True North

Colin is in remission, and it now seems easier to utter the words aloud. His scan from January was still “stable,” with Dr. Gajjar now asserting that the sliver of “whatever” that cradles Colin’s brain stem is scar tissue. He further stressed that surgery would not help and would only cause more damage (duh!). All of that is irrelevant, since we have done everything we can to turn his fortunes around and, so far, it’s working.

Christmas was a hectic joy with the boys and our family, where we ultimately had an uncountable blur of little figures whizzing around our house. It was the kind of chaos that I never experienced as a (fundamentally) only child yet relish. The only thing missing was dogs, which is just as well in the winter where we were confined within four walls. Instead, we had a surprisingly brave cat who spent more (too much for her own good) time staking her claim as mistress of the house.

On the subject of the cat, we brought Bella home several months ago from her urban home with a generous and kind friend of ours. As much as we worried how she would readjust after more than a year away, she is happy to have her old haunt back and reestablish her matronly relationship with the boys. She scolds them for misbehavior and feigns indifference but now sidles up to Aidan when she could easily wander elsewhere.

Aidan had been very vocal about bringing Bella home, but it’s not clear how well Colin remembered her after the long separation. Either way, he loves animals and both boys were absolutely thrilled to have her home. Now, she is often the subject of conversation for Colin, as he pipes in, at any mention of cats, “Me have cat.” Recently, he sat on the couch adoring her physically and verbally. “I love you, Bella! I love you, Bella!”

Another of Colin’s favorite subjects is Santa, whose departure he instantly lamented. The day after Christmas, Colin pointed out the window where we look out for Aidan’s bus, plaintively crying, “Santa gone!” His expressions of sorrow and disappointment are complete and utterly heartbreaking. It is tempting to dispel the myth, but for the magic that Santa represents.

Colin can tell you that Santa lives in the North Pole and often asks when Santa will be bringing presents again. In this regard, our two children are clearly polar opposites. At the same age, Aidan questioned how Santa made it down the chimney unscathed and other Clausish impossibilities. On the way to pick Dad up from minor knee surgery in December, he told me he was glad I hadn’t lied to him about Santa when he pointedly asked me whether the jolly elf were real. He is careful in not ruining it for other kids and gets visibly uncomfortable around store Santas, torn between his distaste for playing along with it (when both parties know it’s a farce) and his desire to keep from spoiling the fun for the others.

Colin, on the other hand, has turned out to be a real Santa-phile. He loves the reindeer and told me that his favorite therapist at school was Miss Marty because she had him pretend to be a reindeer and pull a sleigh. We sang Rudolph the Red Nosed Reindeer somewhere about a thousand times through the holidays and have slowed but not stopped since. On his own, he repeats the first line, but if we sing together, he can supply many of the key words.

It’s all very cute and age appropriate, and that has become a stunning reality of our lives: in the most important ways, Colin is just a normal boy. He sits and plays with army guys and various vehicles and a pair of binoculars he got to compensate for a very unpleasant peripheral IV stick at St. Jude. He piles men in the vehicles, sets up lines of unknown meaning with the cord from the binoculars, and positions them all with great intent for hours at a time.

We just crossed the big hurdle of being able to play board games together. Colin used to get mad, frustrated, or bored and start throwing pieces around (forget Monopoly – that became a real housing market crisis).

He now asks to play Sorry and, even though he doesn’t really understand the minutae of the game or even care much about the outcome, he loves recognizing what color each of us is playing and going through the act of turning over a card he can’t read but at least guessing on what number is on it. For him, it’s a good opportunity to count (he can now recite the numbers to nine on his own, and he can easily count his fingers) and interact with everybody.

One thing we discovered on our last visit to St. Jude was that Colin is cognitively normal. Looking back at those months where he went through chemo, we were delighted that he was able to let us know he wanted to watch TV by pointing up in the corner. At the time, it was often difficult enough to determine whether he was paying attention, and he was sick to his stomach too often to count. In retrospect, it seems negligent that we didn’t sit and teach him numbers, colors, shapes, and letters like a normal two-year-old would learn.

The psychologists performed an “academic skills” (if you can call it that for preschoolers) on just those measures during both the October and January visits and found that Colin has actually improved in that three-month period. School has no doubt helped and we are happy to see him continually on the upswing, since the trend means more than the location.

Can You Hear Me Now?

Colin also received a device that helps him hear better in noisy or crowded situations. The audiologist explained that this is typically recommended for any child with unilateral hearing loss (the result of his second surgery). It’s especially useful in his case, since chemotherapy has deteriorated the hearing in his left to the extent that he is borderline for needing a hearing aid, an unfortunate but I-can-live-with-it finding from the October visit. We held off on a full fledged hearing aid, since the FM transmitter is generally better accepted by the children and he is producing the sounds he “should” be having difficulty hearing/making, like “s.”

Aidan loves the FM transmitter, which is a small unit with a microphone on a cord that a person can wear that transmits the sound directly into the ear piece in Colin’s good ear. For the boys, this is more spy gear than a device to overcome a disability, since Aidan can run into another room and whisper into the microphone. For the most part, Colin really just uses it at school. Although it’s also useful for other crowded places, he sometimes doesn’t like it and makes me take it out. I’m not sure if it annoys him or he gets self-conscious about it.

Colin knows that he’s different not just from other kids but from his pre-diagnosis self. He is prone to periods of dolor, especially when looking at old pictures. Before Christmas, there was a family photo from the hospital that seemed to set him off, and he just stared at it and looked sad. He can now tell us that he remembers being sick and sometimes doesn’t like being reminded of it. That said, he still likes many of the pictures from treatment, including that one.

Colin’s favorite photo of all is from Disneyworld of him and Aidan as Star Wars clone troopers. At the time, he couldn’t go on the ride itself that spits riders into the Stars Wars gift area that contains the concession where we had the picture made. However, we spent a lot of time hanging out there as Aidan kept cycling through the ride with one or the other of us.

This picture, expensive but grainy, was a poor value as art yet has paid dividends. Colin loves pointing at it, asking questions or asserting that he is a clone trooper. In the photo, his head is Photoshopped on top of the body of a clone trooper holding his helmet under his arm, a classic military portrait. His clone trooper alter ego looks out at us seriously, looking tough and robust. Next to him, Aidan grins goofily in what turned out to be the best of many attempts to get him to smile naturally.

It’s Not You, It’s Me

On the Monday of the MLK long weekend, I took Colin to the Children’s Museum of Memphis after depositing Aidan and Dad at the airport. It was our first trip to that museum, on a rainy day where people would normally look for indoor ventures, and a holiday weekend to boot. The museum was crowded and offered special activities for the children, everything from crafts to a performance.

I thought the performance would be a good idea, as Colin, like most children, enjoys music and dancing. I got a spot for his wheelchair at the edge of the marked performance area, thinking he would have a good view of the show. We waited for more than a few minutes, in part listening to an introduction about the group, which was interesting to me but not at all for Colin.

Very aptly for the occasion, this group specializes in African-American dance and music, embracing a broad range of styles (African, African-American, Cubo-African). This particular performance is a child-friendly depiction of Dr. King’s life, starting with his wooing of Coretta. The man advertised it as being funny and completely appropriate for kids, and I was curious how they were going to pull it off.

Well, that made one of us. Once the singing and dancing started, Colin starting screaming, “Stop” and waving his hand. I’m not sure if it was the noise or commotion or what was really bothering, but he made it plain that he wanted no part of this. I gently asked him to be patient and waited it out a bit, but it did no good.

As much as the trach is a nuisance (understatement!), it provides is a degree of convenience in these situations. Colin was wearing the Passy-Muir valve, which allows him to speak more clearly and loudly. Once he started complaining vocally, I popped off the valve and neutered the disruptive properties of a pissed off three-year-old.

Now, I knew I had to get Colin out for his own sake, but it was no small feat to back out with a wheelchair and now a crowd of people collected behind us, mostly sitting on the floor. As I asked people (and their children) to move so we could bow out, my head hung low and stammering a stream of excuse-me-sorrys, all I could think was, Great, everybody’s going to think we’re RACIST!

After all, the MLK holiday in Memphis of all places is a significant and bittersweet memorial to his life. I heard one woman catch herself telling her child that it was to celebrate Dr. King’s dea-uh birthday. The young people in the show were performing with such zeal and sincerity that it was painful to think of them taking note of our departure and speculating on the cause.

Fortunately, Colin enjoyed other parts of the museum, though less so than he would have if he were normal. Although the museum and its staff accommodate handicapped patrons with relish (there is a wheelchair lift into an airplane display), many of the exhibits were accessible but not much fun for him, between his gross physical limitations and the overall din.

Frankly, the imagined accusations of racism aside, it was a little depressing to be there and see the stark difference between Colin’s experience and that of his peers. We had what fun we could and skedaddled, which seemed to suit him.

Where Abnormality is the Norm

Colin is aware of his disabilities, but in some circumstances, it matters much less and those boundaries start to fade. At school, the other children are used to the trach and the wheelchair, and one of them who was helping transport his walker to the gym actually got strapped in for a glimpse at Colin’s perspective. This environment normalizes him and provides him with tremendous self esteem. He has his own friends and doesn’t have to rely on the siblings of his friends for peer relationships.

School has been the perfect environment for Colin to advance his rehab by leaps and bounds. He absolutely loves using his walker there, where the floors are smooth and uncluttered by area rugs. The other day, he surprised us by emerging from his room in his walker and then insisting on walking to the car, so this is now part of the daily routine. Since we left St. Jude in the summer, one of his goals was to walk with somebody holding only one hand. Although he has done this sporadically, he tires easily and usually loses his balance, swiveling around precariously on the supported side. He prefers to walk where he can use the other hand to steady himself against furniture or the wall.

Just recently, Colin started walking confidently while somebody holds his left hand. He can roam all over the house and no longer relies on furniture or the wall. We got new orthotics for him following the last trip to Memphis, and I’m sure it helps, but it’s clear that the encouragement and support he gets from school have boosted his self esteem.

Colin really has been thriving at school, and one of our favorite things to do is read the detailed accounting of what he did at school during the day and then prompt him to talk about it. Aidan even gets into it and uses a very child-directed tone in asking, “Colin what did you play with at school today? Did you use the rice table?”

There is always something that resonates with Colin and that will inspire much incoherent chatter and Italianate hand gestures. For example, he loved the recent theme of groundhogs, and we leveraged his enthusiasm by setting up a tunnel and having him dig tunnels (they did a version of this in class) in the house. I also dipped into the little boy penchant for all things scatological and combined it with a game of “potty ball,” in which he threw a ball into a *clean* potty seat that he has outgrown. I should also mention that the potty ball basket is not the business end of the potty seat.

On the potty training front, we’ve made some progress, and he regularly uses the toilet in the morning and before bath and sporadically in-between. He also announces when he’s wet or dirty, but I haven’t figured out how to get him to shift the timeframe and let us know before the big deed. Honestly, although this is on “the list,” it’s not near the top.

Abracadabra, Trach Be Gone!

What is at the top of the list is decannulation of the trach. Following my informal phone consultation with Dr. Thompson in Memphis, we had a swallow study done in Connecticut and then saw the good doctor on our trip to St. Jude. On the phone, he had suggested that we return to Memphis in February for a preparatory procedure and then decannulate Colin in March.

However, once we got into a more in-depth conversation, it was clear that the process was a little different than I had understood. More often than not, a growth of tissue (granuloma) occurs in the space above the trach, in response to irritation and secretions. This growth has to be removed in order for Colin to be safely decannulated; right now, if it’s there, it doesn’t matter, since he can breathe in and out from the trach/stoma. Once he starts relying on his upper airway, it potentially constricts the airway.

The doctor will start by liightly sedating Colin, checking for vocal cord function of the paralyzed cord. This doesn’t have direct bearing on whether the decannulation takes place, but it’s useful to know. If there is a granuloma present, he will remove it by laser, which instantly cauterizes the tissue and makes an otherwise extremely bloody procedure effectively bloodless. If this is the case, we leave the hospital (Le Bonheur) the same day and treat the area with, no joke, ear drops that prevent the regrowth of the granuloma. On the other hand, if there is no growth, they will simply remove the trach and keep Colin in the hospital overnight for observation.

We will have to cover the hole (stoma) with a gauze as it closes and, because this is a true tracheostomy where the doctor pinned back tissue in order to establish the hole, it will not fully close on its own. Ultimately, this will be surgically closed.

Since the last scan, we found a great local ENT we feel comfortable with who will follow up with Colin. If the granuloma has to be removed, we’ll do the actual decannulation back home, which saves us a trip to Memphis. Right now, the initial procedure is scheduled for April 6, two days after his next MRI. During our visit, Dr. Thompson suggested mid-summer, but he agreed to the earlier date based on the results of the swallow study.

All a Matter of Perspective

Many months ago, Dr. Thompson told us that pretty much all of the nerve recovery you are going to see will happen within the span of two years. After that, they regard the situation as static. With time wearing on following the surgery that induced the cranial nerve damage (July 2009), I was getting nervous, even though he also added that you have to look at the date of the last surgery (January 2010).

Colin’s improvement in swallowing was as much a relief to me as a joy, knowing that things were headed in the right direction. So many other trached kids that we know of have been decannulated sooner than Colin. However, Dr. Thompson told me that he is surprised at how quickly this process has taken place, given the magnitude of the tumor and number of surgeries.

The last time we performed a swallow study, nothing was working right. Colin couldn’t coordinate the formation of a bolus of food or send it down his throat; this wasn’t triggering the proper response, and the bolus didn’t make it close enough to the esophagus to see if that was working right (once triggered, this is a series of muscular movements that alternately contract and open the esophagus, and it probably wasn’t working right either).

Clinically, we could tell that fairly large amounts of food were disappearing down Colin’s throat. Some of this didn’t make it where it needed to, as evidenced by some coughing or gagging, and you could also hear the raspy purr of residue at the top of the trachea. Anything that enters the trachea is considered “penetrated” and anything that makes it past the vocal cords is “aspirated.” The trach is well below the vocal cords, so it is possible for him to aspirate and then cough to clear his trachea without anything ever showing up at the trach or around the rim of the stoma.

Thus, we knew that Colin was still penetrating/aspirating, but thicker foods were remaining clear of the trach, which is what generated so much excitement in us. Also, his chewing and bolus formation had improved immeasurably since the last test. The advantage of the swallow study is that it allows us to literally take pictures of what is happening. We put barium on foods of various textures, and then take an x-ray video.

When we went in for the swallow study, there was a strange dichotomy of responses in the room. Dad and I were thrilled to see the esophageal reflex working correctly – the triggers leading up to it were slow, but they worked. The speech pathologist and doctor were dismayed that he was still aspirating most textures. The only texture that he “passed” on was a gingerbread cookie from school that magically disappeared and somehow escaped the detection process. Thus, it was declared “swallowed.”

They apologetically reported that Colin’s swallowing is still discoordinated, with delayed reflexes. From my perspective, it was a tremendous improvement… delayed but at least present. I assured them I wasn’t expecting to walk out of the hospital being told to start feeding Colin a normal diet by mouth. There is a long path ahead for him to even have the muscular strength to process foods of varying texture, but he gets to enjoy food and manages better all the time.

Bittersweet

Watching Colin improve has been a real privilege and joy. Seeing how far he has come allows me to pay no mind to the possibility of future limits. This was a much more difficult exercise when I was concerned about the prognosis of swallowing or walking. Both of these, the top two issues following the cancer itself, are steadily on the upswing.

The improvement of Colin’s fortunes does not equate to normalcy, however. There is no returning to the pre-diagnosis life. This is a mixed blessing, bringing with it both extreme gratitude for the many gifts that we have received and a sense of alienation.

Statistically speaking, we know way too many kids with cancer, and way too many kids who die. Tragedy strikes every community, where car accidents, fire, drownings, illness and other misfortune unexpectedly claim the lives of children. These moments always serve as a wake-up call and an opportunity for people to come together to help those in need.

However, our exposure to death by cancer is disproportionately high, not that I would have it any other way. Our cancer family is the most unlikely mish-mash of people who would otherwise never convene in one place. Our support for each other is singular and near impossible to replicate.

It can be difficult (emotionally, not logistically) to keep up with the many threads of the children whose stories we have followed. Amid our joy over our own wonderful Christmas, we were touched by the loss of a little boy who lived down the hall from us at Target House. His was a particularly difficult trajectory, and John’s passing was equally poignant. After long periods of treatment and hospitalization for complications, he was reunited with his family to spend his final days on hospice. After a short time at home, he died in the wee hours of Christmas morning. His siblings awoke and ran to his room to find it empty. Although the children responded well to their parents’ explanation that he had returned to Christ and proceeded to open their presents and enjoy the holiday, there is no turning away from the sadness that pervaded that family’s Christmas.

How do we observe, care about, and express compassion for these children and families? It is impossible to say and different for every situation. We could live submerged in grief every second of the day, but that would be pointless and a tragedy in its own right. I don’t think the family that lost their son on Christmas morning would want to hear, “We had a crappy Christmas because we found out your kid died.” In fact, I’m sure that would make them feel worse.

Well, I didn’t have a crappy Christmas because of that sad news. I experienced many moments of reflection and deep appreciation for the gifts that I received – not ones in boxes. All of this is hard to explain, especially because of the bizarre blend of horrifying and awe inspiring moments we have experienced. It’s challenging to discuss the totality of one’s feelings when people get overwhelmed at the part where the boy died on Christmas morning. Any more detail is too much for the listener to bear, and then it’s impossible to convey the texture of emotions that underlies my response. Or how and why this child’s death feels so different to me from that of Jake, whose case paralleled Colin’s in many ways and died the day after Christmas. These two families and children were so different from each other, both beloved to us, and insufficiently described by the raw facts of their diagnoses and ultimate fates.

I imagine this is something like the experience of soldiers returning home from battle. There are things that are difficult to talk about and things that others don’t really want to hear. I feel the pressure of inadequate self-redaction in social situations and slap myself in retrospect. It’s easier not to talk about it at all than to get started, but then the unspoken entity that takes up real estate in my heart and mind growls back, unfed.

Paying Our Dues for Summer

The winter has been relentless and vindictive, the kind of season that makes summer seem like a reward earned through an undeserved gelid penance. It was all fun and games when the snow was pristine and fluffy, but it started getting dreary when the narrow canyons of ice that we have to drive through became encrusted with dirt.

Thus, it feels like we have earned a little summer fun, so we plan on attending a camp for children with cancer. There is one in Maine that hosts the whole family, not just the patient. Although it would be nice to be closer to home, Colin is too young for Camp Hole in the Wall, which was seeded with money from Paul Newman’s famous dressings and pasta sauce. This also means that Aidan doesn’t qualify for the sibling camp, and we feel it would be good for him to have some down time in an environment where people get it.

A family camp will give us a chance to connect with local families and replace the social environment we enjoyed when we were living at Target House. As much as we are happy to be home and don’t need to be in Memphis, we miss the camaraderie and support we left behind there. Parenthetically, we also (begrudgingly) miss Memphis itself. We make fun of it, but with growing appreciation for its soulfulness, namely the city’s capacity to endure suffering but sing a song about it, get drunk and pray in order to shake it off and get out of bed to meet another day.

The tremendous richness of the world is defined between the boundaries of tragedy and elation. However, it all seems relative. My life is experience is somebody else’s worst nightmare, yet I can easily imagine a turn of events much worse than that which I have already encountered. I have known no sweeter bliss than holding my children close, not in a desperate sense but simply to bathe them in love. The joy I extract in being a parent far exceeds any price I have paid for the privilege of watching these people blossom.

The stress of day-to-day living and worry about whether we are doing the right thing (too strict/too lenient/not enough outdoor time/too much candy) evaporates in certain moments. The kernel remains the same, even when everything else vacillates around it. In this way, we are no different from each other.