Update #16: A Toast to the Tumor

Last night, we received the best news that we could have hoped for at this point in our journey. Josephine’s tumor is rated as a Pilocytic Astrocytoma Grade 1! GRADE 1!! This is the slowest growing, least likely to return type of tumor. If you HAVE to have a brain tumor, this is the one you want. Now, before you get too excited, please remember that we still need your prayers, thoughts, light, and love. This is far from over. Josephine still has an active tumor in her brainstem. Surgical resection is still not an option. And while we have these basic results, we are still awaiting more detailed molecular level results that will tell us if there are any (scary) gene mutations in the tumor that would indicate its ability to transform into a higher grade tumor, one that would have a higher likelihood of growing faster and returning.

Last night, we toasted. But, toasting your daughter having a brain tumor that is rated Grade 1 is a bit like toasting to the fact that the hurricane that is making landfall was downgraded to a Category 1. A category 1 is still scary. Still has the opportunity for significant damage. Still could be a tragedy for some.

Until we have further detailed results, we won’t finalize the next steps in Josephine’s treatment plan. The good news in the pathology report is that they saw dying cells, not growing ones. This may mean we wait to see what happens. If her tumor has scary mutations, though, we may opt to be more aggressive with more chemotherapy. We don’t want to give this thing time to sneak up on us again. Please give us a week or two to finalize our decisions based on as much information and informed expert opinions as possible. The tumor is in such an important part of Josephine’s body, we don’t have much margin for error. Even though it is slow growing (which we are SO HAPPY about), it is still in a difficult spot. We want to balance intervention (and side effects) with probability of cure.

The tough bets we’ve made so far have paid off. Josephine is doing phenomenally. Despite only being a week out of brain surgery, she’s down to only one dose of ibuprofen a day, less than most of us take for a simple headache. Her physical therapist reported she had better balance today than she did the week before the surgery. She’s running and jumping, and (the best part) – singing loudly. Really loudly. Through the generosity of a local financial firm, we got to experience Disney’s Frozen on Ice this past Saturday with tickets donated to the children’s hospital. She sang along the whole time.

If you happen to run into Jo at Kroger, she’ll show you her scar, she says it looks like a “football” because each incision is laced up with one single stitch. She’s so proud of what she’s been through and has no shame in the fact that half of her hair is shaved off, or that she’s not steady on her feet sometimes. She doesn’t care. She’ll tell you about her brain tumor as if it’s as normal as a new haircut or recent dress purchase. Her humor, humility, and drive are refreshing and continue to impact the way Ryan and I see the world. We are inspired by her every day. We are struck by the fact that to us, this is flabbergastingly consequential, life-and-death shit, and for Josephine, this is Wednesday. And tomorrow is just another day. #ItsJoTime