Day 521

day 521

We left Gainesville this afternoon. Gainesville still feels like home to me, in a strange way. Not like my home feels now, or like my home when I was a child. But it’s a home to my heart. I learned to view the world differently in Gainesville. I fell madly in love in Gainesville. My twin sister lives in Gainesville. I witnessed my first birth in Gainesville. And this weekend, that baby whose arrival I witnessed graduated from high school. Gainesville is a place I associate with love. 

Lilye and Benji share a fondness for duct tape crafts, and Lilye gave Benji a roll for the road. He texted her a photo of his finished wallet during our trip home. I love when our boys spend time with their cousins. They are both such wonderful role models; kind, thoughtful, creative adolescents who are true to themselves. I’m thankful for their influences.

Tuesday, Benji will have his monthly treatment at All Children’s. Tomorrow, he has his first appointment with our new family care practitioner. Our former doctor, who was much loved by all of us, passed away recently, and Benji hasn’t seen a physician outside of All Children’s since before his diagnosis. So this is a big step. For things like the little ingrown toenail that won’t heal, or mild respiratory affairs, we need to start re-integrating with our local medical professionals so that we have a plan in place for when Benji’s off treatment.

The appointment will just be a physical and a meet-and-greet to catch the new doc up to speed on Benjamin’s treatment. I have posted in my online moms’ group to glean wisdom from those before me. I am specifically interested in organ care after treatment ends. Should he get blood work at regular intervals (separate from his oncology screens)? What should we be looking for long term? Can we talk about some serious detoxification please?

It will be a new balance we’ll have to find. Just today, I noticed Benjamin’s feet growing increasingly red and irritated, a common side effect from his oral chemotherapy. Is this something we will bring to the attention of the family practice doc? Or save this for the oncologists? Or the moms’ group? We’ll figure it out.

The boys want to spend as much time as possible this summer with their friends. Right now, Banyan has a friend from down the street over to spend the night, and Benjamin is down the street with his buddy, wanting to sleep over. If he executes his plan it will be his first sleepover with anyone other than family since his diagnosis. I’m thankful for “friends down the street.” I will walk down in about ten minutes to give him his nightly medicine. If he stays with his friend, great. If he comes home, also great. It’s up to him, and I am at peace with his growing independence. This is a wonderful feeling.

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