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

June 19, 2009

We Don’t Need Roads

“Where we’re going, we don’t need roads.” — Dr. Emmett Brown, Back to the Future

Colin’s cancer has been affirmatively diagnosed as ependymoma with additional findings that will be revealed in a final report on Monday. While this is a relatively common type of cancer in children, its manifestation in Colin is unique. As we have mentioned before, the tumor is unusually large, and perhaps that is an understatement. Also, it has extended far beyond where tumors of this type in this location typically migrate.

The tumor tissue itself is composed of different components, some less aggressive and some of the most aggressive type. It is evidently impossible to identify which areas are of which type through either imaging or surgical examination.

While ependymoma is not especially responsive to chemo (it is not categorically unresponsive to chemo either), the hope is still to shrink the tumor prior to surgery. If one type of chemo therapy does not work after several courses, it is possible for us to switch to a different blend of drugs.

The risks to surgery in the areas where it has migrated, especially on the interior side of the cerebellum, are extreme. While a primarily surgical solution to ependymomas may be typical, it is probably not wise to assume the typical approach. In fact, there is nothing typical about Colin’s case.

The internet will unearth an unending stream of facts and statistics on medical issues such as cancer, and ependymomas and childhood cancer are no exception. We have suggested to the oncology and surgical team that we have ventured beyond the realm of useful statistics, so there is no value in a particular percentage of response to this or survival of that. We can only formulate a treatment plan and respond accordingly.

The doctors of all disciplines are sending the case out for additional opinions because they are looking for constructive input on how to approach Colin’s care. We are discussing securing additional second opinions, although it seems that some of the physicians/centers we have heard of are already on the short list to receive the case from the team here.

Assuming that we can shrink the tumor and resect it, there will probably be a course of conformal radiation. This type of radiation therapy does not entail the same risks as traditional radiation of the entire brain because it constricts the exposure to a smaller area. Traditional radiation in children under 3 can cause permanent cognitive deficits.

Because of the need to proceed cautiously, the team does not forsee beginning therapy until late next week at the earliest. When we get a final report and have a better understanding of factors, such as whether there are tumor cells in the CNS fluid, the doctors will decide whether to convert the drain that Colin has into a shunt. The shunt is fairly unobtrusive and constitutes a short and routine procedure.

In the short term, Colin’s recovery is going extremely well. He began shaking (on command) the egg shaker that music therapy brought in and we saw glimmers of a smile. It’s convenient that the neurosurgeons have a cute nurse practitioner. 😉

Colin has been experiencing sporadic vomiting and didn’t have much of an appetite today, though he ate some and nursed a few times. However, he ate very well for dinner, dogging a good deal of the spinach and mac and cheese that came on my plate (as a nursing mom, I get a tray sent up that has grownup food that is closer to what he is accustomed to and involves more vegetables).

If a strong constitution counts for anything, Colin is in good shape. He is a hearty boy who has dealt amazingly well with the indignities of medical treatment. We are interested in pursuing any alternative therapies that complement the traditional course that we will embark upon. I am especially interested in properly supporting Colin’s nutrition as his body works hard to cope with the effects of the treatment, the struggle to overcome the tumor, and the neurological rebuilding process. Every indication is that he is well equipped for the task, and I am certain that there are many people out there who are rooting for him.

This latest news on Colin’s tumor is not surprising, though it is difficult to hear it laid out as concretely as it has been. The reality is that Colin has a life-threatning illness, but it only underscores the importance of remembering that he is alive today. The outcome is not as important as the process.

Today, he is a wonderful little boy who touches those around him. Even laying in a hospital bed, that truth has not evaporated. The staff here enjoy him and many who have treated him stop in on subsequent shifts just to say hi or see how he is doing. He deserves to be appreciated for who he is at this moment, as difficult as that may seem. If you are with Colin, that doesn’t seem difficult at all.

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