Today, Colin enjoyed another family get-together. The highlight was probably a quad ride with Uncle Steve (it was the slowest and most careful that he has ever driven in his life!)… though the cake ranked pretty high.
He has to keep his distance from the kids especially and spent much of the day observing the activity around and noshing. We were on the fence about bringing him but felt that we could adequately control the situation and that he would get so much out of it. The whole family is feeling run down and he nursed more than usual during the day, which Mom was happy to oblige with.
However, Sunday will be spent more quietly at home. With the family hoopla over, we hope to entertain some visitors here. Monday, Mom will take Colin to New York for the pre-admission testing on Tuesday morning.
As much as we are enjoying the restorative time with him out of the hospital and the opportunity to give him (and the rest of the family) a more normal quality of life, we are anxious to get him in the operating room. Every day that passes increases our anxiety about further encroachment of the tumor and the possible damage to Colin’s nervous system.
Dr. Wisoff has only encountered the inside of Colin’s noggin through various scans and will meet Colin in the flesh for the first time as a head attached to an unconscious little body. It is a surreal fact but only serves to underscore the importance of our involvement in his care. Without our observations, the medical team will have no barometer against which to measure Colin’s progress and relative functionality.
We are preparing ourselves for the possibility that Colin will emerge from surgery with serious complications that will create a host of issues. In reality, it is statistically more likely that he will not suffer one of these serious complications. Nevertheless, we don’t have 70% of a boy to worry about but 100% of whatever circumstances arise for Colin. There is always a small but present risk of a brain stem stroke.
Thus, we are experiencing some underlying anxiety about the specific results of the surgery beyond the degree of resection. We have begun inquiries into various in-patient rehab facilities, realizing that even so, he may come home still coping with serious medical complications.
If nothing else, this serves as a reminder that we cannot anticipate the future or plan for a certain sequence of events. We must continue to adapt to a continually fluid situation. This is what they invented yoga for, isn’t it?