CHOP without Gretchen

Memory, absence, and an eleven year old who keeps showing up with strength

2019 was the year everything changed for us. It was the year Gretchen was diagnosed with breast cancer, and the year we found out that both Gretchen and Fiona have Li-Fraumeni Syndrome.

Our first visit to Children’s Hospital of Philadelphia was in December of that year. The first few trips were scary since we didn’t know what to expect from scans and blood draws. But we always made them fun by exploring the city, checking out museums, and almost always making a trip to Goldie’s for some amazing food.

Over time, those visits became part of our rhythm. We have gone so many times now that Fiona genuinely looks forward to being in her favorite city. Every trip is about staying ahead of anything that might be developing, meeting with the Cancer Predisposition team, and doing everything we can to protect her future.

Because she started so young, Fiona became a favorite at CHOP. Nurses, doctors, and staff were drawn to her cute little personality. She loved the attention and brought energy into a place that usually does not have much of it. There were times I could not go and she went with Gretchen, and Gretchen always found a way to make it fun.

This past week, Fiona and I went back for her annual visit, the first one in over three years. I was nervous going without Gretchen because I knew exactly what it would feel like, and I was right. We missed her the entire time. It felt quiet and empty in a place that has always been tied to the three of us.

What made it even harder was that many of the people who knew Gretchen had no idea she had passed. We had to explain it more than once, and each time it forced the reality of it right back to the surface.

We met again with the same team who has been caring for Fiona for the past six years. They could not believe how much she has grown. One of her doctors, who loved Gretchen and was loved right back, told us she still thinks about her. She said Gretchen was an incredible woman. She also told us she still has a picture Fiona drew for her during that first year in her office, and that even after moving offices several times, it has always come with her. She said our family left an impression on her and that we are the kind of family she does not forget.

There were visits in the past where Fiona was so brave that the staff would give her a toy as a prize. This time, my 11 year old did everything she has always done, just as bravely, and there was nothing waiting for her at the end. She picked up on that immediately.

It made me realize how much has shifted.

Sometimes I look at Fiona and forget she is only 11. She carries herself like a teenager. Some days I catch myself thinking she looks like a college student.

She is growing up right in front of me, through all of this, and I am just trying to keep up.

*We got her test results back and everything is clear. Everything is exactly how it should be. Thank goodness.