Update #14: The MRI Results

#ItsJoTime

Josephine’s MRI from last Thursday still shows a tumor in her brain stem. The tumor is smaller than the MRI we took in June. It is also showing signs of continued necrosis (dying parts). Her oncologist says this response to her treatment of radiation and chemotherapy is encouraging. The tumor is shrinking, parts are dying. But it’s still there.

The next step with Josephine’s amazing medical team is a biopsy. If you remember back to early June (Update #1), we wanted to do a biopsy as a first step, to find out what type of tumor we are dealing with, in order to fight it as efficiently and effectively as possible. In June, her symptoms worsened so quickly we didn’t feel we had the time needed for recovery before we could start treatment. We made the decision to postpone the surgery in order to start radiation sooner. Our bet paid off. Clinically, Josephine is substantially improved. She is running. Jumping. Yelling. Singing. She’s now met ALL of her original goals in physical therapy. The tumor is smaller, her symptoms are less.

So now, it’s back to the question of what is this thing? We’ve scheduled an open craniotomy (brain surgery) for Josephine for Tuesday, September 11. We’ll report early and she’ll get started mid-morning. The procedure will take several hours. I’m asking again for your thoughts, prayers, light, love, and lip-sync videos. After the procedure, we’ll be in the hospital for a few days, then we’ll be hoping for good news in the pathology report (most likely about a week after the surgery). Of course we hope this is a low-grade, slow-growing thing and not a high-grade, fast-growing, scary thing.

Josephine is fine. She saw her “brain pictures.” She knows the word “biopsy.” She knows she’s going to have a doctor cut into her head and brain and she’ll get a really large bandage. She knows she’ll be in a room at the hospital again. She got her port accessed and blood drawn today with not even a tear (just a quick holler). We’ve been able to keep the conversation hovering around Disney World and meeting princesses and her birthday party. Thank you all for your part in giving us these worthy distractions to her current state.

Ryan and I are tired. We have so much more to tell you all, but are working through each emotion, piece of information, probability, possibility, and what-if as a team. It’s exhausting. Many questions we don’t yet have answers to. As we get these answers and continue to form her treatment plan, we’ll make sure you all have an idea of what that looks like and what you can do to support Josephine along the way. Thank you for being here with us on this road. Ready to keep going? We are. #ItsJoTime

-CHW