with this kind of mundane and vague inquisition and speculation. Colin has been gradually emerging from the fog and has been fairly dolorous about his circumstances, although he does laugh about silly things and enjoyed watching Aidan play with another 5-year-old who is here for epilepsy treatment. His returning awareness has been a relief but also brings with it a different set of questions and concerns. What is he aware of; is he uncomfortable/in pain; is he sleepy or sad?
Looking at him and seeing how healthy his body appears, we often fail to appreciate the extent of the surgery. The brain is a mystery, even to its most avid students. A child’s developing brain and the strange combination of delicacy and resilience add to that fundamental enigma. Add on top of that the inscrutible behavior of the cancer and its interaction with Colin’s body and immune system, and we are left bereft of definitives and conclusive science.
This environment lends itself to magical thinking and a pervasive tendency to identify omens in daily life. Omen hunting is a particular occupation during momentous days, such as that of Colin’s surgery, but can crop up at any time. It can be either positive or negative but in either case needs to be understood for what it is, the yen for more information.
The reality and truth are that time will peel away the darkness that obscures Colin’s destiny. Simultaneously, new questions will arise adding their own set of possible outcomes and decisions to our path.
For now, Colin is out of PICU and medically stable with unresolved questions about his ability to swallow under the assumption that this will recover over time. We also assume that his other deficits (sixth nerve eye movement and facial paralysis) are temporary. We will regard preservation of any degree of hearing as a miracle.
On the less medically intense front, Aidan is now in New York with the rest of the family, staying at the Ronald McDonald House. He has come to learn the particular benefits of staying there, namely a video game room in the basement equipped with a Star Wars game and X-Box and (so far) elaborate nightly craft-desserts — decorate-your-own cupcakes twice and sundaes on Sunday. Aidan also went on an outing to Rye Playland with Mom, where they particularly enjoyed Starship 2000, a centripetal force-based ride that totally rocks. At the top of the log flume, he started shouting, “I’m the King of Playland!” But best of all, he must have boned up on the Heartstring Tugging Playbook when he said, “It doesn’t matter what we do. It’s just nice to be together with you.”
With the kids installed in different locations, it has been an interesting logistical exercise to get around. On Sunday afternoon, Colin moved out of PICU (possibly never to return again during the course of Colin’s treatment) onto the general pediatric floor. In Westchester, this had meant moving from one private room to another private room with more privacy. Here, we moved from a quad with one other patient to a quad with two other patients (one of them, oddly enough, had been a roommate in the PICU). However, the accommodations seem more spacious. Some of this may be the ceilings, which are much higher, but the room layout is quite different. The bedside accommodations are more bedlike as well, with chairs that unfold into a flat sleeping zone as opposed to frustratingly upright reclining chairs.
The nursing on this side is expectedly less intense with higher patient-nurse ratios. This and Colin’s increasing wakefulness also mean that it is much trickier for us to leave him with the nurse while we go out for a meal or go to Ronald McDonald House together as a family. We are not sure how long to expect to be here, though obviously we will remain as long as it takes to resolve whether Colin will need to get a G-tube or not and probably through the first round of chemotherapy.
If anybody is interested in sitting with Colin so both Mom and Dad can get out together, we would greatly appreciate it. Please let us know by email/text/phone. One benefit of the regular pediatric floor is that here we are allowed to use our cell phones and computers. Also, we can receive mail at the Ronald McDonald House (we are in room 1101) at 405 E 73rd St., New York, NY, 10021. They provide a mailbox for all of the residents and are used to managing mail.