The Waiting Game

Today at work I received a much awaited phone call from CHOP (Children's Hospital of Philadelphia). The nurse I spoke to said they were still waiting for all of our records to arrive, but wanted to get us on the books for an appointment. She asked what the specialists so far had gone over with us and I explained where we were at in the process. After discussing everything we scheduled an appointment for next Friday (2.19) morning. This next week and a half of waiting is going to be tough, but fortunately my OB here locally is so great and has offered to do an ultrasound for me any time I am feeling anxious or scared. 

The appointment at CHOP will entail a two-hour ultrasound followed by an MRI. The MRI will tell us if the tumor is cancerous or not, how much of it is attached, where it is attached and what the immediate risk to her airway is. After the MRI results are back we will meet with the specialists and go over what they think the best plan of action is.

I trust these doctors whole-heartedly. When speaking to the nurse on the phone I asked how many cases like ours they see per year - her response was around THIRTY! That is so incredible. After talking to UVA who sees one case every three years, Wake Forest who sees one case every year and UCSF who sees three to five cases a year I was expecting that they [CHOP] at most saw ten. Hearing that they see thirty though is so unbelievably comforting. There are roughly only 100-200 cases throughout the entire United States each year and CHOP is seeing such a high percentage of them. We really are in the BEST hands.

Graphic by  Ashley Bush

Graphic by Ashley Bush