Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

October 20, 2009

GTA: Memphis

The big news is that Colin is set to discharge on Tuesday morning. We all (doctors included) feel this is important for the whole family because, once Colin goes back inpatient for chemo on Friday night, he will likely stay for at least 10 days if not more.

The better Colin feels, the more obvious it is that he needs to leave the environs of the hospital. His mental status (we have been in hospitals too long to think this is a normal way of expressing it) is improving steadily, which is incredibly encouraging and at times distressing.

The distress comes into play when he is uncomfortable. Between being more responsive to pain and more physically able to respond in obvious anguish (rolling, crying, tensing up), it is excruciating to see him in discomfort. Kiyoshi and Perry’s visit this weekend was marred by one such event, when an abrupt episode of pain caused him to writhe and turn himself over onto his knees.

From a physical therapy standpoint, it’s great that he can get himself onto his knees on his own. However, it’s something he typically does only when he is in pain. Fortunately, a dose of morphine seemed to do the trick, though belly distension and tenderness made the doctors scratch their heads a bit.

Given that Colin had already endured a battery of tests during the week and otherwise seemed to be doing so well, they deferred any judgement until the impending consultation of the gastroenterologist, due for a visit on Monday.

In the meantime, Mom joined Aidan, Kiyoshi and Perry at the Memphis Zoo, a charming and surprisingly intimate zoo where most of the exhibits keep the animals quite close to the people. We (naturally) got a lot of mileage out of replicas of panda poop near the panda exhibit.

The boys also enjoyed the sea lion show, which was well choreographed. Aidan was impressed by the fact that the animals listen to the trainers. All of the aquatic exhibits are designed for easy viewing, with the water level quite high. We got a prime view of the polar bears swimming, black pads flattened against the glass as they pushed off for another lap around the enclosure.

However, the boys got the most delight from a big bubble of glass that protrudes into the sea lion tank. Just the right size for children, it allows them to push the boundary of reality and cavort with the animals, though they really only cared about cavorting with each other.

The zoo is very well designed with contemporary exhibits that replicate the animals’ home environments. There is a brand new Grand Teton area with  grizzly bear cubs (reportedly; we didn’t see them), wolves, elk, and fish. The pandas live in a well appointed pagoda that also includes an entertaining langur area. Langurs are a playful primate with silky black hair and long tails.

The trip to the zoo was also a rare venture to a normal family destination, something that had nothing to do with St. Jude. During the sea lion show, there was a skit involving recycling with the expected moralizing on the importance of recycling and not littering. The emphasis on the latter is to protect wildlife, many of which can consume and be harmed by otherwise benign seeming litter.

There is hardly a more anti-recycling environment than a hospital. Items that are normally reusable are considered disposable there, with the emphasis leaning heavily toward the control of infection risk rather than environmental concerns. Contextually, it is of course appropriate and necessary, but it’s almost jarring to be reminded that such things as recycling bins still exist (and that one ought to actually use them!) after a long stint in the dispos-o-rama.

Of course, it is nearly impossible to escape St. Jude, even at the zoo. In the sea lion exhibit, a young blond woman, compactly pregnant and herding two young children, asked, “Aren’t you Colin’s mom?”

I stuttered my response, trying to place her (I couldn’t) and desperately looking at her two charges for evidence of diagnosis or treatment. They both had full heads of hair and there was no sign of neurosurgery, limb sparing surgery, or any other medical treatment (no dangling Hickman lines, outpatient arm band, blood band, etc.).

She mentioned she was working the weekends, but in an offhanded manner that suggested she was using the term “work” as a euphamism for the overnight hospital shift. After I awkwardly asked about her patient child, she explained that she was a nurse (not one who has ever had Colin).

She did work both weekend nights and reported that her children enjoyed the zoo. It created a bit of awkwardness, mostly because I couldn’t place her as a nurse (context! context!) but perhaps also because she probably wasn’t supposed to identify me as the parent of a patient out of the hospital.

Of course, on the latter point I don’t mind at all and it’s actually nice to see a friendly face while out in public, even one that I didn’t immediately recognize. It makes Memphis seem less foreign and more like home, since it’s normal to run into people one knows while at the grocery store or zoo.

Memphis itself is an odd place and, for us, completely formed around the nexus of St. Jude. This is probably true for many families, and our perception of the city is greatly colored by the fact that St. Jude is embedded in urban decay. There are certainly nice parts of the city, especially the area around Rhodes College, but the demarcation line between wealth and poverty is often starkly abrupt.

The transitions, or lack thereof, are reminiscent of Grand Theft Auto, not the one that is based on New York and is thus a simulacrum of a real place but an older version that represents a more generic amalgam of city elements. Pedestrians walk into the street with little concern about traffic, even when carrying or pushing small children.

The driving can be similarly erratic, with cars jutting into traffic, pulling out indiscriminately, or shifting lanes for no apparent reason. When playing a video game, one can shout that such behavior is an unfair artifact of programming that does not adequately reflect real life, but Memphis drivers have no such excuse.

Grand Theft Auto actually spares one the more gritty details that Memphis fails to, such as a man urinating in a public park in the middle of the day. Of course, our observations are based largely on the commute from Target House to Aidan’s school and St. Jude, all within the depressed downtown area.

The poverty is nonetheless quite extensive and easily identifiable by the seemingly ubiquitous check cashing services, pawn shops, gun stores and liquor stores. The best named of these is the Little Brown Jug family of stores (beer and liquor, separate either by state law or to better stratify clientele).

The profusion of disenfranchised people in this area is alarming but also grounding. There is no room for self pity in this world when there are so many people so badly afloat. We remain a family, intact if struggling in some ways. Yet who doesn’t struggle? If it isn’t cancer, it is something else. Cancer does not threaten to do any more than life itself does on any given day.

We are lucky that our moments include more time with Colin as an active, engaged member of the family with his own demands, joy and pain. He is so much more the Colin that we knew before his first surgery, spending hours playing with a single toy or laughing at his brother or a silly fish.

Aidan benefits from seeing Colin improve, and we deeply feel the need to bring the boys together at home. Monday, we awaited the arrival of the GI doctor who would tell us more about Colin’s diarrhea and our best strategy for helping him now and, importantly, getting him off of the TPN. However, the hours passed and no doctor showed up. The nurses had no information on a plan or schedule.

We had made it clear that we wanted some kind of GI-related plan before discharge, and the utter absence of the long-promised consultation was unbearable. At 8:30, it became clear that no doctor would appear. In deep frustration, I looked up the number of the GI specialists myself and called their service.

Bear in mind that we are nearly forbidden from seeking outside consultation without St. Jude’s blessing, so to speak. However, under the circumstances, we felt we had license to make the call and got a return call from Dr. Eschen, who had seen Colin before and recommended the G-J tube. I only kick myself that I didn’t call during business hours, but it is easy to fall into the trap of internatl information dissemination (or lack thereof) at St. Jude rather than simply taking the bull by the horns. Too much of the latter can offset the balance, and we respect and recognize the need for systems and rules here — just not when those systems and rules run counter to Colin’s needs.

Though we have no clear answer why Dr.Eschen’s partner did not see Colin today (we are fairly confident that he was on her list and know that we were available during that time), Dr. Eschen did clarify a number of things for us. First and foremost, he said that Colin’s intestines have not lost competency, since he hasn’t lost weight. Fortunately, this is not one of Colin’s issues!

While the TPN is a fine short-term fix, it cannot continue for very long, and he said that we probably should try trickling in the Peptamen Jr. again, increasing if he tolerates it. The episodic diarrhea is likely caused by chemo and antibiotics, but the common brown goo is probably a normal product of digestion, especially given the input.

We are anxious to get Colin off of the TPN because of the risk of line infection and other complications, and we look forward to the official visit from Dr. Eschen’s partner on Tuesday (presumably). In the meantime, we are empowered with better information and a better strategy moving forward, as Dr. Eschen agrees that we need to stay in close touch with them regarding Colin’s progress.

Also this week, Colin had the placement of a different (shorter) G-J tube, audiology test, and MRI/lumbar puncture scheduled. Given that this is his “good” pre-chemo week, we requested that the non-time-sensitive items be pushed into next week. The G-J tube placement is already off the schedule and they are looking into the audiology test.

The MRI is another matter and one that is alternately exciting and nerve-wracking. Finally, we will get a chance to take another peek into Colin’s head and see how the chemo is working. Dr. DeWire is quite excited about it, though not for any particular rational reason but only because Colin is clinically doing so well. Even over the course of several days, she sees improvements in his neurological exam.

Even if it isn’t rational, it is reassuring, and it perhaps makes the MRI less intimidating. But before we get to Friday, we get to go home.

3 Comments »

  1. Hi guys — glad to hear that there is a bit of normal still around. We went to New Orleans recently and went to their zoo and aquarium and insectarium, and highly recommend it as a road trip when you need one. Love to you all. And the new site is great. If you do make it north for the holidays, we’ll try and arrange for a trip ourselves. Karen (and Mateo)

    Comment by kgraubar@nd.edu — October 20, 2009 @ 6:15 am

  2. Hi all- still pulling for you.

    Comment by Ken — October 23, 2009 @ 10:05 am

  3. The day at the zoo sounds like it was a nice break from the norm. Hopefully this good day will usher in wave upon wave of positive events in Colins health and diagnosis.

    I can say that with the methotrexate the dizziness and nausea is similar to being on the ’tilt a whirl’ pretty much most of the time. I’m sure when his chemo is finished he will regain much back again, staggeringly so- I believe.

    Hugs.

    Comment by buppyson — October 24, 2009 @ 8:22 am

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