Colin is still sleepy but alert enough that he is now breathing on his own. We are delighted that he is sensitive to tickling on his feet and moving all his chubby little parts.
We had our preliminary meeting with the oncologist, who will be checking for his test results on a daily basis. He asserted that children handle chemo extremely well and that they are able to counteract many of the unpleasant side effects with medication.
It seems likely that they would like to start the chemo pretty much as soon as the port is installed. Obviously, the treatment plan will depend on the type of tumor. However, they are helping us set our expectations.
Colin has been amazingly resilient and adaptable throughout this process. For a very active child, it is surprising that he has not complained about his inability to move around (prior to surgery) or about being tethered to monitors and IVs constantly.
Given the fact that the tumor is likely congenital, we realize that Colin has been managing the discomfort and pain from this tumor for a long time. His gentle disposition has masked the behavioral effects, but we sense that he is very amenable to the treatment because he is highly motivated to make the pain go away. He is a better patient than most adults and has expressed his desire to have the doctors help him.
Prior to surgery, we showed Colin where the drain and surgery would take place, and he later pointed to both spots (unprompted) and talked about the doctors. The surgery, chemo and long-term effects from the tumor/pressure all bring potential negative changes to his neurologic function. However, the relief of his symptoms and the new-found freedom for his brain to grow may also bring positive ones.
We are seeing Colin’s good nature truly showing through and look forward to the new tumorless (for the time being, less tumorful) version of him that will be leaving the hospital and continuing to grow.
I know that at first blush, the discovery of Colin’s tumor is the worst kind of news for a parent. However, in these days spent with him after that fateful CT scan, I have come to more greatly appreciate the need to live in the present that children are especially adept at. Colin has been happy and playful and to all appearances healthy. No matter what the outcome, after finding this out, we get to enjoy Colin’s presence today and for many days.
We are also lucky as a family that Colin has a wonderful big brother whose world has been transformed. Even though he may not be quick to articulate his anxiety over his brother’s illness, he is obviously concerned and is internalizing his worries. We greatly appreciate all the support that Aidan has received and the many offers for play dates. He is lucky to have so many caring friends and family.
Thanks again for the support that has meant to much to us. We know that we face long days ahead. That path, no matter where it leads us, is illuminated by the kind support of all the fans of ColinLovesTractors. On that note, there will be pictures of Colin on tractors posted soon. Seriously, he does love tractors and we have the pictures to prove it.