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

June 30, 2009

Still Planning

Tuesday morning, we had scheduled a meeting with the two neurosurgeons and oncologist, but due to logistical snafus, it never took place. We saw Dr. Mohan for the first time in a week and chatted for a bit about Colin’s progress, and Dr. Tobias gave us a copy of an article on surgery for a different variant of ependymoma surgery. The latter was quite sobering and made real many of the potential complications associated with this kind of surgery; we face even greater risk in reaching the entirety of Colin’s tumor.

Sunday night, the nurses had to awaken Colin every two hours, creating a poor night of sleep for both him and Dad. Fortunately, this protocol was adjusted the following evening. Much of Monday, Colin seemed glum and irritable. We attribute this to the combination of interrupted sleep and the mood changes we have been observing.

Evidently, he suffers at least to some extent from Posterior Fossa Syndrome, which Dr. Mohan believes is endemic to pretty much any surgery in that region of the brain. Many patients are mute until this suddenly clears and demonstrate moodiness. It also seems that some of these mood-related issues can be permanent, although he also said that this is generally speaking a poorly understood phenomenon.

However, it is also clear that Colin wants to go home and is anxious for any opportunity to skip out of the joint. We spend a lot of time taking him outside and venturing to more exciting areas. We have had a lot of luck taking him to the infant/toddler room, which is fully stocked with preschool amusements.

This has been a great opportunity for us to start doing rehab with him. We spent a few minutes with the physical therapist while he had still been in PICU learning about basic exercises. However, he has become so much stronger that he is almost standing on his own (impressive given the weight gain!) and is able to walk with support for stability and to reduce some of the load.

Even in two days out of PICU, he has advanced noticeably each day. On the first day, Colin was very unstable sitting in a little chair, but the next day was sitting unassisted (with spotters, of course). He is also sitting unassisted on the padded area of the floor, though he starts to list to the right as he tires. He also sits a bit in bed, but the hospital bed is ill suited for it, since it is not uniformly solid.

Colin also took his first shower since entering the hospital. He spent much of the time seated and some of it standing (again, with support). Though he complained the whole time, there were moments when he obviously enjoyed the sensation of actual running water against his body.

All of the activity tuckered Colin out, so he napped well during the day. His entire sleep pattern has gone out the window. It is too easy to forget how much his little body and mind have gone through over the past several weeks. Formerly a very active little boy, even though he spends so much time lying in bed, he is enduring a lot, probably more than we appreciate.

Over the past several days, it appears that Colin has put the steroid-fueled consumption to good use and grown. He looks taller and his chest is thicker. Most people who meet him are shocked that he just turned two. this may ultimately serve to his benefit, as it may make him better able to tolerate surgery. We understand that surgery on a child is limited by total blood volume, which depends on size. If this is in fact a strong factor, then his gross size is a good thing. We also plan on looking into the possibility of banking blood specifically for his use, should the availability of fresh blood provide any advantage for surgery or recovery.

Looking at Colin’s still-growing body, it is counterintuitive that he could continue to grow under these conditions. However, this is a basic fact of his being a child; even as the tumor threatens his life and health, his body attempts to continue on its natural arc to adulthood. This feels like an important lesson in managing decisions and attitudes. For one thing, he remains a child who deserves to have his childhood protected, even in the face of the treatments he must undergo.

Perhaps this also hints at the reason that childhood cancer is different from adult cancer. Children’s bodies are regenerating and extending themselves, so the healing process can interleave itself with natural growth. That Colin seems to have gone through a growth spurt following a major surgery strikes us as a good sign, another indication of his robustness.

Today was Sibling Day for big brother Aidan. The oncology program here sponsored an event to support siblings that are taking the journey through cancer treatment with their families. At first reluctant to participate, he shooed Dad away during one of the activities (“can’t you go upstairs?”). It’s healthy for Aidan to also realize that he is not alone and that there are other healthy kids out there who have to spend lots of the time in the hospital, an environment rife with boredom and tension.

Aidan received a backpack with various gifts, including sheets of paper that alternately say “My Family Before Cancer” and “My Family After Cancer.” Seeking this sort of art therapy material is heart wrenching because it makes concrete the impact that this change is having on the second innocent victim to Colin’s ependymoma. However, it is also a relief because it represents an outlet for him to express himself.

There was also a sand art activity that related different colors of sand to different emotions. He picked blue (happy) and black (funny). I don’t know about the details of the project except that he chose to use much more black than blue and there are other colors that are not reflected on the legend that is tied around the neck of the bottle. I don’t know if this is because there was no room to describe these additional feelings or this was purely artistic license on Aidan’s part. I do know that, on another piece of paper which prompts children to draw their own feelings on a blank face and denote the dominant emotion, he chose “happy.”

It was a genuinely happy day for him at the hospital, where he was able to befriend another boy whose brother has leukemia. They are not terribly close in age but obviously share another kind of bond (not just a love for video games). Now, Aidan is able to experience some of what we do in bonding with the other parents of sick children here.

Aidan is no dummy and clearly understands that there are some gravely ill children here. Moving out of PICU has been positive in that regard, moving us a step away from the tenuous atmosphere there. On Saturday, the whole family was on the way downstairs for a quick MRI when we encountered the STAT team, which provides medical transport services within the hospital (for instance, for patients from the ICU getting tests or going into surgery) or between hospitals.

In this case, they were bringing in a patient from another hospital, a baby on a stretcher who was as white as a sheet. We pulled over to allow them to get past quickly, which was important; one of the STAT team members told our nurse, “this baby needs to be intubated.” As adults, we shuddered just knowing the anxiety that the baby’s parents must be going through. Aidan averted his eyes and did not even look at the stretcher.

This sort of scene is inevitable, especially in the vicinity of PICU, which cares for patients whose conditions are inherently unstable. It’s not clear to us whether Aidan realizes that the little girl in the room next to ours died during our stay. She was a tiny thing who always seemed quiet and immobile, a stuffed animal propped near her head. During the week, her mother would spend her days sitting by the bed, as the days wore on spending more time just weeping or hovering around the kitchen area looking sad. It was not possible to co-habitate near her and not simply give her a hug.

Especially with the little girl’s death imminent over the weekend, family and friends gathered in PICU. It just so happened this was also the first weekend that Aidan came in and we had a few other family visitors. Aidan was not in the hospital when the girl died but did witness the flood of visitors that preceded and followed her passing. It is impossible to say how this may have affected him or his perception of Colin’s illness, but he has surely surmised that (at least some) people who stay in the hospital are really sick and die. Aidan certainly harbors no fantasy that doctors are able to cure everybody, and presumably that impotence extends to Colin.

As positive as we are and remain about Colin’s prospects and his ability to beat the odds, we cannot escape reality. Today, now that the hydrocephaly is no longer an immediate threat, Colin is no imminent danger. Thus, it is easy to tell Aidan that Colin will come home (presumably we will make this happen) and we will all be together as a family.

However, beyond that lies a broad uncertainty. This is hard enough for adults to manage, though it is not necessarily different from the basic uncertainty of life that every person lives with. Generally speaking, however, we do not have to face it as baldly as we do in these instances. Aidan now says that he doesn’t want Colin to come home until he is all better, and it is possible that he is expressing his anxiety at the long-term management of this uncertainty.

Probably we will be enlightened when we see how Aidan draws his family before and after cancer. Today, he drew a picture of Colin smiling saying, “Hi, my name is Colin.” On Sunday, he left his brother a get well note. Colin is most certaintly lucky to have such a sweet and kind brother.

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