A Big Week of Appointments: NICU Follow-Up and Neuro-Oncologist

This is a big week, gang. Jax has two huge appointments.

The NICU follow-up is tomorrow. Any baby who spends time in the Neonatal Intensive Care Unit is followed closely for any signs of delays or concerns. The follow-up appointments are done in a clinic at the hospital, not in the actual NICU. Usually, there is a 6 month, 12 month, and 2 year follow-up, depending on the hospital and the kid. I expect the appointment to go well! (Ha, ha – did I just jinx it?!) Jax will stack the blocks and tell the doctor “cank a koo” (thank you). I think we will leave with a positive report.

And then, Wednesday is the neuro-oncologist appointment. We are going to the Journey Clinic: Center for Children with Cancer. Holy shit. It’s scary just typing that! The clinic is part of Amplatz Hospital in Minneapolis and it’s a highly specialized and respected clinic for kids with brain tumors (benign or malignant). What is the doctor going to say? I have no idea! But I am very much looking forward to information.

The past two weeks have been torture for me – I know just enough to be dangerous on Google and not enough to find any peace. If we can just get a name for the tumor and some solid plans, I will feel much better.

I can’t believe my kid has a brain tumor. What the hell?

Our life feels like this playgound: a crazy mess of steps and swirls and danger and reprieve. A place of exploration and exhaustion. A place where anything can happen…