Monday 6/11/18 @ 12:30am

#ItsJoTime

Josephine is scheduled for a “suboccipital craniotomy” (open brain surgery) to try and biopsy (check out) the tumor that is intrinsic (completely inside) to the medulla of her brain stem (important thing) on Tuesday, June 12. We believe this will happen around 11:30 a.m. or so Central Time, so get those thoughts and prayers ready.

While the biopsy is risky, we are confident in our surgeon, Dr. Wellons, and his team and feel strongly the risks of the surgery are far less than choosing the wrong course of treatment for a tumor in such a critical place in her body. If you disagree, we don’t care. Don’t tell us. I cannot say enough how thankful we are to Dr. Sunny Schaeuble Bell for finding this beast. There are not many weeks standing between where we are now and a very different story for Jo. As far as I’m concerned, we owe Sunny a debt we will never be able to repay.

The goal is for the biopsy to gather enough tissue to understand what this is and predict how it might behave so that we are able to devise a strong treatment plan. After Tuesday, Josephine’s care will be in the hands of Dr. Esbenshade, the head of Pediatric Neuro-Oncology at Monroe Carell Jr. Children’s Hospital at Vanderbilt. The tumor is singular and we have found no other signs of disease throughout Josephine’s body at this time. Because the tumor is in the medulla and not in the “pons”, we have a much better prognosis than many people who have been diagnosed with brain stem tumors. This is NOT a DIPG (so for all of you who googled “brain stem tumor” after my first post, you can take a deep breath and exhale, because Josephine’s future will hopefully not be that scary). If you want something to ask for, it’s “low grade” and not “high grade.” As far as exact pathology (name, type, and characteristics) of the tumor, we hope we are able to gather as much tissue as possible without any trauma to Josephine’s brain and will report what we are able to in about a week. The more tissue, the better the testing to identify the best possible attack. We currently believe that attack will most likely start with radiation, with potential chemotherapy if needed. Given the location, a resection (surgical removal) is completely out of the question. Again, don’t tell us to try that.

Josephine is totally aware that there is something in her head that shouldn’t be there and we’re going to go take a look at it on Tuesday. Before I signed the consent forms, I made sure of that. She has had a swallow study to see the effects of the tumor on the operation of her throat muscles and watched the x-ray video live as she aspirated (breathed in) fluid while trying to drink. She knows why she has a feeding tube right now and will tell you its so she can get a “balanced dinner” without putting herself at risk. She is taking steroids to reduce inflammation (swelling) and prepare for surgery. She has already gained weight in the hospital and, between temper-tantrums, still cracks fart jokes and sings along with mom. I would not recommend trying to parent a three year old on steroids because, well, ‘roid rage is real, but I much prefer cranky Jo to the potential alternative. She’s staying busy with all sorts of activities, including music therapy (duh!), henna, books, videos, stickers, and coloring everything with marker, including herself.

Ryan and I, and our entire extended family, have been just flabbergasted by the support we have experienced from all of you. I won’t list everyone here for fear of leaving someone out, but a special shout-out to my personal chief operations officer, Meredith Alvarez. If you have questions about how to help or just what’s going on, she’s your first line of defense. Check out her posts for Meal Train links, google documents, and more. I’ve set up an email for Jo, so if you want to send her anything, you can: JosephineWrenn@gmail.com.

We’ll update you on Tuesday as the procedure gets going, so get whatever positive vibes you believe in revved up. We’ll take all the help we can get! For tiny tidbits, follow along with me on Twitter @caseyhaugner using #ItsJoTime. We’ll post bigger items here for the time being.

Just typing THANK YOU is not enough, but it’s what I got. Love to you all. Let’s do the damn thing. #ItsJoTime

p.s.: Folks keep asking me “are you ok?” and I will tell you that I appreciate that. I am. I like having plans and taking on challenges. I do not like the waves of complete and utter devastation, but to be honest, those are mainly thinking about things I had hoped for and selfishly contemplate losing. If I reframe to think about Jo, I will tell you she is ready to get out of this damn hospital, ready to take on this fight, and a complete inspiration to so many people who have mobilized out of compassion for her. Already a life worth living and she’s only three. Not bad. Not bad at all.

-CHW