Celebrating “Normal”

Tuesday morning Tate had an appointment with the Nurse Practitioner Angie and the Cortrosyn Stimulation Test (ACTH Stim Test) Greg wrote about in the last post.

Both went pretty well. Tate was cleared for his Thursday spinal tap and chemo, but somehow his ANC has dropped again. This far into the Maintenance Phase it’s supposed to be more steady, but it’s not. It hadn’t dropped so much that they needed to decrease his daily chemo dose, but it’s low enough at 542 he’s very susceptible to illness.

Tate’s test results from the ACTH Stim Test indicate his Endocrine System is functioning properly. Hooray!!! His levels were well within the normal range, which surprised us because it’s the first time in a long time Tate had anything “normal” about him. It’s great news.

We all really liked the Endocrinologist. I’m glad Tate’s test results are normal and doesn’t need to meet with her again, but she’s someone I feel like I might like to know on a friend level. I joked to Greg that I’d like to ask her to meet for a beer sometime, except that I don’t drink beer and she probably wouldn’t come. Ha ha.

Thursday morning Tate had his Lumbar Puncture with intrathecal Methotrexate and Vincristine. The Anesthesiologist had us all laughing. I can’t remember much of what he said, but he definitely put us all at ease, and Tate had a grin on his face as he nodded off.

We have learned Tate recovers much better when he gets a bag or more of fluids after a spinal tap. His headaches are less severe and don’t last as many days. In this picture he’s sleeping off the propofol and getting fluids pumped into his system at as high a rate as possible. Once he’s fully conscious he wants to get to his own bed right away, and it’s a bit of a fight to get him to stay. 19 months in, we’re finally figuring out how to make it better for him.

Abandoning most of the paranoid, anti-social behaviors I adopted during the first year of Tate’s illness and integrating back into a more normal life has landed me with a little cold. It’s almost liberating. I have put so much energy into not getting sick, and now that it happened I feel like I can go anywhere.