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

September 28, 2009

Iron Man, not Iron Lungs

Colin has finished the methotrexate infusion that kicked off the second round of chemo. Despite a very rough time the day before the chemo started, he has continued to improve neurologically. Arguably, he has made more progress in these days than we have seen so far.

Colin is getting more playful and aggressive with his brother, alternately petting his hair and face and grabbing it. The former is welcome and the latter generates panicked shrieks. Colin’s grip is tight and it is near impossible to peel those fingers from his meaty little hand. Colin’s improvement is good for Aidan, hair loss notwithstanding, and we appreciate the sacrifices he has made for his brother’s care.

Physically, he gets stronger and more coordinated. On Saturday, he tried to wiggle to stand on the floor, even though he has not yet mastered standing again! His left leg can bear the full weight of his body and the right is tentative. In addition, he is trying to take actual steps forward, so the basic coordination of stepping is still there.

Colin’s prime motivation was getting to his wheelchair. When sitting fully upright in the chair (it tilts back), he can sit right at the table of the closer of the two inpatient playrooms. In the other playroom, which has a plastic train set, he has to sit in a chair being spotted by somebody, though he hasn’t tipped over yet.

Colin is anxious to play, and he is very happy about being able to get out of his room. We keep some hospital toys in the room for him, but it is also nice to get out. Infection control on the toys that are left out on the weekends is poor at best, since there is no staff available to clean them and people generally do not put toys in the used bin. There are no cleaning supplies left out for parents to use (since they are considered a hazard to the children) but we can ask for sterilizing wipes at the nurses’ stations.

Since Colin is not neutropenic, we aren’t on incredibly high alert, but he certainly has demonstrated a predeliction for contracting infections.

We met one adorable and very quiet little boy at the play area who was accompanied by a volunteer. He has on a mask, as did his companion, who did so to get him to comply (he obviously was not in isolation). I was concerned that he was moving the mask to touch his face and rushed over with hand sanitizer to clean his hands, knowing the state of the toys sitting on the table.

The volunteer seemed a bit surprised and we discussed the issue that the toys are not regularly cleaned on the weekends, when the children have the greatest amount of free time (no clinic appointments) and are most likely to have sibling visitors who are also ripe vectors for infection. She mentioned that I was more worried about the neutropenic child’s infection control than his own mother, who evidently is young and probably underwater dealing with his disease.

Later, the volunteer reported that she spoke to the volunteer supervisor, who explained why the wipes are not left out but asked the the volunteers clean down the toys over the weekend whenever possible and use wipes to clean them before and after any children they are watching play. There is a certain satisfaction to seeing a concern round the bend and a resolution or at least an approximation at improving the situation arise.

This is generally our experience here, and we are often encouraged to voice our complaints or comments, including everything from the trivial (add Noggin to the cable channels!) to the weighty (H1N1 vaccination). On that point, we wrote a letter to the medical director, who, via our fellow, asked somebody to contact us. They seemed a bit surprised about it, as we never informed our team about the H1N1 inquiries.

Smoking is a huge issue here, as St. Jude is the only hospital in Memphis to allow smoking on premises. There is a smoking shack frequented by staff and parents (often accompanied by the children) on one side of the campus. Elsewhere, smoking is strictly prohibited.

On Friday, following Colin’s drama, we were outside waiting for the shuttle to take us back to Target House (prior to our 8 pm admission for chemo; inpatient admission appears to be timed to follow the 7 pm shift change). Colin desperately wanted a wagon ride and we realized he was able to sit up and hold his head up well enough for it, so we packed both boys in the wagon and sailed off.

During our perambulation, I noticed a woman walking away from the main entrance of Chili’s Care Center (Chili’s as in the restaurant, which is a strong supporter of St. Jude) with the suspicious posture of a smoker, one hand wielding a burning object. I glared, expecting her to move on, then glared again.

The glaring likely went unnoticed because many people around here assume glaring as a neutral expression. Yards away, she sank down onto a bench with a prominent brass sign with the words “No Smoking” engraved in elegant script.

Given the stress of the day and accumulated frustration about the medical delicacy of my child, combined with the fact that we were out of doors and there was a bit of distance between us, I simply began screaming some combination of berating, instruction, and questioning: No smoking! Can’t you read the sign? You can’t smoke here! There is a smoking area over there! My child has a trach and cannot be exposed to smoke at all! Could I possibly be more clear?

In between all of this, there was some exchange that consisted of her explaining that she was going to go around this corner (this was not a sufficient response) and that she was aware of the designated smoking area but she was too OUT OF BREATH to reach it. She slunk off, presumably not to smoke around the corner since, even dragging a wagon with two children, I clearly was more fleet than she. Our ride had arrived, the shuttle manned by our good friend and transportation benefactor Jerry, and we had other fish to fry.

There is some catharsis in this sort of interaction but the pervading frustration that people cannot abide by the rules. We encounter many many smokers here, so deliver no judgement regarding an adult’s decision to engage in self-destructive behavior, as long as it remains just that. Furthermore, people are here under an acknowledged amount of stress and many have no healthier outlet for their anxieties.

However, the patients at St. Jude, with or without a trach, represent an especially vulnerable population. They are too often subjected to second hand smoke by their own parents, but it is within my control to prevent it to mine.

On an evening jog, there is usually a zone of toxic output, as the one-mile marked route happens to pass inches in front of the smoke shack (oh, the irony!). On Saturday night, the smoke shack was clear, but there were two people standing on the sidewalk, partaking, one of them the heavily pregnant mother of a five-year-old girl with neuroblastoma. We have spoken with the family before, particularly the father, about the daughter’s disease and their interest in other treatment options.

Every parent wishes he or she could do something or could have done something in the past that would change the situation. How could I possibly improve my child’s health? This leans into the realm of judgement, but so be it. Especially in light of the seriousness of their oldest child’s dire cancer, it is inconceivable that the mother would not find some way to allay her habit, if only for the duration of gestation.

It puts into a different light the father’s warning that St. Jude threatens to legally remove parental rights if you do choose to take your child out of treatment. It is hard to imagine that the institution would do so if the family were discussing a trial up at Memorial Sloan Kettering, for example.

At the end of my jog, I again detected an infractor of the smoking rules, this time much further from the designated spot, standing next to a parked pickup. I mentally paused but continued on, then stopped and turned around. Ignoring a problem is as bad as breaking the rule, and it promotes an environment where one excuse piles onto another and there is a culture of non-compliance.

This time, no yelling was required, and she yes-ma’am’ed me when I excused myself for interrupting her phone conversation and told her I needed to speak with her. She closed the phone and I politely informed her that she was violating the rules. There was some smoke shack malfunction, she explained, and she knew she was violating the rules but came out late at night for that very reason. You can smoke outside the property, not far from the parking lot. I didn’t know that. Seriously, you didn’t know you could go to the other side of the gate?

Well, there are a lot of children who can’t be exposed to smoke, and we need to make the campus safe for all of them. If I were being discharged right now (we have been discharged at that time of night before), I could possibly be taking my child through this very lot. If my child were out here, I wouldn’t be smoking in front of him, she replied.

Maybe the interaction was pointless, but she seemed cowed enough by the authority of my age (if only it weren’t so) relative to hers that I’m hoping it worked. When I went inside, I reported the problem to security, couched as “if the smoke shack is inaccessible, people need to be informed accurately about the rules.” I ended up being put on the phone with a supervisor, who was befuddled and outraged, as the smoking areas (apparently there are two) are not closed off. Security is stepping up its efforts to patrol the lots. Happily, there was a concrete response that was much more satisfactory and thorough than one person on a mission. To that point, I have been rightly instructed (ahem!) to stop confronting other parents for fear of engendering ill will toward our family and instead set security into action.

Coincidentally, the excuse generating woman from the lot was in the play room today with her son, the doe-eyed boy who had been playing with a volunteer on Saturday.

There is an apparent moral of the story that a lot of the parents here are scary, and certainly some of them are. Most of them are thoroughly out of their element and struggle with this new situation. Certainly not all parents are so intimidated that they have difficulty functioning, but we see more evidence of that here than we have at other institutions, possibly because St. Jude takes patients irrespective of insurance or ability to pay.

It is a wonderful thing because ignorance endangers these sick children, but St. Jude does its best to save them, no matter what the family circumstance. In our case, we are working hard to make sure that the system is able to appropriately support Colin’s care and forcing adjustments, if necessary. For many families, it is the system itself that provides the greatest safety.

No Comments »

No comments yet.

RSS feed for comments on this post. TrackBack URL

Leave a comment

*

Powered by WordPress