It is a little surreal to know that one year ago today, we were preparing for Case to receive his first dose in the clinical trial. We had no certainty or comfort as to what the next year would hold.
In fact, I had a 30-second rule.
Although I knew there had already been some good results from the trial in at least one boy, I would only let myself imagine the possibility of improvement, of stabilization, of giving Case a longer and better life … for 30 seconds at a time. To think about it longer would be to get too attached to the idea so as to risk huge disappointment. But, to not think about it at all would lose the hope that brought us to leap at the trial in the first place.
Those 30 second hopes and dreams have now become our day-to-day reality.
Today Case had his 14th dose of IT Idursulfase. We are on the heels of a high white count and a possible broken port. Today we learned that his white count reduced a bit, but it is still elevated.
But, I’ll only think about the risks, the potential for more surgeries, and the bad outcomes … for 30 seconds.