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

September 15, 2009

Our Colin of the Contradictions

On Sunday night, Colin spiked a fever and the team immediately started him on antibiotics that they were poised to deliver. His morning bloodwork showed that his Absolute Neutrophil Count (ANC) had dropped to zero, an abrupt change from several days before, when it had been at 3,400.

Also, Colin’s hemoglobin level (7.6) showed that he was anemic, so they ordered up a blood transfusion. This was really no surprise and had been anticipated over the weekend. Medically, Colin really slid downhill and will have to remain inpatient until his counts improve and they are confident that he can go home safely.

With all this going on, we expected Colin to be quite groggy and weak. However, in the morning, he was interacting and moving around a lot more than we had seen. He was independently moving all of his limbs and exploring the use of his hands.

Colin even raised his arms up so he could be lifted out of bed after his bath! He sat up well and did some PT sitting on the edge of the bed, mostly movements designed to improve his core strength and get his body accustomed to moving from side to side.

In the afternoon, Colin’s fever spiked again and he slept for some time, but when he eventually woke up, he was interested in sitting up. He played in bed, working with a wooden puzzle, playing with cars, and moving himself from a reclined position to a sitting one. He still curls quite a bit when seated and is at great risk for tipping, but he is moving his head well and seems to have more control than we expected.

Colin had no interest in slowing down and basically played until he passed out. The nurse was surprised that he slept so soundly, but he was tuckered out from all of the activity! We are seeing steady and significant signs of neurological improvement. The greatest surprise is the timing, since he received his vincristine on Saturday and we have seen tremendous improvement since then.

On Saturday, Colin had stuck out his tongue for the first time since his last neurosurgery! In the days since, he has continued to stick out his tongue and move it around in his mouth. This activity is difficult for him but some of the best therapy he could have.

With enough physical gains in the next couple of weeks, we could hope for him to weather the next round of chemo even better. It is amazing to us to see children with brain tumors who are here for treatment and running around like nothing is wrong.

Not only is this a reminder of how grave Colin’s tumor is/was, but it makes us thankful that he is in decent enough condition to get treatment at all. We see children come in and out of the hospital in a day or two, yet Colin is one of relatively few who have remained inpatient for any length of time.

Even with low ANCs, other children are able to go home and are encouraged to act “normal,” if germphobic. As in New York, Colin is treated as an especially mysterious medical puzzle. Although is vital signs have stabilized significantly since New York, he still has his moments! Also, his track record of previous infection makes him more vulnerable for repeats. The doctors treat Colin with fragile reverence, though of course they plan on sending us home with him as soon as possible.

So, having a horrible day from an immune standpoint at the same time as showing tremendous physical improvement is simply Colin being Colin. He is simultaneously delicate and tough. He captures the nurses with deep, soulful gazes, then charms them with a silly grin. Increased motility in Colin’s facial muscles gives him greater range of expression, and he always keeps a good eye roll in stock.

A volunteer who sat with him on Sunday night stayed in the room much longer than she had planned simply because he didn’t want to let go of her hand and cried when she tried to leave. It was sweet and heartbreaking and she was dewey eyed by the time she left.

With greater physical vim, Colin is able to better express impatience and frustration. He now will jiggle one leg out of boredom and his strong left arm is too effective at batting away a sterile-gloved hand armed with a suction catheter.

Colin’s newfound spunk is a welcome change and hopefully a harbinger of more improvement to come. It is heartening that chemo hasn’t completely curtailed his various therapies and that the ability to fight infection does not evidently correlate with neurological improvement. Go, Colin, go!

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