Put Me in, Coach

As Colin’s trajectory moves unevenly but steadily upward, we have also been taking him out into the world to finally do what he could not a year ago. At the same time, we are still at the phase where we turn back the mental clock by a year, reminding ourselves of what Colin’s life was back then.

Hindsight provides a different lens for that time. On the one hand, I can still put myself in the place of taking step by step through the challenges and celebrating each small victory. On the other, I feel the vertigo, abrupt and nauseating, of standing on that windy and crumbling precipice and clutching my child. Colin was so fragile and life was so uncertain through many of those long months.

Today, I can crack that door open and indulge in whiffs of that fear to remind me of how sweet life is today. But I must close the door, lean against it with heart racing, to hold back the onslaught and stay in the proper moment.

A Year Ago

A year ago, Colin had arrived at St. Jude and had a tracheotomy, which we were suctioning constantly (early on, a dozen times an hour but even so, his trach rattled and purred with secretions). He started wearing diapers after weeks of careful placement of various absorbent materials due to recurrent C. Diff. and unrelenting diarrhea. The only reason it was possible to manage him that way because there was no way he could move his body and disrupt my elaborate system. Just sitting up was a production, and he had to be propped on all sides to protect him from unintended tipping.

Before the trach, Colin had just begun audibly crying, but we communicated primarily through finger squeezes, weak gestures, and surprisingly emotive expressions. His face was still swollen from months of high-dose steroids (at this point, we were tapering down his dose of hydrocortisone, but the Cushingoid effects take months to dissipate), the right half hung largely immobile, and the left wasn’t moving much better.

This is what I see when I watch Colin do something normal. I see a child who was removed from a normal childish existence, and I feel impotence and guilt about that long span of deprivation. Although he was barely able to react or communicate his state of mind for many months, we are now beginning to realize his degree of awareness and suffering as his body and mind simultaneously recovered and were subjected to further insults.

The Littlest Giants

The “year ago” phenomenon was running strong when we went to the Giant Kids celebration. It was the day of Chelsea Clinton’s wedding; though uninvited and miles away from caring, we were only a few towns away from that celebrity event. The Giant Kids camp is a day to honor the resilient spirit of children and for families to enjoy a normal outing, with the caveat that the pediatric cancer version of normal is oversized and full of moment, both hidden and explicit.

The year before, my sister-in-law’s family came to New York to stay with Colin while I took Aidan and his cousin Simon to the Giant Kids event on a bus sent up from Ronald McDonald House of New York. Aunt Kirstie and Uncle Tom stayed with Colin in the hospital, left there with a pile of books and toys and take out menus for our favorite lunch spots.

At that point, Colin was well enough that we weren’t worried about an extended absence and he didn’t express anxiety at our departure (later, after he started crying, this wasn’t the case, and I still wonder if the issue was that he was too zoned out from the hydrocephalus to care or that he just couldn’t coax his body to complain properly).

On the bus, Aidan and his cousin Simon played while I scrolled through pages of diary entries, reading the story of another boy with ependymoma who had just died. It was a somber start to a fun day in the sun, but it did and still does put into perspective the suffering that these children go through and the impossible balance of quality of life issues when making critical decisions about care and survival. Good resections remain the cornerstone of potential cure for ependymoma, but a surgery that results in significant brain damage can also keep a child from receiving radiation.

However, Giant Kids transported us from urban dust and serious thoughts. The day was filled with storm troopers, swimming, the state rescue helicopter, police dogs, food, paddle boats, and a campus full of games and amusements for the kids. Giant Kids provides all of the patients and siblings with awards for their courage and delivers a strong message to pursue life fully and not get bogged down in self pity or despair.

To return to the same event with Colin next to us rather than sequestered in a high rise medical cell was overwhelming. He loved the helicopter and complained when we had to wheel him away. Though he was apprehensive of it, I took him up in the bucket of a fire engine (a special treat that qualifies in the you-wouldn’t-be-doing-this-if-your-kid-didn’t-have-cancer category).

Aidan swam and shrieked with delight when he got drenched in a fountain while we navigated around in a paddle boat. It’s not clear whether it overtly meant much to him to have Colin with us that day, but we know that his brother’s improvement has infected his spirits.

The great thing about cancer events is that there is no weirdness about alopecia, missing limbs, wheelchairs or any other oddities. There is the obvious curiosity about diagnosis, treatment and so forth, but this exchange of information is normal. Colin is another kid, and we are another family fluent in a language that sounds foreign and frightening in other circles.

Fenway Mini-Wish

More recently, we were able to take the boys to a Red Sox game. The opportunity came through my old high school, which purchased a large block of seats as part of an alumni event. We got our hands on two additional tickets so all four of us could attend, if not actually sit together. Earlier in the summer, we had gotten tickets but couldn’t bring Colin because he wasn’t up to that kind of trip; in the course of the summer, he has gotten much stronger and was just shy of dreaded week three of chemo cycle A, which has in the past been a sad return to a downsized but miserable Pukesville.

Because of the large block of tickets purchased by my alma mater, they were able to send one person onto the field before the start of the game. They offered this opportunity to Aidan, who is inching his way toward citizenship in the Red Sox Nation (this is not conferred at birth even with citizenship of either parent when the child comes into the world within the Yankees-Red Sox DMZ).

Separately, when Dad called for the tickets, on behalf of Colin he was able to get special access to batting practice, where we watched players warm up and we snapped a couple of souvenir shots of the boys with some of the team’s stars. Although batting practice is open to all ticketholders, we weren’t in the stands but on the field, standing in the area behind home plate that borders the field.

Baseball is a nostalgia-inspiring sport and no more so when Big Papi hits a home run in practice, the sharp crack of the bat undiluted by stadium noise or distance. For the players, it is all part of a day at the office, but their job includes the responsibility of promoting the wholesomeness of the national sport. Papi in particular clearly has a soft spot for children and, after getting his picture taken with Colin, gave away his bat to a girl next to us.

The trip onto the field provided Aidan and me with a fascinating tour of the underside of the stadium. We walked through the tidy groundskeeping area, lined with cleanly earthy smelling bags of stadium dirt. They could make a cologne out of it for fans.

We waited in the employee break room before heading out onto the field. I made the mistake of setting foot on the grass while taking a picture of Aidan (do they know that people actually play a sport on the field?) but otherwise the limbo time before Aidan’s big moment was the magical combination of boredom and excitement that characterizes baseball.

Soon enough, Aidan got to scamper onto the grass with two other fans and Wally, the Red Sox’ nonsensical mascot that personifies the Green Monster. As expected, Aidan was a little flustered and was probably making a strange face when he had his official photo taken.

Colin has always been interested in sports, more so than Aidan, and was enthralled by the game, though it seemed that he wanted to go on the field and play. He was seated in the handicapped area, which runs along the railing at the top of the seats; each wheelchair parking spot has a square marked out next to it for a folding chair. He spent a surprising amount of time standing at the railing watching the field, sometimes whimpering to us to take him down and put him in the game.

I Do!

Colin’s enthusiasm for playing baseball is part of a larger phenomenon that has become increasingly prevalent as he has gained strength. Ask Colin if he wants to join in and he will quickly raise his hand, shouting “I do!” in his hoarse and breathy voice. It doesn’t matter really what you ask. It could be a trip to the ice cream shop or a lion attack.

Who wants to go swimming? I do!

Who wants to do laundry? I do!

Who wants to get eaten by sharks? I do!

Colin is game for anything, though he also complains vociferously if things don’t go away. The end of baths can be unpleasant and more than a little dangerous, as he often resists getting removed and sometimes throws his leg over the edge of the tub in an effort to climb back into that porcelain chamber of concussions.

Everything Colin does is full steam ahead. He doesn’t want to miss a thing and doesn’t hold back. I don’t think this is particularly a side effect of cancer treatment, although this natural tendency may have been exacerbated by the months of deprivation and isolation.

Colin couldn’t be more different from Aidan, who tends to be thoughtful and restrained. He is the ant to Colin’s grasshopper, volunteering to “save it for later.”

On the other hand, both boys share a native generosity that is heartwarming and has won over many a heart in our year on the Cancer Road Show. Colin is well known for his precocious empathy for people who are suffering. When he encountered a boy about his age who was nervous about an impending trip to the phlebotomist, he spontaneously grabbed the boy’s hand and held it for some time.

These moments are simultaneously heartwarming and heartbreaking. Of course we love to see Colin’s expressions of compassion, but we also know that his own experience feeds his ability to recognize suffering in others and the desire to provide comfort.

During the Red Sox game, we sat next to an elderly woman in a wheelchair who was there with her son. We don’t know exactly what her medical issues are, but they are serious and chronic, and evidently the doctors who care for her annually get her tickets to a game. Dad struck up conversation with the son, who is a consummate fan.

When we were leaving Fenway Park, Colin reached out and grabbed the woman’s hand. She was quite surprised and touched by his gesture of solidarity and reassurance. Because he is still unable to speak well, he communicates mostly non-verbally, though he says more through his little hands and facial expressions than many adults.

Blackhawk Almost Down

Although it would seem that our experience in Boston would be hard to top, the Red Sox were handily outdone by the military industrial complex. A group of employees at Sikorsky, which is based in Connecticut, conducted a fundraiser for St. Jude. ALSAC (the fundraising organization for the hospital) asked if we would be willing to go for a photo opportunity and pick up the check.

We were happy to oblige, especially since we knew Sikorsky’s connection with helicopters, though had no idea whether the kids would get much out of it besides simply being close to the factory. As it stood, they weren’t allowed on the factory floor because of their age.

However, the staff promised to give us a tour of the small museum off their lobby and the “Vision Room,” which offers video presentations of their various products. When we arrived, I immediately had to deal with a diarrhea situation, so I scurried into a bathroom. Apparently, I missed a hint from the security officer that they might have something special in store for us.

In short order, the Sikorsky representatives came out to greet us. We shared a synopsis of Colin’s story and tried to keep a very antsy Aidan contained within the area of the lobby couches. The next thing I knew, they told us to put on our safety glasses and go outside.

We could feel as much as hear the whump-whump of a helicopter coming our way and a Blackhawk glided to the landing pad across from the lobby. Even at a bit of a distance, the wind from the rotors was tremendous. Not long before, we had been present when the NY state helicopter landed at Giant Kids, but this was another thing entirely. Small animals could get swept up in the force, and we were battered with sand and other detritus.

The pilot rotated the Blackhawk so we could see all sides, but most of the time, Colin’s eyes were squeezed shut. Even behind the safety glasses, he was reluctant to peek because of the windstorm of flying debris. On the one hand, it might have been easier to see if we had remained inside the building, yet on the other, it was remarkable simply standing so close to that powerful machine.

Even though both boys spent most of that time cringing, I know that the experience had the exhilarating quality of standing outside in a tropical storm. We went back inside, but soon enough we heard another less muscular whump-whump and they brought a different helicopter that the boys were able to actually get inside of.

Aidan was strangely reluctant to sit in the pilot’s seat and insisted instead that Colin do it, though we coerced him to do it (when else would he get the opportunity?) and he marveled at the plethora of gauges, guessing that the red button on the stick control was for the guns (the radio, it turns out). He was similarly convinced that a speed sensor was a weapon of some sort but was corrected by the pilot.

Back inside, we took cheery photos holding an enormous check; fortunately, the real one destined to be FedExed back to the mother ship was normal sized. We then visited the Vision Room, which was way more impressive than I could have imagined. They produce video game-like demonstrations of the capacities of the various equipment. We got to see some new helicopters they have under development, and both boys paid rapt attention to the footage. Aidan would have tried to play the next level if there were one.

We were absolutely floored by the extent to which the staff at Sikorsky went out of their way to give Aidan and Colin a special (and much appreciated) experience. A large part of our mission with any ALSAC event is to promote St. Jude as a worthy cause and demonstrate that the St. Jude kids are real and that they come from communities across the country. However, we reap the additional benefit that it is natural for people to want to do something special for a child with cancer.

The Dark Truth

I am frankly ambivalent about the attention that Colin (more so than Aidan) receives. On the one hand, I have been deeply struck by his suffering over the last year, and I can’t help but look at him and feel that he deserves something awesome to help counteract a remarkably unawesome past year. However, there are so many other families, either with cancer or in other circumstances, who are no less deserving.

We know many children who have died in the last year, and over the past several months have been stunned by the stark reality of the number of children who are not able to outpace their diseases. This is more true of brain tumors and neuroblastoma in older children than it is of some other forms of cancer (ALL, the most common form of leukemia, has become famously curable), and it is exactly this population that we have encountered.

So many of the families that we met last year in New York who were at Memorial Sloan Kettering for neuroblastoma treatment are coping with relapses or, worse, funerals. Already, a number of Colin’s contemporaries in the St. Jude brain tumor protocol have died, and many families in the listserve group for families of ependymoma kids have dealt with bad news.

Since we are in a position to provide these tremendous experiences to our kids, I know that I need to overcome my survivor guilt and enjoy the moment. The dilemma of course is how to digest somebody else’s loss in a way that feels right. I can’t allow myself to become depressed about it, given that I am blessed to have my own child alive and well in front of me; however, it is awkward to feel like their loss sweetens my cup.

When the tables are turned (in a different and less severe sense), I don’t mind at all. In fact, I’m gratified when other people react to Colin’s story by appreciating their families even more. They feel the brush of a ghost, the sudden chill of a near miss. There but for the grace of God go I. Even so, my situation is completely different and I live the paradox of being the luckiest person in the world while other people gaze at us with pity. I can only imagine that this paradox dissolves immediately once the child is gone.

A more immediate question is whether we risk spoiling the boys with all of these singular experiences. Once we got home from our adventure at the Sikorsky factory, Colin demanded that we have a helicopter land in our backyard. I explained that we have too many trees for one to land safely, though of course the truth is that the physical limitation isn’t the only thing holding us back from arranging it.

Parenting is always a balancing act of finding the inflection point between indulgence and discipline. My problem isn’t novel, though the scale isn’t typical.

Steps Forward

Despite months of a vacation from formal rehab, Colin has continued to forge ahead on all fronts. After long frustration with the dormant walker, we converted it to a “shopping cart” and got him on the road. He hasn’t become fluent with it and often prefers crawling, but we feel that he is on his way to walking independence. Better yet, we pressure him with talk of walking to tell Santa what he wants and Aidan even helps, playacting himself as Santa and asking what Colin wants for Christmas. If nothing else, it’s utterly adorable, and Aidan feels he is wielding his knowledge that Santa doesn’t exist with wisdom and compassion.

As for speech therapy, Colin’s vocabulary expands constantly, though of course one of his favorite words now is helicopter. He now speaks at times in complete sentences and says, “I love you” about as well as Mishka the Husky dog on YouTube. Spontaneously, he said, “I need help” while on the other stairs and, when I asked him what color something was, he responded, “I don’t know,” then, “It’s white.” The other day, he started making the “sh” sound and recently shouted, “Stop, wind!” while we were outside eating. I guess he didn’t like the way the wind moved the leaves in the trees.

On all fronts, it feels like we’re moving forward. At the end of cycle five of oral chemo, we ended up spending the night in the hospital for Colin to receive platelets. While there were aspects of the situation that seemed farcical (it took the emergency department staff hours to successfully access the port), more than anything it made me very thankful that Colin received the bulk of his many transfusions at St. Jude.

Among other things, our decision to go ahead with the transfusion was driven by the fact that we were an hour from the hospital and that the process built in additional delays and uncertainty. It seemed like all of these were stacked against us, leading to a 20-hour visit to the hospital for one little bag of platelets.

That said, I welcomed that long and strange Saturday night since I also knew it was likely our last of this type of adventure. Colin has since started his last month of oral chemo, one that has thrown curveballs in the past but isn’t likely to give us tremendous problems. The end-of-treatment scans will follow in short order and, if we get clearance, his port will come out the next day.

Riding the Yellow Bus

Aidan has started first grade and is taking the bus. Even though he’s at the same school, everything seems different now; he has to comply with a dress code, has a new class, and a little yellow bus stops in front of the house in the morning. He was admittedly frightened (his word) of all the change on the first day but, in typical Aidan fashion, didn’t hesitate to climb onto the bus.

It reminded me of the time in New York when we went to trapeze school and he was the first one summoned up the ladder. He went right up, one foot in front of the other, but collapsed in tears at the top and had to be unceremoniously lowered into the net. A year later, he was able to swallow his fear and ride on his own to school.

Colin is fantastically jealous of his big brother and desperately wants to go to school and take a bus. We are in the process of getting him into the local school system for early intervention. A nurse will be visiting to access his needs so they can staff properly, since the trach requires constant attention.

Until now, managing the side effects of the oral chemo has been uncertain enough that we could not consider putting Colin into a program outside of the house; feeding him is a strangely onerous task, since periodic nausea and indigestion have kept us from feeding him normal quantities and we instead give him smaller feedings throughout the day. It’s hard to imagine training somebody else in the details of ascertaining how much to feed him and whether he needs medication to help things along.

Our New Trapeze Act

As we approach the end of active treatment on the protocol, the transition feels abrupt, like I thought it would never end. Six months of oral chemo were preceded by a very long 10 months of surgeries and treatment. Within that accumulation of moments, it was too daunting to contemplate an end that was so distant. To focus on it was counterproductive to the goal of living in the present and dealing with the next thing on the path.

The end of treatment usually brings a combination of relief and fear. Yes, it’s great to be done with all of the crap, but we will soon be working without a safety net of something hammering away at cancer cells. There is probably some algorithm that describes how people react to this phase and a major component is the relative difficulty of the treatment itself.

For my part, I am not scared or, perhaps more accurately, it is easy to quell my fear. I have to trust that the duration and timing of the oral chemo has been well thought out by Dr. Gajjar and the researchers who put together the protocol. If they think this is enough, then it very well will have to be. It is ridiculous to give in to the thought that the oral chemo is somehow keeping the monster at bay and that, in the absence of that mild but constant chemical control, the tumor will resurge.

The fact is that the tumor may come back. We have done everything that we know or guess can help, and we enter the realm of normal uncertainty where the possibility remains that either we did not do the right things or that this disease is more stubborn than the child who hosted it.

This isn’t a very pleasant fact but it forces a certain discipline to not succumb to fruitless thoughts. The flipside is the gift of consciousness. How do we learn to walk through life invigorated by constantly brushing our fingertips against mortality without allowing the gravity of that blackness to swallow us whole?

If we allow it, we learn the lesson daily, and every day it changes. Every day we falter, a new opportunity arises to get it right.