Ode to Lady Liberty

“Give me your tired, your poor,
Your huddled [brain tissue] yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tossed to me,
I lift my [high-energy photon] lamp beside the golden door!”

On Wednesday, February 24, Colin had his first radiation treatment. We had originally expected therapy to begin a week sooner, but the complexity of Colin’s plan delayed the beginning of treatment. Dr. Merchant described the shape of the field as “The Statue of Liberty,” explaining the adaptation of the above excerpt from Emma Lazarus’s famous poem, “The New Colossus.”

The intersecting paths of multitudinous toxic beams of electrons, our own Lady Liberty’s imprisoned lightning, shadow the original tumor bed. Dr. Merchant pointed at no less than a half-dozen spots around Colin’s head where the IMRT machine will deliver its payload for 30 treatments.

We will perform another MRI near the end of therapy to the tumor bed in order to determine where to apply the final three doses that are aimed at zapping the residual tumor. The disputes over what is and is not residual tumor in the latest scans will be moot, since radiation is expected to “clean up” the scans and clarify what is tumor, according to Dr. Merchant.

Colin also had a Monday MRI and MRV (venous) to determine the disposition of the blood clot. This took place immediately after his morning radiation, making for a longer sedation but causing no disruption to therapy. The verdict: the beginnings of “recannulization” around the clot, meaning that blood flow is improving, though the size remains the same.

(Not So) Still Life

We are reassured that therapy is on course though of course would rather hear that the clot is smaller. At least now our concerns about an imminent clot-related problem are, if not eliminated, at least alleviated. Looking at the various risks of Colin’s medical situation is like an art class in perspective.

The fungal endocarditis, while still in the picture, has receded into the distance. The newer thrombosis has gotten smaller, looming less significant behind the foreground of radiation and whatever other issues arise.

Speaking of other issues, Colin has had two new events that popped up over the past week. First, he had a mishap when Dad went to pick him up on Saturday around dinnertime. Colin had scooted up to the edge of the couch where I was sitting and was fussing about food (no surprises there). Dad pulled him back before picking him up, but Colin’s right leg ended up under the couch still and got caught on the edge of the couch.

Colin was in a lot of pain and we gave him morphine but iced it and put him to bed. Our initial concern was bleeding (from the anti-coagulant Lovenox; his platelets were great at 330,000). When he awoke in pain that wasn’t managed well even with extra morphine, we took him to St. Jude for evaluation. There, they determined that it looked like soft tissue damage but just to continue providing pain relief.

Catching a Break

Colin didn’t sleep well through the night and was still in pain that broke through more morphine than we have ever given him. An x-ray at St. Jude of both legs and ankles turned up a torus fracture at the top of his tibia. Fortunately, children’s bones are more pliable than adult ones, and are less likely to break all the way through.

We don’t know whether he was more susceptible to a break because of osteopenia, a weakning of the bones from chemotherapy, or if this would have happened anyway. It’s a surprisingly “normal” childhood mishap that generated some confusion when I took him to Le Bonheur to get a cast put on.

When the triage nurse first asked his diagnosis, I said, “anaplastic infratentorial ependymoma,” and she looked at me cross-eyed. “Give me a body part,” she joked. “Brain tumor.” Okay, too detailed.

When the orthopedic surgery resident asked, “What are you here for?” I responded, “A broken leg.” He meant, why were we at St. Jude. “Brain tumor.” Strike two. “Diagnosis?” Look, you should have been there the first time somebody asked me that here.

Our experience at Le Bonheur’s emergency room was definitely the smoothest so far because we have become a known quantity. Various members of the staff recognized us and were quite nice. They do appreciate parents who are helpful and know how to care for their children

The hospital takes some pains to separate St. Jude patients from the rest of the population for fear of giving them hospital-contracted infections. With advance notice through the doctor on call at St. Jude, we are able to avoid any significant wait before going inside and we were promised a quick turn-around time to get us home lickety-split.

Between the pain and morphine, Colin was hazy but awake as we went through a second x-ray (right leg only) for the orthopedists to look at and then the inevitable cast. I have never seen a cast being constructed, so it was independently interesting and Colin fortunately tolerated the procedure well. With no disruption to the overall integrity of the bone, there was no need for surgery or resetting (yippee!), only the inconvenience of immobilization of the right leg for three weeks.

In the balance of things, it’s not the worst thing, but given his physical improvements and new mobility (scoot-scoot!), it is disappointing that we have a new limitation to work with. After the cast went on, the resident used a cast saw to cut slits up both sides of the cast, allowing flexibility for expansion if there is any swelling.

I was initially concerned about the cast saw, which sounds scary enough to me and I think I would flinch at the idea of a blade coming so close to my skin. However, we didn’t mention anything of the sort to Colin and the doctor simply told him it was a really noisy vacuum, which is true enough. (Really noisy vacuum + sharp blade pointed at your flesh.)

As luck would have it, Colin loves vacuums, so this worked out well and he actually enjoyed the cast saw part of the process. This was terrific until I realized that it was spitting off particulate matter and had to be careful to cover the trach (by chance, I was already pretty much covering it with a tissue).

This is an obvious yet easily overlooked fact about trachs: one has to avoid small particulate matter. There was a craft-related incident involving glitter that really has left me with a bad taste (figuratively, though nearly literally) regarding loose glitter, probably forever. I’m not the only one, as the Friday craft lady calls it “the g-word.” One day when we were inpatient, one of the other children was doing a Play-Doh-and-glitter craft that was fun but got glitter over everything, including the participants.

Although I was careful about getting none in Colin’s trach, I didn’t appreciate how long glitter sticks around until I ended up trying to wipe it from his skin, careful not to make a shiny fleck dance into the trach, for days after. Not long after, at an off-campus Christmas party to which the St. Jude kids were invited, we had to fend off a little well meaning but hazardous holiday cheer. A woman in a just-short-of-inappropriately-sexy fairy costume was ready to grant a wish to Colin, “magic fairy dust” in a dispenser poised in one hand, ready to sprinkle some on her palm and blow a delightful glittery cloud in our direction.

“No glitter!” I exclaimed in a panic, waving my hands like a maniac Scrooge. It’s funny in retrospect, since she didn’t manage to deliver her payload, but I can only imagine giving Colin mesothelioma from poor monitoring of trachward activities.

Good as New (Sort of)

In the scheme of things, the broken leg is not so bad and fortuately comes with few mid-term complications besides mobility limitation and more back problems for us. Once the cast was on, Colin’s pain virtually disappeared and he promptly began joking with the resident, roaring at him, stuffed tiger in hand. Within a half-hour, he was asleep catching up on needed rest.

Errors in management happen all the time with varying effects. Colin’s g-tube has come out twice (once replaced by me) and, more horrifyingly, the g-j-tube came out once. The long strand of the jejeunal tubing looks weirdly organic slipping out of his belly, a rigid tapeworm with a black line running down the length, unlike the relatively innocuous and compact g-tube mickey button. More recently, we discovered that the g-j-tube can simply fall apart, and I’ve become somewhat expert at reassembling it in situ as feeds or stomach juices (or whatever!) dribble out.

A few weeks ago, I turned on Colin’s feeding pump without checking the rate. The rate had been turned up before the pump had been turned off last, and his feeds were going in at four times the normal rate. Before too long, he had violent vomiting and diarrhea caused completely by my carelessness; the jejeunum has no capacity to “store” food, unlike the stomach, so the excess causes an abrupt reaction since the feeds to move elsewhere. Fortunately, the problem was pretty much fixed by turning off the pump and giving him a good suction, though we took a quick trip to the medicine room for a once-over.

The Bad Kind of Normal

Accidents happen, and it seems that everybody who hears the story has a similar tale of accidentally damaging a child, usually a healthy one at that. It is easy to forget, while dealing with cancer, that non-treatment-related problems can occur. I remember in the distant past hearing of St. Jude patients who have had to go to Le Bonheur for broken bones (this, in fact, is the canonical example presented to families of an instance in which an emergency will call for a trip there rather than St. Jude). However, it seemed so outlandish and careless as to be completely irrelevant to our circumstance.

Colin has not been happy about the cast and asks for us to remove it, as it inconveniences him. We have to explain that it keeps his leg from hurting and have tried to make it clear that this problem is unrelated to the thing in his head that has caused him so much trouble.

In recent days, the cast is the least of Colin’s problems. The consecutive days of anesthesia and radiation, compounded by the rigor of the leg break ordeal, have taken their toll on his system. Since starting radiation, he has required oxygen at night, something we have not seen since chemotherapy (excepting the immediate post-operative period in January).

Into the Woods

We realized that this impaired respiratory status meant something, if only that he was creeping closer to the edge of a bigger problem. We have also been anticipating the possibility of radiation-induced nausea, a problem that he seemed to be escaping. However, after a few isolated incidents of vomiting, Colin started up on Tuesday night with a bout that would not seem to stop.

I tried to settle him into bed to rest and suctioned him, as he was obviously struggling with aspirated stomach contents that variously bubbled and shot out the trach. This is always a dangerous sign and usually his cough is extremely strong at these junctures, as we have seen throughout chemotherapy.

However, the level of oxygen in Colin’s blood dropped alarmingly low and it was not staying in normal levels, even on a higher rate of oxygen from the concentrator at home. It was time to return to the medicine room for a likely admission.

A chest x-ray revealed fluid in the lower right lobe of Colin’s lungs, indicating aspiration. No surprises there, and it was a quick ticket for admission as well as a full work-up.

Fortunately, Colin is still on schedule for radiation, as long as the anesthetists feel comfortable sedating him. Respiratory issues are the most likely road block to sedation, and we probably headed off a true pneumonia at the pass.

Although the resident described this as pneumonia, it seems like there is no way that the spot on the x-ray is an infection, since the aspiration was only hours before. Colin is now getting an aggressive regimen of antibiotics to stave off any infection, and he hasn’t had a fever at all. All of the blood and other cultures have been negative.

Tuckered Out

Colin’s problem right now is more fatigue than vomiting, although we are seeing nausea reminiscent of chemotherapy and our old dreaded friend cisplatin. I am surprised at the persistence and vigor of the nausea, though I also understand that the brain tends to adjust to the insult of radiation and the nausea improves after the first week or so. Even so, there are no sure bets, especially when Colin is involved.

Fatigue seems to be preventing Colin from coughing well. As much as suctioning is a great tool for clearing out the trachea of aspirations, it does not replace coughing which, if nothing else, can bring fluid closer to the area where they can be suctioned. Deep suctioning irritates the trachea and generates even more secretions, exacerbating the problem. Although sometimes necessary, it much be performed judiciously.

Colin has been exhausted and has been sleeping like he just got off a flight from Asia. He has awoken enough to be a little playful and somewhat demanding but hasn’t even been able to make it through a movie. The cast on his leg, although it draws a lot of attention from his friends on the floor, is the furthest thing from his mind.

We will remain in the hospital until this issue resolves, which will presumably be within a few days. Colin’s lungs seem in better shape, but the fatigue needs to improve so he can protect his airway. Another child could just sleep it off on the couch, but in Colin’s case, it poses a serious health risk, as evidenced by his most recent adventure.

Deja Vu All Over Again

Returning to the second floor at St. Jude has been familiar and strange all at once and yet again reminiscent of our arrival here. At the time, he was suffering from respiratory issues and had chest PTs around the clock. I was yearning for the sound of a respiratory therapist creeping into the room in the middle of the night to pound on Colin’s back.

I fondly recall the peace and quiet of the room here, where these disruptions were a pleasant symptom of people here taking care of our banged up little boy. At the time, I was overwhelmed with a sense of relief that we were on a path to moving on in Colin’s treatment (finally!) and in the foreign hands of an institution that promises to take care of everything.

Nothing is so simple as that, yet it is true enough. Perhaps I am suffering from a combination of early onset nostalgia and some homesickness.

Visiting Lady Liberty

Work recently took me, if not home, then close enough to count. I spent several days in New York, mostly in the confines of the worn but serviceable New York Hilton. It has won me over by familiarity, though there is little else to recommend it aside from the location.

The weather was seasonably dreary and not conducive to outdoor exploration, not that I had time for that anyway. Even so, I was easily reminded of the workaday-amid-tourism appeal of Midtown Manhattan. New Yorkers painstakingly ignore and circumnavigate gawking, disoriented visitors while the latter labor through the chore of selecting which of the multifarious City delights they will enjoy.

On one of the rainy mornings, I gazed down at the sidewalk, watching the semaphore of umbrellas dancing below. No matter how high up, you can hear car horns and the frustration of early morning traffic. At night, I listened to a street vendor banging and rolling his cart down the street, the sounds echoing up the canyon of skyscrapers.

The best part of New York is that it is an egalitarian mosh pit of humanity. During my short stay at the Hilton, there was a Jewish fundraiser that drew Senator Schumer, whom I literally nearly ran into. At first, I thought he was another dark suited executive from the conference I was attending but quickly recognized that he was familiar to me but not vice versa. It seemed like a typical New York moment, a casual brush with sort-of fame (I’m not sure if politicians count).

A day-and-a-half later, the same space was occupied by a startling mass of foreign students, apparently from all over the globe. I have no clue what unifying force brought them to the Hilton, but they filled their allotted half of the floor in sharp contrast to the staid group discussing retirement in the other half. Again, a New York moment that I tried to relish as I stood on the escalator struggling with the different cultural bathing standards of some of the Big Apple’s visitors.

Escape from New York

I flew back on Tuesday night before Colin started radiation, luckily escaping a predicted snowstorm that threatened to throw off my travel schedule. My flight was delayed but I figured on a late arrival. Upon checking in, the self-check computer told me that I would miss my connection and there were no more flights to Memphis to follow.

In a panic, I dashed to a human being behind the United counter. Normally I’m not uptight about these things, but I really have to get back to Memphis because my kid is starting radiation tomorrow!

I am guessing this is the first time the ticket agent had heard this plaint, but he acted nonplussed as he clicked away at his keyboard searching for an alternative. Don’t worry, he assured me. There was an earlier flight that had been delayed, and I was second on the standby list.

Clutching my boarding pass, I paused before running to security and the gate. Do you want to see a picture? Another agent had meandered over and the two of them admired pictures of Colin (and Aidan) on my phone. More clicking at the keyboard, then a new boarding pass.

Here, you have a seat. You don’t have to worry about anything.

I can’t say that this is an exclusively New York phenomenon, and it certaintly could have happened anywhere. Even so, it is something that people who don’t understand the City find surprising. Strangely, it is exactly the sort of thing I expect, yet one can never predict when it will strike. For whatever reason, I am especially touched by the fact that it was Colin’s picture that compelled the agent to move me off the standby list (I would have gotten on the plane if he hadn’t done that, yet he was reacting to my anxiety about getting on the flight).

Perhaps that is also a characteristic New York response: I’ll do something reasonable for you as I would for anybody who walked up to this desk; now that I have reason to believe your story, I’ll go the extra mile. New Yorkers are naturally dubious of strangers because they are just that, an unknown entity. However, it takes very little to crack the shell and expose the humanity.

As much as I laud my New York experience, I will add that they do not suffer fools lightly there, either. Moments later, a very testy TSA employee admonished me for mistakenly grabbing a bin from a cart that he was still maneuvering into place. My enjoyment of his gruffness was completely irrational and more symptomatic of my enjoyment of home base than anything.

If there is any one lesson we have learned in our adventures in pediatric cancer it is that people want to help, no matter where they are. More often than not, they don’t know what to do or say, but the intention is there. Recently, there was a woman with two children who saw me in the grocery store with Colin (this is Colin’s only trip to a grocery store in forever!). The mother told her children, “Smile at the little boy” in an admonishing tone, meaning, “Don’t stare at the kid with cancer.”

I felt an overwhelming sense of compassion for her as she struggled with discomfort and ignorance of what to do or say. There is no “correct” response, as that varies depending on the audience. Thinking on it, I am at a loss as to how to react in that situation, but she just wanted to be nice and she wanted her kids to behave appropriately, not really knowing what either of those things should really look like.

How boneheaded would I have been in the same circumstance? (Answer: very)Even now, I have to feel out how to communicate with other families in a way that suits their situation and approach. To some degree, it’s like making a Polish joke, where you get permission to cross lines if you’re from Poland.

It is the country nobody wants to enter, but there is no choice in the matter. Even if Lady Liberty and her imprisoned lightning free Colin of ependymoma, we will never be able to give up our citizenship. We fly a new flag and sing a new anthem. Our only reluctance was to start, not for lack of passion to continue.