Declaration and Decisions

Going into surgery, we knew that we would learn valuable information that would drive treatment decisions. The surgery itself promised to be rather ho-hum, endoscopically performed through either one or two holes, and resulting in a very modest recovery time. The anxiety wasn’t about the procedure itself but the findings.

The night before neurosurgery, it is impossible to expect a child to adhere to a normal sleeping routine. Simply being in the hospital, time is measured by shift changes and the flux of natural sunlight constantly competes with ubiquitous fluorescent seepage. On top of this, after a long day without food and a major procedure ahead, we couldn’t deprive Colin of the Muddy’s Prozac cupcake (chocolate/chocolate – no pharmaceuticals included) that our friend Merri kindly delivered. Between that and a cache of revoltingly sugared cereal, it was like Mardi Gras for an eight-year-old. I found Muddy’s crumbs in his underwear afterwards, but it was well deserved (and well worn) on his part.

When I finally went to sleep myself, I did what I have done for many years, and slipped in next to Colin, wedged between the side of the hospital bed and his solid warm body. He is an incredibly snuggly critter, and even those spare inches on the side of the hospital bed are infinitely more comfortable than the couch. This particular torture device has been designed to have a few functional features, such as storage for the vast volume of bedding that is required to render it into a surface approaching being suitable for sleeping, but is otherwise inconceivably uncomfortable in every permutation. As a couch, it is too shallow to pull one’s legs up onto in avoidance of the hospital floor and the arms on the side are too short to lean up against in order to stretch out one’s legs. As a bed, it is again too shallow to provide assurance that one won’t end up on the floor, and there appears to be no quantity of sheets and blankets that will dispel the impression that one is sleeping on a non-porous sterilizable surface.

The morning light crept into the room as I held Colin in bed, administering the occasional kiss to his closely shorn head. While I was finishing getting ready in the bathroom, Ian and Aidan arrived and Ian pointed out the sunrise, which I had otherwise missed in the bleary eyed daze of the new day. By the time I looked, the sun had become a fuzzy orange disk hanging heavily in the sky.

The Moment of Truth

Medicine is often a practice of conjecture and supposition that is eventually cleared away as a disease or condition declares itself. We have been playing a long game of cat and mouse with Colin’s tumor, trying to understand its behavior and anticipate its next move. Early on in Colin’s course, when we went through the long gap between his second surgery and the start of chemotherapy at St. Jude, our greatest fear was the uninhibited growth of the tumor, which was unchallenged by adjuvant therapy for those long weeks.

With no substantive changes in scans during that time, we breathed easy and felt that this might be a more indolent disease. The long period of relapse seemed to reassure us that this was not a more virulent manifestation of this disease, a fact that influenced our interpretation of the January relapse. Dr. Gajjar felt that this suggested continued indolence, despite the metastatic manifestation of the first new lesion, and the underlying aggressiveness did not really start emerging until that pathology report, the full significance of which escaped me until now.

Although signs have increasingly pointed to an aggressive and proliferative disease, we have demurred on our conclusions about how best to deal with it, waiting for further evidence. Today, Colin’s ependymoma declared itself much more clearly, sweeping away the conjecture and supposition that have colored our early approach. During surgery, when we got a call with a report after Dr. Boop was mostly done, I asked if there were any surprises, and I was told that there were not any. I took this as a positive sign that he was not seeing anything more than we had found on the MRI, and certainly that there was no widespread carpet of lesions on the lining of the ventricle, which was entirely possible.

However, when the OR nurse called to let me know that Dr. Boop was done and would soon be ready to meet with us for a consult, I heard a quaver in his voice, the lilt of uncertainty, that told me there was news waiting for us. When Dr. Boop went to extract the first visible tumor, he also discovered two that were too small to show up on the MRI. While the removal of lesions is obviously positive, making today’s surgery “successful,” he cautioned that these findings suggested the presence of more similar lesions, both those too small to see in the same area and possibly others on the same scale in areas that he hadn’t penetrated with his scope.

All Signs Point to CSI

Gamma knife isn’t going to be helpful for you; at this point, Colin needs CSI, Dr. Boop counseled. Even though Colin has fared well with these recent surgeries, he can’t suffer repeated insults to the brain like this. In a follow-up call with Dr. Johnson, he said that the immune system is not good at penetrating the CSF in the absence of a massive infection, so that may be an area where disease that has not yet established vasculature can remain hidden from the immunotherapy as well.

The gamma knife alone certainly isn’t going to help with multiple impossible-to-find lesions, and the abscopal effect using the indoximod isn’t going to reach cells suspended in the CSF. Although this certainly isn’t what we had hoped for, it’s not completely unexpected. The scan already had shown us not only two fairly clear tumors but also one suspicious blip that may or may not have been one of the lesions that Dr. Boop removed. This alone suggested proliferation; though we were hopeful for the possibility that these lesions would appear solitary enough to justify the gamma knife approach, hindsight tells us that this was a slim possibility indeed.

With the information we have on molecular biology as well as the rather rapid pace of proliferation, the situation instantly felt more tenuous. However, Colin’s good bad luck continues in that we did not find massively disseminated disease but, instead, indications that he stands on the brink of it. This gives us the opportunity to move to CSI as a salvage therapy under the condition of minimal residual disease. Under the circumstances, this is a reasonable starting point.

CSI is our strongest move to achieve another remission. How long it will last is very much unknown. In the literature, second remissions on average last longer than first remissions, with speculation that the initial bout of radiation damages the cancer cells enough to compromise them and make them more sensitive to the second treatment cycle. We have no idea how this theoretical damage relates to the prognostic value of the 1q gain.

The biggest questions now remaining relate to the application of radiation and balancing quality of life with efficacy of the treatment. We are interested in sparing as much critical functionality as possible and are particularly anxious about sensitive structures that already received radiation once. On Friday, we meet with Dr. Merchant to discuss the particulars of his suggested approach vis-à-vis the latest information on Colin. We have a meeting on Monday afternoon with Dr. Gajjar.

It is difficult to describe the sudden turns that can arise in the course of decision making. It is one thing to have a strategy in place, as we did, with a concept of the cascading decision tree, and another to meet a burst of information face-to-face and viscerally respond to it. The need to turn our thinking back to CSI was immediately apparent as we absorbed the facts and Dr. Boop’s calmly and kindly delivered rationale, which was clearly strongly colored by years of experience with this particular disease.

Brotherly Love

The biggest challenge in all of this has been Aidan and the process of opening his eyes to the process that is unfolding in front of him. We could, in theory, allow him to live in ignorance of the larger issues that we face as a family, but it would also deprive him of the opportunity of understanding what is at stake and responding appropriately. The gravity of Colin’s situation had already started to hit him before today’s news, and the impending surgery made him faultlessly sweet and attentive with his brother. He is an extremely thoughtful child and innately turns the shape and heft of a situation in his mind, quickly understanding how another person might experience it. This is a true gift and one that he has innately possessed since he was a small child.

Aidan truly struggles with the suffering of others and assiduously avoids conflict and difficult emotions. As a feeling person, this situation has made that much harder. However, emotional hardship and suffering are experiences that none of us escapes, and he has the opportunity to learn this now, within the embrace of a loving family.

Light and Dark

The absorption of so much information and the reformulation of our ideas about next steps was, while important and necessary, also very draining. In the afternoon, I set off for the downtown Memphis YMCA for a swim. I’ve visited this facility several times before, all around the time of the last surgery in March. I jumped into the hazy water and instantly felt the relief of following the long tiled black line in the middle of the lane back and forth across the pool. The submersion and subsequent isolation are reassuring old friends that, coupled with the effort of pulling against the sluggish water, give me the mental space to clear out extraneous inputs.

Unsurprising to those who are familiar with the city, this YMCA is old and worn. The pool itself sorely needs a touch-up and the ceiling is dotted with rusty spots marking every nail and screw. It looks like it hasn’t been updated for many decades and that there is no money available to freshen its face. Looking past the cosmetic issues, the pool is functional and provides important access to local families that want to teach their children to swim, a common gap in urban environments.

However, my focus was mostly centered on those rows of black tiles that split the lanes of the dingy pool floor. The pool room ceiling extends up two floors, and the shallow end has a tall, broad window near the top. Long rays of sunlight penetrated that otherwise dank room, challenging the weak fluorescents shining closer to the pool itself. Behind the panes, the sky was an idyllic blue, dotted with puffy clouds. Rows of glass block glowed beneath.

This kind of dichotomy, decrepitude contrasted with stark natural beauty, is something I have found to be endemic to Memphis. It followed me outside, as I made my way back to LeBonheur incognito in a silver rental car. One downtown landmark is the Wonder Bread factory, which stands in defunct stolidity, a block of chaste whiteness that on closer inspection reveals it is no virgin to the insults of city life. However, brilliant afternoon light purified its broad expanses, brightening the otherwise weatherworn exterior to a cheery sheen. Around the edges of the old Wonder Bread and Tasty Cakes billboard, ragged pieces of tarp that once concealed the sign now hang in tatters, flapping prettily in the wind.

It can sometimes be hard to reconcile these things, the decaying artifice of man against the unrelenting and indifferent beauty of nature. Light and life prevail, most poignantly in the center of urban blight. This seemed the right mood to pass through on my way back to the surreal containment of a hospital room within which one eight-year-old boy was speculating on the existence of dragons and contemplating the design of hospitals in Minecraft.

Colin says he likes being in hospitals, ostensibly for the varied breakfasts. This actually makes little sense because on neither morning at LeBonheur was he even allowed to eat, since he was fasting for the MRI on one day and the craniotomy on the other. I suspect he really does recognize that hospitals are where people are trying to help him, where they praise him deservedly for his exemplary behavior, and he is greeted with the reassuring solidarity of friends and strangers alike. His attitude is instructive; his tolerance for procedures (except eye drops, which he dreads more than brain surgery) and life in a medical setting make treatment less onerous for him than we might otherwise expect.

So we press on. We find ourselves embarking on a path that we had sought to avoid, but Colin’s ependymoma declared itself quietly yet surely today and set the course. As always, decisions are fluid and morph according to the input of additional information or rumination. There is no stagnant endpoint, but instead it is a continuum that must necessarily remain open to novelty. Boy and brain tumor, both guide the way in a strange partnership into the uncertain future.