Within a few hours of receiving the news that my first Nexviazyme infusion – originally scheduled for this coming Monday, 18 October – was being delayed two weeks – to 1 November – the outstanding required paperwork and authorizations had been received by my Infusion Center.

Because my Infusion Center has a deadline by which they must order my medication and because the outstanding paperwork and authorizations were not in hand by that deadline, the Center made the decision to order and administer Lumizyme for this Monday. That said, it now appears that the final pieces are in place to proceed with Nexviazyme on 1 November.

As much as I was looking forward to this milestone first Nexviazyme infusion on Monday, I’ve been through this process of medical authorizations enough times to know that until every single item is in place, things can still go sideways. Such was the case here. We almost met the deadline … but not quite.

I’ll admit that I was deeply disappointed and frustrated when I received this news from Sanofi-Genzyme yesterday. I phoned my Infusion Center to confirm this decision and to adjust my scheduled arrival time for Monday and was reminded (again) just how professional, compassionate, caring, and friendly is the team that works there. I’ve been infusing at this Center for just over five years and have developed warm and wonderful relationships with the infusion nurses, hospital administrators, pharmacy staff, and all of the center support staff. I know they have done all they can to get these new infusions moving. After my conversation with them yesterday, I set aside my disappointment. I’m in good hands and everything is in motion. I’m focused forward on November 1st.

“… it is far better to light the candle than to curse the darkness.” ~ William L. Watkinson (later attributed to Confucius and Eleanor Roosevelt)