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

August 29, 2009

Third Eye Patch

Today, it seemed that the eye patch gods had finally smiled upon us: the arrival of a nice bundle of pediatric eye gauzes. Also, incongruously (so it seemed), a bag for capturing urine. Well, all of it related to the same thing: urinalysis before and during the methotrexate infusion that started on Saturday at around 2 pm.

The urine bag went on in the morning and the eye gauzes are part of the diapering process. Colin has been receiving a boatload of fluids since last night (78 ml/hour, and his feed is still set at 50 ml/hour for 20 hours with four hours of rest). This is all to help his body cope with the chemo and reduce the toxicity to his organs, and it certainly proves that his kidneys are A-OK.

Thus, there is no shortage of testable materials. The eye gauze captures urine so it can be tested for pH, and it inspired a “third eye patch” joke that made the nurse pause and exclaim (amused rather than offended), “Oh, stop!”

Even in the midst of administering toxic chemicals to a toddler, there is opportunity for bawdy humor. Seriously, there is a balance to strike between maintaining awareness of likely side effects and creating unnecessary anxiety in Colin and Aidan with overt anticipation of problems.

We were able to joke around and play surgical glove volleyball. Colin put a big purple whale sticker on a seascape picture. As the methotrexate set in, he looked more green around the gills and strongly resisted suctioning. Although he has been on Zofran steadily for several days, the doctors also have orders written for Benadryl and Ativan. The first thing that we tried is adding Bendaryl in a schedule four hours askew from the Zofran, so he is getting some kind of medication intended to help with nausea every four hours, even though each is only administered every eight.

Fortunately, Colin is beginning to adjust to the trach. He needs periodic suctioning but most of the secretions remain in his mouth. Trach suctioning is more involved and distressing, since Colin the suctioning throws off Colin’s breathing entirely. The more he coughs, the better; he is gradually learning how to do this.

Overall, Colin is doing tremendously well, given the stream of complications that have plagued him and recovery from a series of procedures. We are anxious to get him back in the swing of things with rehab. He has been off of the calendar for PT because of the trach and concerns about starting up bleeding.

However, between the trach stoma (hole) healing properly and days without chemo (until next Saturday), we expect that he will be getting more active for the rest of the week. The methotrexate is not especially myelosuppressive, so we don’t anticipate any particular immune problems beyond what he has already experienced. So, that means we need to be careful though not paranoid.

There has been some talk of the possibility of bringing him home before the second week of chemo begins. This is a fairly daunting possibility because of the magnitude of his medical needs right now. The trach is more demanding than the G-tube, mainly because it requires sterile procedures (this is generally not true of trachs but St. Jude patients are treated this way because of weakened immune systems) for cleaning or trach replacement. Also, much of this care demands a second pair of hands.

The doctors here have already reduced or eliminated many of the drugs Colin had been taking to control blood pressure and edema. The hydrocortisone wean has continued, though he did get a stress dose because of the trach surgery. The focus here is on reducing the number of times he receives the medication, then reducing the dose.

If Colin is still on hydrocortisone when we take him home, a twice-daily schedule is much easier to manage and more likely to be carried out accurately. Going home doesn’t mean that he would be “hanging out” all day. In fact, he would still spend his days here at St. Jude at various medical or rehab clinics.

There is a strong neurocognitive component to the study he is partaking in, and it emphasizes early intervention. This coincides neatly with the Head Start protocol, which was originally intended to delay radiation (today, many children are able to avoid it entirely, depending on the diagnosis; Colin is not one of them and conventional wisdom still dictates the use of radiation).

Another big development is that Aidan begins school on Monday! We had the opportunity to visit the classroom in the afternoon, when Aidan’s cohort of children between 5-6 remain in class. He was extremely anxious about the curiosity of the other children and was uncomfortable with the stares and frequent glances.

He elected to explore the room on his own rather than sit in circle with the children, starting in on the Grand Array. However, he got stuck because he didn’t know where all of the relevant materials were and Mom was no help. Even so, it was good for him to focus on something normal and familiar to him.

The classroom is charming and nicely designed. The space is large and open and the children spend much of the day outside, either working on gardening or landscaping projects or simply engaging in outdoor activities like painting. There is a shielded area that is outside of the class where they can stay out even in milder inclement weather.

Also, the school has a resident pet, a geriatric black cat named Monty who adopted the school with a now-deceased brother many years ago. There is also a parakeet inside in a cage that is cute but less charming. Outside, we noticed a rabbit hutch with no current denizen in evidence.

The environment is positive, warm and homey. We are gratified that Aidan will have something completely unrelated to cancer to engage him (though one of his classmates is a brain cancer survivor who just got clean scans days ago).

The school is close to St. Jude, though past the hospital from Target House. It is located on a small island community that is relatively new and charming.

The directress suggested that Aidan might start with a half day for the first week, but knowing his independence and desire for normalcy, we felt it would be best for him to jump right in. Besides, an early dismissal would also mean more time at the hospital, which at best means lots of video game time and at worst underscores the fact that his brother gets more attention than he does.

St. Jude is keenly focused on the patients and, while supportive of the entire family, limits the appeal and practicality of having siblings around. Although this is inconvenient for us, healthy children with broad social exposure represent an infection risk to a population of kids who don’t need additional sticky, germ-infested fingers on every surface.

Instead, the St. Jude-provided housing is the venue for siblings to participate in activities and socialize with each other and patients who are well enough to be living outside of the hospital. Overall, this makes a lot of sense. The idea is to keep as much of family life centered around the family unit living in relative normalcy. As much as the hospital is a necessity for cancer treatment, it is not the best place for families to come together.

Again in the ICU, we saw evidence of another child fading from life. The ICU here is not especially intense, since it does not handle trauma or really much of any diversity, yet patients are at different stages of their illness. It is difficult to bounce in and out of the unit with a child who is only temporarily there for routine reasons knowing that there is a family (it is easy enough to guess who they are by looking) that is facing a much tougher juncture.

The focus at St. Jude is on hope, and we see this everywhere. Cancer is around us, yet it is becomes part of the flow of life. Some patients who circulate in public areas are active and normal, with the exception of alopecia and a face mask; others are obviously disabled by their disease, whether permanently or temporarily; others show no sign of ever having had cancer, and one plays a guessing game of figuring out whether a particular child is a sibling or patient.

Even so, there are ample reminders that not all of the children treated here will be on the right side of the statistics, even if those statistics are quite favorable. One thing we have surmised is that prognosis is an incredibly individual and fundamentally inscrutible calculation. There may be general statistics for a given cancer that may more or less accurately reflect the current state of science. There are always sub-categories or conditions that alter that. On top of that is the course of the disease and treatment which may be more or less ideal (this meant without malice to medical practitioners; the ideal course may be unknown until it is too late to make appropriate adjustments).

From the beginning, we asked to not be given a prognosis. Although this has served us well, it hasn’t been clear to us until now many of the reasons why it is true. (There may be others that we don’t know and will never be aware of.)

We came here to St. Jude because we felt this trial and the treatment here would give Colin a better prognosis. The same is true of other children here, and it represents the kernel of hope for families, regardless what statistical chances they were presented with by their local oncologists.

As we start to poison our son — and hopefully the tumor that threatens to resprout within him — we must let the hope overcome the fear. As with all scientific experiements, we will not know if this course of treatment is any better than its predecessors until it is too late to change Colin’s history of treatment. More basically, we will never know the exact correct sequence of events that would lead to a complete eradication of the cancer and whether such a thing exists at all.

Colin’s treatment has been at the mercy of complications unrelated to his underlying illness. What flap of a butterfly’s wings could have altered those events? A medical student laundering a jacket one day earlier or a resident donning a gown during an innocent (no patient care!) bedside chat? A broader swipe of a chloro-prep swab or a few extra seconds to allow microbes to explode before accessing his port? None of the above? The risk factors that may have led up to any of Colin’s complications can be speculated but never known.

We face the ultimate Schrodinger’s cat experiment. This is a thought experiment in which a cat is placed in a sealed box and either lives or dies based on a random event; under one interpretation, the cat (in a quantum sense) is simultaneously alive and dead until the moment that its status is known. Of course, in reality the cat was only ever absolutely alive or dead.

Riddle me this.

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