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

July 5, 2009

Making Pinocchio a Real Boy

Colin has really enjoyed becoming a boy again, rather than a patient or freak. Although he enjoyed the quasi-liberation of the cart at the hospital, it was a poor replacement for a return to human society.

Even though Colin has big physical limitations compared to his pre-admission condition, he is now able to sit independently (without support) on the floor or in a chair easily. We still spot him, especially as he is not stable when tired. He continues to walk for physical therapy, though reluctantly. We generally try to entice him with a special toy or food.

This is a delicate balance to strike, as we now recognize the need to help him slim down and control his food intake but can also leverage food when we need to coerce him to get the exercise that will reduce the gut a bit. Even in the week or so that we hope to have him home, this will probably make a difference.

At home, we have greater control about the available food options. Here, we can offer steamed vegetables which he really enjoys (especially a household staple, broccoli, cooked properly rather than destroyed in the hospital kitchen). Also, we can add lean meat.

He still prefers Pediasure to any other beverage choice, but we use it primarily to give him his medications and then dilute it by adding a lot of ice. It is both an onus and a relief to be able to control these various things. While there is nobody else to enforce the administration of medications (especially unpleasant ones), we have established good methods to do it that work within his growing reluctance to cooperate.

No more thrice daily needle sticks for blood glucose checks! No more constant stream of strangers performing various indignities at all hours of the night.

On Saturday, we stayed at the homestead. Grandpa visited and spent some nice time with the boys. Otherwise, things were rather quiet. Colin was still fairly withdrawn during the day, though he started opening up more. He remains apprehensive about engaging in activities where he cannot adequately control his body, like bubble baths. Even with a relatively small amount of water, it isn’t very much fun, though Mom does enjoy getting the smell of the hospital off of his skin and hair.

For us, his unsteadiness is more like a reversion to an earlier phase of development that we are familiar with. However, for Colin this is drastically disorienting and difficult to cope with. It gets easier over time and, simultaneously, his body and coordination improve.

On Sunday, we spent the morning at home and casually entertained a visitor (sorry about the pajamas, Catherine!). For the afternoon, we went to Aunt Kirstie and Uncle Tom’s house for a swim and early dinner. It was great to get out of the house and Colin enjoyed the idea of taking a normal trip. Also, this mirrors the trip he missed on the day of his initial diagnosis when he had to skip his family birthday party at their house.

We wanted to get him in the water, which he was extremely reluctant to do. Even so, we got him suited up and in the water, complaining until Uncle Mark got in the water. When Uncle Mark got him to laugh, he enjoyed himself more but still wanted to leave shortly thereafter.

In any event, it was an important milestone where Colin had to trust us in engaging in an activity he had little control over. The hospital experience has challenged his attitude toward us but we know this is only the beginning. With an even more challenging recovery period ahead, we need to be able to communicate with him and have him trust that we will take him home when he is well enough and that the hospital is not going to become his new reality.

There has been no greater demonstration of our commitment to his quality of life than our efforts to bring Colin home. This is the best way we could possibly give Colin the boost in spirits that he will need to endure the coming procedure and recovery. It has also provided us the opportunity to reflect on the holistic treatment of Colin’s cancer.

While we continue to trust the neurosurgeons, we really need to have certain questions answered about the hospital’s ability to provide continued care. The lack of coordination and complete absence of a case manager are distressing. This puts us as his parents in the position of assuming this role without the benefit of even understanding what services are available, what he requires, or how to go about arranging it. This is not unsurmountable but it is unnecessary in our opinion.

It is likely that at some point in Colin’s care we would have to reach beyond the resources at the current hospital. The question is whether we are also locking ourselves in to treatment there by starting this very major surgery at that facility. If he does require a procedure elsewhere while he is still hospitalized, how will that work with insurance or even in a pragmatic sense?

What if our neurosurgery team is in one location and the radiation services are elsewhere yet both need to be done in a short period of time? We know that our oncologist is retiring imminently, and we have not yet been introduced to the person who will be taking his place. Although chemo does not play a pivotal role in the front line treatment of ependymoma, there are deeper considerations if the first rounds of chemo are not sufficiently effective.

Although the dilemma isn’t necessarily different today than it was several days ago, our clarity in understanding the pivotal issues has grown as it never could have within the confines of the hospital. We are grateful for the hospital and obviously see the need for it in treating major illness. However, it is easiest to cope with during crisis. The better the patient gets and the less dependent on critical care, the more awareness of the environment starts to affect the psyche. Even as Colin’s parents, we found our own perception of reality shifting to realign with the idea that clinical necessity and bureaucracy are two immovable tent stakes pushed into the ground.

Tomorrow’s office visit with Dr. Mohan should be fairly perfunctory. Although we were supposed to have daily nurse visits, we have fared well on our own over the weekend. The fast breathing continues but he has demonstrated other gains, including high-fives with his right hand (the weak side) this morning.

Perhaps the best news we will be able to report is that Colin really enjoyed being a little boy. Today, he spent a lot of time playing with cars, delighting in Rex (Boston Terrier, not a person) chasing a disgusting rubber ball (some latex exam gloves would be in line), and socializing. When he went to bed tonight, he pointed to his crib and smiled as he settled in. A real smile, content and relieved. 🙂

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