Full Circle

Colin returned home, nearly a year from the completion of radiation and two months short of his fourth birthday, with a good scan and no trach. Well, we have plenty of trachs, but none actually inserted in him. Anticipation of the possibility that Colin would come home without that annoying, formerly life saving appliance swept away any pre-scan jitters.

This was also our last visit with Dr. DeWire, who will be starting a new position closer to home and sharing her talent and compassion with a new population of patients. Dr. Gajjar seems almost nervous to manage us single-handedly, though I think he will be fine. The doctors both glowed as they marveled at Colin’s many improvements, seeming more relieved than anything that the trach is no longer necessary.

Even Dr. Gajjar marks Colin’s arrival in Memphis with the pressing need to get a tracheostomy in order to proceed to chemo. He always recalls our first meeting by remarking that he immediately knew Colin needed the trach and knew he would have to overcome our resistance to it.

Reversing that procedure completes the circle for all of us and gives our family the green light to take another step out of the breech and away from our life in treatment. For everybody who has walked by our side, this is a huge milestone and another indication that things are easing into this new version of reality that reveals itself day by day.

Since starting school, Colin has gotten increasingly comfortable with his walker, and a few weeks before leaving for scans, he started refusing to use the wheelchair at all. His newfound independence began around Valentine’s Day when he decided to leave his classroom while using his walker (before that, he would leave in the wheelchair being pushed by his tutor). He proudly led his classmates out the door as if the walker were a device of office, not an assistive tool. Once in the hallway, he promptly made for the door and pushed on the handle to let himself out. Since then, we started buckling him into the walker at the car and letting him walk in and out on his own.

More recently, he made his first foray to a grocery store as an independent walker. It wasn’t my intention to embark on this particular adventure, but he started screaming and flailing when I tried carrying him to the shopping carts. “I want my walker! I want my walker!”

Yes, his speaking abilities have improved a lot in the past few months; between that and his increased mobility, his preschool willfulness rears its head quite a bit. Once in Stop and Shop, Colin faced unparalleled access to a sea of brightly colored food options. Store marketers put the most unhealthful (and, to my adult taste, revolting) junk food under the three-foot mark so little hands can add these treasures to the shopping cart.

After so many months of deprivation, not just of food but simply of independence, I couldn’t refuse Colin’s many purchases or make the motherly point of having him put them back to make way for healthier choices. Instead, I apologized in my mind (which is the same as not apologizing at all but with a phantom degree less of guilt) to the Stop and Shop employees who would have to recover the items I redistributed around the store while Colin looked the other way.

Through some diligence and a good chunk of time in the fresh produce section, I was able to keep the equilibrium in my favor. Near frozen foods, Colin went on strike in front of the ice cream. Holding the handles of the walker, he pulled his little feet up and refused to go any further. However, this was when I discovered that he was very easy to transport in this mode and kick-dragged the walker, with him suspended in it, to the check-out lines.

In public, Colin and his walker are quite the oddity, greeted by a combination of horror (what the hell happened to that kid?) and compassionate encouragement (oh, how nice that he’s working so hard and getting out of the house), the latter often vocalized. However, the vision of me forcibly moving a little disabled child inside a rolling cage smacks more like a form of child abuse.

Colin’s obstinance meant that he was going to make his way to St. Jude on foot and that the wheelchair became a baggage carrier. We arrived on a Sunday and made our way to the hospital to grab a bite and visit some of the weekend floor nurses. The typical response once they recognized me was, “Where’s Colin?” I would point backward with my thumb and he would lumber up with a big grin on his face, ready to show off.

“Show them your trick.”

Colin eagerly responds with a running start, followed by a long glide as he picks up his feet. During the trip, he refined his technique by spreading his arms out wide, flying into whatever happened to be in his path. One time, he cruised face first into a metal-encased structural member in the center of the cafeteria. Onlookers gasped in amazement-turned-horror, but he righted himself unscathed, guffawing. Even from behind, I could see his cheeks rise in pure delight and mischief, which I would have predicted anyway based on his penchant for mayhem and near-disaster. After three craniotomies, chemo, yada-yada, smashing into a column ain’t nothin’. He did, however, learn to incline his head down like a charging bull when it looks like he’s headed into an obstacle to at least protect his face.

After our arrival at the airport in Memphis, we had a long wait for the shuttle ride back to St. Jude, and Colin was getting himself into mischief by gliding into the sensor range of the automatic door opener. He loves coasting downhill, which is particularly nerve wracking when downhill leads into traffic, such as the case with the doors that lead out of baggage claim.

In order to keep him distracted with something less hazardous, I asked him if he could give me a ride like he does for his brother. We have a video up on YouTube of Colin walking at Aidan’s school with his big brother standing on the back of the walker. Aidan calls it their circus act. The first time he tried it, I had to suppress my instinct to shriek at Aidan to get off and instead just let Colin decide whether it was a good idea or not. To everyone’s surprise and my relief, Colin enjoyed the exercise and toted his brother all around school. A few other children chided, “Aidan, why are you letting your brother do all the work?”

It turns out that Colin can pull me along, though I have only tested it on a smooth surface with little friction. He drove me around the interior of the airport, and in the very least, it kept him out of trouble while we waited for our ride. During our trip to St. Jude, it became the grand finale to his performance. People were shocked enough to see him striding up and down the halls on his own, much less giving his mother a ride. Maybe the shock was more that I would let him do all the work, but so be it.

Colin’s transformation between the January and April scans has been the most dramatic yet, given his huge progress with walking, talking, and overall sense of wellbeing. Our happy, mischievous, exuberant little boy emerges more with every visit.

Like all children at St. Jude, Colin always enjoyed the attention and affection of the staff. I liked to imagine that people could glimpse his personality, even in his vastly depleted state. If it is true, what they saw was only the light stealing through the keyhole. I remember one medicine room (St. Jude’s all-purpose infusion room/ersatz emergency department) visit where Dr. Bronischer exclaimed in his bright Brazilian staccato, “Oh, I didn’t know he had a personality!”

Indeed, Colin does, and it is extremely satisfying for me to allow him to speak for himself and freely interact with people, rather than desperately hoping they will notice the wonderful little person we have been struggling to hold onto. After all, a parent’s passion comes from the desire to save not just any child but this particular one. This is not to diminish the aim of helping all children (or humans, for that matter) who suffer but simply to say that it becomes personal when the individual affected is part of your circle. The circle is never more closely knitted to your heart than when it is your own issue.

I have often marveled at the skill of St. Jude’s practitioners at looking at and responding compassionately to a sick kid in front of them but also seeing the vibrant human being who may be straining under the weight of illness. Most children seem to find the opportunity to glow, but this practice has to be more difficult and require some patience in cases where the effects of treatment are particularly harsh and unrelenting.

Today, none of that is necessary. Well, patience is, but only because Colin’s stubbornness emerges in almost equal measure with his charm. He certainly did not care for the rule that required him to leave the sedation recovery room on wheels – and not the wheels of his walker, mind you. The concession was to put him in a red wagon like the other kids, and certainly not the dreaded wheelchair.

Similarly, at several points during our trip, he pushed himself to exhaustion and both refused to be carted around and stopped walking. This resulted in me pushing him around in the walker or, at its worst, physically carrying him while trying to manage both walker and fully loaded wheelchair (don’t ask; it’s not a pretty sight).

Colin’s attitude toward his walker is no accident, and it comes completely from within. As a matter of convenience, it would be nice if we could get him back in the wheelchair on occasion, but the boy will have none of it and we have to accommodate that. It is exactly this determination to get better and return to normalcy that has brought him out of the depths of disability.

Just as important, Colin has thoughts and opinions that he is increasingly able to articulate. For example, he has been expressing his dread of Darth Vader coming to take him away. We have deduced that he is having nightmares and have tried to demystify that ominous figure by making him seem more familiar and less threatening.

Darth Vader has a trach, we explain to Colin. He must also have a g-tube. After all, the man suffered traumatic injuries after falling into lava, and he looks pretty rough without the helmet on. It’s possible that he is even ventilator dependent inside of that crazy get-up. While Colin accepts this expansion to the Vader mythology, it does little to assuage his fear.

At a St. Baldrick’s event in the spring, we met the Darth Vader of the Connecticut garrison of the Connecticut 501 division of storm troopers (these groups visit children’s charity events and hospitals). Darth was kind and surprisingly chatty, his voice a far cry from James Earl Jones’, and he insisted that he is mis-portrayed in the movies.

If anything, Colin’s focus has shifted somewhat from his fear that Darth Vader will take him away to his fear that “bad guys” will take him away. I realize that no amount of counseling is going to wipe away Colin’s natural anxieties, and though there is part of me that tries to find a connection between bad guys or Darth Vader and his brain tumor, I sincerely believe this is part of his normal development.

Colin’s concept of normal is just different from that of other children, but not in a way that appears especially damaging. Soon after Dr. Thompson removed the trach, Colin sadly declared, “Dr. Thompson’s not a nice guy.” I deduced that Colin missed the clear speech he was accustomed to having by using the Passy-Muir valve on the trach.

Especially in the first week or so, before the stoma (the hole for the trach) shrunk down enough, it was difficult if not impossible for Colin to speak because too much air was moving out through the hole instead of flowing up past his vocal cords. We tried rigging all kinds of dressings to create a better seal against the hole and allow him to talk and eat. After only a few days, he was able to talk, though with a lot of extra breathiness.

With the reinforcement of positive feedback from Colin’s friends in the brain tumor clinic at St. Jude, he quickly embraced the disappearance of the dreaded trach. When he went back to school, he proudly pointed to his neck, showing off this new development. I have long noted the surprising disparity between our anticipation of an event from the reality of it. For this reason, I have largely abandoned the practice of attempting to predict what an experience will be like, since that gap is often disorienting and disappointing. When looking forward to the prospect of having the trach removed – not removed for the sake of cleaning, which I used to do all the time, but removed in a very final sense – I surmised that this would be an emotional moment.

I variously imagined Colin coming out of surgery with a dressing covering the stoma in place of the old familiar trach, or of Dr. Thompson coming out and talking to me in scrubs and telling me that the deed was done. There would be some point at which the epiphany that we were done with the damned thing that would overcome me to the point of tears.

Frankly, I should have learned my lesson, and the truth of the matter was quite a bit less sensational and even comical, thanks to Dr. Thompson’s antics. The decision to definitively attempt decannulation came once he entered the exam room for our pre-op meeting at St. Jude, where he immediately recognized by looking at me (especially in this day of high technology, medical professionals are constantly enjoined to “look at the patient,” but in some cases, looking at the patient’s mother tells a deeper story) that Colin was doing remarkably well.

It is true that during the previous three months since our last ENT visit, Colin’s swallowing took another noticeable leap forward. We didn’t have another swallow study done, but we could tell, clinically, that he was swallowing much better. Most importantly, we had stopped suctioning him as a matter of course. This means that he is able to completely manage his own secretions (i.e. swallow them, as all of us normally do, into his stomach), even in his sleep.

For another, Colin’s ability to eat had jumped up tremendously. We weren’t seeing evidence that he was aspirating, and the habit of eating small amounts of food several times a day significantly improved the muscle strength of his jaw, tongue, and cheek. From a quality of life standpoint, this was the biggest improvement since Colin first lost the ability to eat after his second surgery.

Colin has always loved food and was aggrieved when he realized he could no longer take anything by mouth. His frustration followed him through treatment, where we all hid our own eating so as to spare him the reminder of his own deficits. Back in Memphis, on the days when Aidan stopped by after school, he was accustomed to bounding behind the big recliner in Colin’s hospital room in order to have a snack in hiding.

Access to food has made Colin a much happier human being, which is why we have accepted the potential risk of aspiration in order to give him a profound pleasure. This has become trickier with the removal of the trach, since we have yet to create a satisfactory dressing with a seal comparable to that of the Passy-Muir valve. In addition, it will take a few months for him to adjust.

At any rate, our original plans to decannulate (remove the trach) Colin included the expectation that he would have a granuloma (tissue growth from irritation) above the trach site that would have to be burned off with a laser. This meant that the decannulation itself would take place about six weeks down the road, which we had already arranged for back home.

However, upon examining Colin (and me), Dr. Thompson concluded that the granuloma, if any, would be minor. Even with laser surgery, he planned to remove the trach on the same day, which is not his usual practice. Over the previous month or so, I had hoped that would be true (Angela, our wonderful speech therapist from St. Jude, suggested that he didn’t show any clinical signs suggesting a significant granuloma) but feared that my opinion was informed more by my desire than truth.

Dr. Thompson is fully aware of our history with the trach and the traumatic incident when Colin plugged off (the trach became occluded with dried secretions) during the middle of night and he was unable to breathe. This happened under the care of a nurse who was watching him at Target House while we slept, though she woke us up when she discovered him in respiratory distress, glassy eyed and blue from lack of oxygen. After I revived him and we took an ambulance ride to Le Bonheur, Dr. Thompson stopped in and was fairly nonplussed about the whole incident (Drs. Gajjar and DeWire did not look equally calm when we met up with them back at St. Jude a few hours later; if there’s anything oncologists hate more than cancer, it is losing a patient to something other than cancer).

As casual as Dr. Thompson may have been about it, he realized as well as anybody the real risk of death in small children just from having the trach, and he knew of my justifiable anxiety to get it out as soon as medically warranted. Colin’s ability to manage secretions was paramount; without it, the trach was there to stay.

In the pre-op area, I was chipper with the nurses, happily rattling off Colin’s medical history, as Colin sat quietly watching Chuggington Station. He remains inordinately cooperative and calm in medical situations. For whatever reason, he doesn’t get nervous about it, even though he really hates getting poked with needles (he calls any needle a shot, including I.V.s, which are notoriously difficult to get right for him).

A number of well intentioned people came by to tell me how things would proceed. They explained that Colin would likely not be actually decannulated, not knowing my conversation with Dr. Thompson and the plan. What was meant as a kindness was just an annoyance as I retorted that the trach was coming out. Really.

Typically, the doctor has anesthesia apply light sedation and then scopes to see how everything is working. Under heavier sedation, he can zap the granuloma with a laser. I knew the whole thing was going to be fairly quick, but I had no idea how quick. It turns out that there was, in fact, no granuloma to speak of. Dr. Thompson scoped, took a few pictures and a video, and let Colin wake up.

The right vocal cord is still paralyzed. Any slight movement is caused by the Bernoulli effect as air moves past the two cords and the non-functional one draws in towards the good one. Dr. Thompson explained that there will always be a slight gap at the bottom of the cords that allows some degree of aspiration. “But he’ll be fine, just like me,” he chirped, beaming.

Dr. Thompson himself has a paralyzed vocal cord and functions fine, though his voice is a bit hoarser and weaker than it otherwise would be. The day we met, which was also the day that he performed the tracheostomy back at St. Jude, he explained that he adamantly refused a tracheostomy himself and has fared fine since. I told him that he’s a terrible salesman for his services, but his personal experience and affinity for patients with similar deficits has been a boon. Not only does he have a unique perspective, but he actively uses himself as an example of how well a person can do with only one working cord.

Colin’s biggest problem wasn’t really the one vocal cord anyway but the combination of that and his inability to swallow properly. We just had to wait until his swallowing improved enough to warrant removing the trach. At this point, we’re long past shooting for “perfect” and have moved onto embracing “good enough.”

After Dr. Thompson showed me the video and pictures, he said he would return after Colin had woken up enough for us to take out the trach in the recovery area. In the meantime, I had arranged for an informal consultation with Dr. Boop, the neurosurgeon, to assess the metal plates that were used to hold the bone together on the back of Colin’s head.

Even by the time Colin had his third surgery, he was suffering from enough generalized edema that you couldn’t tell the plates were there. Over the summer, we noticed strange bumps on the back of his head and our neurosurgeon back home explained that this was from the plates. By the time the spring rolled around, Colin was complaining about them, feeling around the back of his head, and they protrude so badly that you can see the bumps if you look carefully.

At this point, the plates aren’t serving any useful purpose, though normally you would leave them in place if they weren’t causing a problem. Since Colin finds them annoying (and Aidan finds them creepy), we’ve decided to have them surgically removed at the end of the summer. However, we wanted to get Dr. Boop’s blessing, since he’s the one who put them in.

As it turns out, the best way for us to see Dr. Boop was to have him stop over during our stay at Le Bonheur. He stopped by between surgeries, which happened to be right after Dr. Thompson came back for the decannulation. Dr. Boop came in with a big smile, happy to see Colin looking so well (even in post-sedation) and very pleased to see the walker, even if he couldn’t observe it in use.

I greeted Dr. Boop and caught up a bit, only to find Dr. Thompson grinning mischievously. “Where’s the trach?” he asked, holding it up in one hand. “I wanted to see how long it would take you to notice.”

“I wanted to take a picture!” Oh, well. One photo op missed, one emotional moment avoided. Dr. Thompson robbed me of whatever catharsis I had planned myself for to instead deal with the kind of mundane reality that has dominated my life. How the hell do we manage the blow hole? (Answer: the boring details would put you to sleep.)

I took a different picture, one with Colin and his two doctors, and we were moved to a room in the shiny new hospital. I would say we were whisked away, but hospitals are only good at whisking when one has a whisk-worthy complaint, which Colin fortunately did not have.

Colin rocked the overnight; as the medical geek I have become, I took a picture of his pulse-oximeter and the patient, both the picture of perfection. We frantically made it home the next day on our scheduled flight, in spite of the circus act of me pushing the child-suspended-in-walker with one hand and a heavily laden wheelchair in the other.

We had just enough time to parade a trach-less Colin around the campus and catch our ride to the airport. Again, the hectic nature of our departure only served to distract me from the reality that Colin took a huge step towards normalcy. For one thing, I didn’t have to cling to his medical equipment on board the plane, and this makes future trips back to the Jude much less onerous.

To be honest, normal is a little scary. I welcome a return to normal activities, yet I know that we cannot release the tether from our new companion, ependymoma. While I can pore over statistics, much like I did when Aidan was a baby and I researched statistics on the primary risk period for SIDS (by the way, much more difficult to find than one would imagine), there is no point at which I can turn my back on cancer.

Normal is scary largely because it feels very unappealing, not the part about camp and birthday parties and so forth, but the part in which we lose touch with the fragility of human life and forget that our precious children will die. I wouldn’t miss the fear, but I would miss the sharp bas relief of our lives, compared with the Flatland (I used to be a math geek – go look it up) slideshow of idyllic modern family life that we swam through in times past.

Ependymoma does not offer the luxury of amnesia, since it can return after diagnosis becomes a distant memory and otherwise morphs into another artifact of parental worry. In the day-to-day, this can be a blessing more than a curse. I have found no greater bliss than quiet moments with my children. Colin is charmingly prone to saying, “I love you, Mom.” Aidan, who swears that he will let me snuggle him, even when he grows up, was finally coerced into putting that statement into writing (on a Post-It note, of all things).

So, we move. Onward, upward, into oblivion, wherever the winds may take us. Each breath is more than we were promised, and each step takes us closer to our final destination.

What is the meaning of life? Maybe it is the moments that come to us rather than the ones we imagine will have great importance. After all, surprises are so much more fun than anything I could ever plan, as two dark pink lines on plastic strips have taught me.