No, No, No, How are You Doing?

Perhaps I was naively unconcerned about Colin’s latest scan. We returned to Memphis after a month at home for a battery of follow-ups, most importantly the MRI of the brain and spine. The legendary furnace of early July in Memphis intimidated us, yet those first days turned out to be relief from even more brutal heat and air quality alerts back home. Everything in life can turn out differently than we expect.

 

In point of fact, the scan confirmed my diffidence, though this doesn’t mean that I was correct in the first place to assume we would find nothing of concern. The greater question is whether this approach is one I can and should adopt in the future. In any event, Dr. Gajjar seemed quite pleased to proclaim the latest imaging of Colin’s embattled brain to be “rock solid.”

 

Of course, there is nothing solid about this process, and I can’t let myself be seduced by the alluringly immutable image conjured by his words. Once a quarter, we will get snapshots that may or may not reveal what is actually happening inside that little noggin. Parents in our position commonly suffer “scanxiety,” the building dread that this slice in time will produce a change in the family’s life and a further need for decisions or watchfulness. The exact shape and height of this curve are determined by clinical signs provided by the patient, the status of previous scans, and the personal inclinations of the worrier.

 

Living on Easy Street

There is a discipline to evicting unproductive thoughts from the mind, and it is not easily won. Since the day of awful anticipation and pitying looks last August as we awaited the first major follow-up scan performed after the second surgery, we have had it pretty easy. At that time, a full day with Colin’s heartrate unnaturally low, the common shared fear was that the cancer had spread like wildfire while left untreated.

 

Even though we saw some evidence of tumor growth during the course of chemotherapy, this all took place during the period we could, and did, take action. Now that we have capped off Colin’s treatment by flooding his head with photons, a blip in the gray haze is that much more menacing.

 

Perhaps the most difficult reality to live with is that of continued absolute uncertainty. Dr. Merchant let us know not to expect any change in the residual tumor for some time, even if the radiation is doing its job. This means that we are not to be concerned if it fails to shrink, but it also means that we must live with the niggling asterisk of suspected tumor, disposition unknown (dead or alive?).

 

Does Colin have cancer or not? The proper tense escapes me when I describe his situation to strangers. Had? Has?

 

It is difficult to decide how to talk about it, particularly with Aidan. He yearns for finality and a confident conclusion to Colin’s therapy. We speak often of the end of oral chemotherapy, and to him this means the final sweep of the anti-cancer broom, when I can no longer fall back on “he’s getting treated for a brain tumor.” His expectation that Colin is cured is not surprising, nor is it unreasonable. After a year of displacement and forced adaptability, are we ready to force upon him the contemplation of the fragility of life and our mortal impotence?

 

Santa’s Prostate?

On the other hand, this is the Santa Claus problem redux. If I promote something that I do not believe is absolutely true, will Aidan learn to distrust me when he calls me out on a lie? This is more intractable than the Santa Claus problem, since the myth of the jolly elf is supported by a vast body of media. It was easy to go along with it without affirming it myself or using it as disciplinary leverage (even so, Aidan concluded that “naughty” is worse than “bad” because that word is inextricably associated with Santa-delivered punishment).

 

However, the tumor demands that I directly address it. The tumor is all gone and Colin will only get better <big hug>. It is, in the end, impossible for me to lie in this way to my children, for the big hug to be fueled more from the desperate hope that what I say is true rather than assurance of it. It would be easier to do so if the asterisk weren’t so large and looming; generally speaking, we are looking at even odds that Colin has been cured and no way of positively verifying that fact.

 

Our children yearn for certainty and rely on us to protect them but also to prepare them for the world, which is fundamentally unpredictable. There are cultures where death is regarded as an integral aspect of life. I remember reading about a people somewhere in Southeast Asia where families literally live with the bodies of deceased loved ones for a year. There are some unanswered technical questions about putrefaction that this immediately conjures. The point is simply that, if children can be raised in a culture where death is embraced as a normal part of day-to-day life, when and how do we introduce it to our children?

 

The very idea that we can control the course of life and prevent random misfortune is a perverse fallacy perpetuated by our culture. It manifests itself in litigation that insists that we assign blame for everything. We believe that bad things aren’t supposed to happen to children, when the long history of high infant mortality throughout the bulk of human history speaks otherwise.

 

Legacy of Tragedy

A common experience among new parents is the terror that this tiny fresh life is so fragile. I remember holding Aidan being stricken by that fear and Googling endlessly to find statistics on when the threat of death by SIDS had passed. However, I also felt connected to the legions of women before me who have held their own vulnerable infants but without the benefit of modern medical technology and hygiene.

 

I realized then that it is in the nature of mothers to bear and nurture babies without prejudice to their chance of surviving. Furthermore, we must also have the emotional fortitude to endure that tragedy or else humans would have faded out long ago. I don’t mean to imply that this softens the blow of the loss, but instead that it offers hope that the dizzying darkness will lift.

 

For my part, I had to loosen hold of the fear of the aggregate threats to my children’s well being, though some of these (like cancer) remained unbearable. The truth is, though I couldn’t perform a thought experiment in which that sort of hardship was tolerable, and I mentally swept away the idea as statistically impossible, the reality of it was easier to accept because reality is real and comes equipped with immediate tasks that need attending.

 

Although there is no doubt that Aidan has learned that sometimes bad things happen, the second half of the lesson is that we cannot close the door on misfortune; the possibility for more stands at the ready. I would love to be able to seal up the box of ependymoma and throw it away forever, but neither this disease nor life works that way.

 

On our last visit to Memphis, Aidan accompanied us to the Star Trek room, a blue-lit chamber lined with computer monitors for reviewing scans, where we interrogated Dr. Gajjar about the MRI. Though more focused on expending physical energy, through exchanges like these, he must absorb the implications of the lingering questions that fill the room. For one, the radiologist identified an area of greater enhancement, though Dr. Gajjar dismissed this utterly as new tumor. Comparing scans, he said he can’t see any difference in the area in question. Neither could I, and Dr. Gajjar was otherwise quite confident about the status of the disease.

 

Today, we embrace this fact, though storing away the fact in the back of our heads. There is no better reality check than radiology reports, which exquisitely trace the border of every question mark without benefit of amelioration from the opinion of an oncologist. These reports aren’t more real or true than a treating physician’s well educated opinion, but they provide an unvarnished triangulation point to better understand the disposition of Colin’s case.

 

Step Away from the Syringe

Another benefit of the last scan, and the one with a more immediate reward for Colin, was the conclusion that the area of the venous thrombosis (blood clot) was sufficiently stable to stop treatment with Lovenox, the anticoagulant. We had been giving Colin shots in his belly twice a day for six months, so he was relieved to have that torture end. The bruises have already faded from his midriff and I gleefully packed away the injection supplies when we got home.

 

The experience of returning to Memphis was new to me, as it was the first time I have ever gone there without the thought that I would be staying for a good chunk of time. The city knows how to remind us of its peculiarities, especially on the road. A driver escaping the scene of an accident that sprayed car parts across the road and a vehicle parked on the shoulder engulfed in orange flames come to mind. Both took place on the day we arrived and helped reorient us to the constant threat of drama that defines Memphis driving.

 

Whenever drivers swerved across lanes abruptly without signaling or pedestrians/electric wheelchair drivers darted into traffic unexpectedly, we exclaimed, “Welcome to Memphis!” It took a bit of the edge off the anxiety created by such unpredictability and inspired an ambivalent combination of nostalgia and relief that our stint in the automotive battle zone that is Memphis would soon expire.

 

For his part, Colin was ambivalent about returning. He still has fresh memories of the various unpleasantries of treatment, remembering that bad things tend to happen at Assessment and Triage (needle sticks, either to access the port or for peripheral blood draws). However, he also perked up when we got to the rehab area, suddenly chatting away about the animals painted on the walls.

 

After a few days, Colin became periodically sullen and we reassured him that he was not back in Memphis for treatment, that this was only a check-up. For us, this was a sobering reminder that he has not endured these months of medical care unscathed. When he returned home, he shed his status as “patient,” but now he had to wonder if he was being thrust into that world again.

 

On the other hand, we were able to see some of our Memphis friends, most unexpectedly a visit with the Simkins. We thoroughly enjoyed the opportunity to just hang out over a couple of days, though the acceleration of his bone marrow aspirate (and the reason that we were able to reunite) was another of the constant reminders of the precipice that these kids perch on.

 

Fortunately, the Simkins quickly received the green light to return home and Brennan remains in remission. The month home has been good for Brennan, who has better color, a new carpet of dark hair, and a look of vitality I had never before seen in our months of acquaintance. Now that we enter the realm of scans along with Colin’s contemporaries, we are also able to glimpse this aspect of life at St. Jude, the return of kids looking better than ever.

 

Up and down the halls, we flaunted Colin’s many improvements. Even in the span of a month, the palsy of his facial nerve has improved, his tongue moves better, and his body has become more lithe, his movements quicker and more adept. Staff and friends alike marveled at his continued recovery and the transformation of wounded patient to little boy. He is not the only one.

 

Hair’s the Thing

We also saw our friends Tracy and Jordan, back for Jordan’s regular check-up. Before Jordan went home (in remission), she confessed to me she was worried about how people would react to her alopecia. At eight, this child has gone through years of treatment that I would have expected to inure her to the social side effects of the disease. Nobody is immune. I had contemplated it back when we were packing our own bags, and these physical differences were heavy on the mind of a little girl who wanted to return home to be just that and not a medical record number.

 

When we saw each other in the lobby of Target House, Jordan was delighted to take off her hat and show off pale blonde thatching. I reminded her of our conversation several months ago and how she doesn’t have to worry about people looking at her bald head now. It is nice to be able to say that, in part because there are so many other things left to worry about.

 

Colin himself demonstrates some anxiety about his differences. He notices when children ask their caregivers what is wrong with him. If anything, he is eager to explain the trach and the g-tube, his lips moving in silent chatter and arms gesticulating. The innocent bluntness of children is more welcome than the pitying avoidance that we more often see in adults.

 

We remind Colin constantly that his deficits will resolve. Our campaign is currently to get him taking his own steps to see Santa, a fact we reinforce constantly. We have a less clearly defined goal for swallowing but remind him that he will be eating again soon. He still relishes plastic food and spends hours manufacturing Play-Doh pancakes. We periodically offer him food to taste, particularly ice cream, though sometimes he refuses of his own accord. Lately, he has a hard time complying with our volume restrictions, resulting in wrestling matches over spoons and bowls. As much as we are convinced he is improving, it is still slow going that necessitates hope+patience.

 

This Little Piggy Went Wee-Wee-Wee-Wee All the Way Home

Returning home was a relief, and it seemed strangely more definitive than the last time. In June, our departure from Memphis was more an escape. After a month of delays, I was going a little batty and just needed to get the hell out. Although we still face some uncertainty regarding Colin’s reaction to the oral chemo and a recent history of mysterious events, I pushed those thoughts aside.

 

We have managed Colin’s care conservatively because he has demanded it. As he improves, it becomes more feasible to do so effectively at home without intense medical monitoring. Our month at home before heading back to Memphis for scans affirmed this, so we returned to Danbury with greater confidence that the situation was reasonably stable. This time, coming home felt much more like a homecoming.

 

Of course, life with Colin is never without some drama. Despite relatively calm waters with the latest two rounds of chemo, we ended up in a mad dash to the emergency room after we noticed painful swelling and hot redness on his right foot. It was about a week into the fourth month of oral chemo, another cycle with the drug erlotinib (Tarceva). It looked like an allergic reaction from a sting, though there was no puncture wound. I considered that it was a break or sprain, but later we noticed a more modest but similar reaction on his left foot and left arm.

 

The big debate was whether we go to Danbury, which doesn’t have proper pediatric specialists to treat Colin comprehensively, for immediate assessment or take the longer trip directly to Valhalla. Since he didn’t have any signs of respiratory distress, we opted for a longer drive with fewer hassles at the other end.

 

The staff was confused because of Colin’s status as a patient from Tennessee (until oral chemo ends, he is on active treatment, so the doctors at St. Jude retain primary responsibility for his care), and if anything they were more immediately concerned about his lungs. The entire day, Colin had been sneezing/coughing (it’s hard to tell the difference with the trach) copiously, and a chest x-ray confirmed a “viral process.”

 

The swelling was determined to be a reaction to the chemo, and we were directed to use over-the-counter hydrocortisone which, much to my surprise, worked. We had seen the more typical rash from this drug during the previous cycle, but I hadn’t been expecting swelling per se. With continued treatment at the original higher dose (in the last cycle, we cut his dose in half after he had a severe early reaction), we knew to expect things to be different, but we weren’t sure how those differences would manifest themselves.

 

The classic side effect that can be tricky to manage is diarrhea. Strangely, Colin vacillates between diarrhea and constipation. Thus, we have to be judicious in our use of medications and have used the anti-diarrheal only sparingly. Had we not gone through months of both explicit and ersatz medical training, there is no way we could have felt comfortable with the balancing act that characterizes management of Colin’s symptoms.

 

In truth, the oral chemo offers us a soft landing to normalcy. Although we remain constantly vigilant about Colin’s health, the emergencies seem less emergent and we gradually divorce ourselves from the absolute rigor of his medical maintenance. All of the scheduled medications he is currently on will be discontinued three months after he is done with chemo.

 

Of course, the much easier-to-manage version of Colin is still dramatically different from the pre-diagnosis one, and our lives are all affected by that fact. Even once chemo is done, the trach represents a constant medical concern, both because we have to maintain it per se and because he remains at higher risk for respiratory infections. Furthermore, less serious ailments have a greater chance of evolving into pneumonia. The most profound transformation for Colin and for us will come when that dreaded trach comes out.

 

Normal Normal

While Colin is on a glide path to normalcy, Aidan has stumbled into it awkwardly with the physical grace he inherited from me; I dare to fingerpoint since his father is a natural athlete. Though not entirely unathletic, I (like my father before me) look poorly built for the job and have a tendency to walk into door jambs and so forth. Sports require some staying power and more practice than the average bear, but the situation is not entirely hopeless. I am mainly speaking for myself, of course, but I harbor sensitivity for Aidan’s developing physical being and believe he will ultimately find the right niche to concentrate his efforts in.

 

This summer, we signed Aidan up for a series of themed camps, including art, science and soccer. The soccer camp was run by an outfit that imports its coaches from England. The staff is populated with fit young men with working class accents that, if left unattended, would devolve into East Enders vernacular that requires subtitling.

 

The young men were exceedingly polite but firmly faced the challenges common to all who wrangle young children. The camp centered around drills and exercises, culminating in a drill contest between children and parents. The competition is surely rigged to fabricate a tie. Its purpose may be more to underscore the value of the service among parents who struggle to roll on the ground, throw balls up in the air and catch them, and so forth.

 

In the course of the games, we learned a little about how the coaches communicate with the children. “How are you doing?” the head coach asked the group. “No, no, no, how are you doing?” the children shout in unison.

 

Lined up behind our own cones, we parents were also enjoined to participate in the same litany. Chastised for our lack of passion, we repeated the exchange until we satisfied the coaches and delighted the children with our ineptitude.

 

Sitting in the hot grass, I contemplated how the reflection of “how are you doing” back to the coach boomerangs attention to him, and not just for the sake of rallying the kids’ attention. American culture emphasizes the individual, yet one benefit of team sports is the accomplishment of a shared goal through individual achievement. Generally speaking, the soccer camp encouraged that without resorting to either the neutered everybody-gets-a-run philosophy of T-ball or the testosterone-fueled obsession with winning as the sole acceptable outcome.

 

More specifically, and without further scrutiny, I liked the fact that the kids were conditioned to ask about somebody else rather than focusing on themselves. It is a lesson worth absorbing.

 

Now that we are home for real, we can start settling into this new version of normal rather than primarily learning to live outside of St. Jude. This will be even more true after Colin is done with active treatment, and after each improvement off the laundry list of deficits he has acquired.

 

Then, finally, when somebody inquires after Colin, I can respond, “No, no, no, how are you doing?”