Getting Up There is nothing extraordinary or superhuman about what Jeff and I are doing. People say things to us all the time like, “I don’t know how you are doing this.” Here is the enlightened answer: We have no choice. We are doing what any other parent in our same situation would do. The only thing we can choose is to get up each day. We get up (assuming we have actually been to bed). And we care for Ben to the best of our abilities. We met with Dr. Park on Tuesday and she was able to offer us some hope. There have been a small number of kids in Ben’s same situation who have responded well to this experimental therapy. They are not promising us a cure, but there is a chance. Most families in our situation must travel to New York to receive this protocol. We are fortunate that Ben will be able to get it here - with our doctors, with our nurses, with our family around us. He will endure six months of treatment starting on the 12th. It will once again push him beyond what should ever be asked of someone so small. The main side effect will be extreme pain. Followed by nausea, vomiting, fevers, rash, hives low blood pressure and more. It will not be easy.
But we will get up. Because in the end, that is all we can do.
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