Thursday 6/14/18 @ 9:40am

Prayer warriors: #ItsJoTime

The amazing team got the plan done in time and our sweet Josephine is in radiation RIGHT NOW!

Her beautiful brain is being surrounded by hundreds of beams of light.

“Halo” – Beyoncé

-CHW

Wednesday 6/13/18 @ 8:45am

#ItsJoTime

Ok team, please get those thoughts and prayers out again! Jo just went back for another anesthesia procedure to get a CT scan and prepare her for radiation. Not sure how long this will last, so a barrage of funny jokes would be appropriate to help me pass the time.

-CHW

Wed. @ 12:30pm

Where my thoughts & prayers peeps at? New request: mathematicians, physicists, & dosimetrists currently working to take info about Jo’s brain & tumor & devise a plan to attack the latter, not the former. Pray they work accurately & QUICKLY! Hope: start tomorrow🤞🏼 #ItsJoTime

-CHW

Thanks for the cupcakes, Caroline!

Wednesday 6/13/18 @ 6:30am

Jo: “I don’t want you because I don’t NEED you.”

Not sure what is harder, raising a kid with brain cancer, or raising a kid who is so fiercely independent and confident that she demands to do it all herself. Unhook the monitors, carry the IV poll, despite it.

#ItsJoTime

-CHW

Many of you have asked how to best support the Wrenns from afar while #ItsJoTime.

To send donations to the Wrenn family, please use PayPal: josephinewrenn@gmail.com

To send pennies, care packages, or cards use:

Josephine (or Casey or Ryan) Wrenn

PO Box 68430

Nashville, TN 37206

To provide a dinner through the MealTrain, visit https://mealtrain.com/20ydvm

*Please note that we have enough stuffed animals, cozy blankets, and stickers/coloring books for now. Given the unpredictable nature of the upcoming weeks, funds the family can use at their discretion are the best way to help. If specific needs arise, we will update!

Thanks again for your overwhelming love in this battle! 💖

-MHA

#ItsJoTime

Tuesday 6/12/18 @ 2pm

Waiting to go back for surgery to install an access port and get a lumbar puncture. Will update as we know how she’s doing. Appreciate the thoughts and prayers!

-CHW

Tues. @ 8pm

Thank you! Thank you! Thank you, all! Josephine came out of surgery flawlessly! She now has a port that can be accessed during treatment, just like Chemo Duck and is just as cranky as ever! More updates to come about CT tomorrow and development of radiation plan! #ItsJoTime

-CHW

Tuesday 6/12/18 @ 2:30am

#ItsJoTime

There have been three times in my 35 years that my life has flashed before my eyes. One involved an unfortunate run-in with a black bear camping in Arkansas, one was a close call while driving a go-cart in New Orleans, and one was today when we realized that Josephine’s symptoms were worsening. The biopsy plan was a good one. Get more info. Be cautious with treatment. The problem is that we are small, and our plans are laughable. Life continues on, as John Lennon would say, despite them. So today, we called the whole thing off. This tumor is moving and we’ll be damned if we’re going to let it get ahead of us. You know I like winning and Josephine is that on steroids. (Literally, she’s still on steroids. Please send help.)

The current working idea is that we’ll do a few procedures in the next day or two to get her ready for radiation and chemotherapy, which we want running by Thursday. Let’s forget if this beast is low or high grade, let’s make it no grade. New request: we pray for two good days and schedule ease with our phenomenal oncology team. And keep the distractions coming! Bracelet making (thanks Lori Vess Cantabery) with her best friend, Eleanor today, with visits from Elizabeth Guenther McMillan, Brett and Eleanor Parker, Katye Manz, Katherine McCarty, and her teachers, Janette and Yvette Breveard were amazing!

There were some scary moments today. I like working a plan. I don’t like not being in control. (You can all get a good chuckle there.) My family, particularly my amazing partner in everything, Ryan Wrenn, is my rock. The wonderful team at Children’s is also a blessing.

We had a DJ session today and Jo’s song choice was “Shake it Off.” Damn right girl, get to shaking. #ItsJoTime –CHW.

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

Thursday 6/7/18 @ 11:30pm

How do you tell your friends, family, and peers that your three year old child has a brain tumor? How do you tell your three year old child? How do you say, “there is a mass growing in the medulla of your brain stem, you know, that thing that controls your breathing and your heartbeat”? What words do you choose that strike the right tone? Not too nonchalant. Not too fatalistic. How do you reassure people you trust, who love you, who want to offer help and support and want to hear from you, that you have to take a few weeks, a few months, before getting back to them? What do you say to explain the weeks of worry and lack of communication and somehow, make it seem like you both knew things could be better and thought you were doing the right things the whole time? The truth is I don’t know. I don’t know how to have the “my daughter has brain cancer” conversation. I don’t know what to expect. I don’t know how long. I don’t know what you will do. I don’t know what I will do. I don’t know when I will. I don’t know how to have a daughter with brain cancer and do anything else at the same time.

This is new. I don’t know how to say “thank you” to a pediatrician like Dr. Sunny Schaeuble Bell. A pediatrician who texts late at night and calls early morning. A pediatrician who saw Josephine talking quietly at an appointment for her little brother’s ear infection, and said “something isn’t right – that’s not our girl.” How do you thank a person that orders an MRI and moves heaven and earth to get it scheduled the next day when the calendar is full for weeks. How do you thank her other patients for their grace when she cancels her clinic appointments to show up before you get the results to tell you herself. To call your best friend and husband and say the words you cannot. To forgo seeing her own children to sit well into the evening hours with yours. To listen to every oncology and neurosurgery conversation. Who offers details you forget. Who serves as your historian, calendar, record-keeper, and personal tissue-provider? I don’t know what to say to her. Homemade cookies seem trite.

I can only try. Only try to find the right words to say “thank you” to a best friend like Sarah Swyers Parker who answers her cell phone while boarding a flight to Italy, and, as if she was playing the lead in a romantic-comedy, unbuckles her seatbelt and just walks off the damn plane. How do you deserve someone like that in your life? Someone who pushes back a trip planned for months, who leaves her bags on a jet with its engines on, who drives to the hospital to sit next to you and ask the parade of doctors questions you cannot even form in your mouth. Words you cannot spell. Procedures you cannot describe. How do you convey your appreciation for a person to distract your steroid-and-brain-tumor-induced temper tantrum of a child with painting and drawing and playdoh and piano? How do you express gratitude for providing someone who your child trusts completely so you and your husband can spend a quiet hour alone with an oncologist to ask the questions no one ever wants to have to say out loud? How can I ever repay a person who explains, in fantastic, three-year-old friendly language, exactly what is going to happen next and why.

And how do you say, “I love you” to a sister like Meredith Alvarez, who, on her own damn birthday, picks up her infant daughter and packs a bag and boards a plane to land and be in the hospital room in less than 24 hours from the call. Who has already called the pediatrician and the best friend? Who gets on the phone with your parents and explains what has happened, what is going to happen, and what they need to do? How do you say “thank you” when her story-telling-teacher-voice doesn’t flinch while reading the book to your daughter who doesn’t understand why we’re still in the hospital and why she can’t go home. Who calmly goes to your house to feed your dog and watch your son and take him to daycare when you cannot? Is “I love you” enough?

Is it enough for a brother-in-law like Travis Wrenn? Who cancels work and turns around to drive back to Nashville when the MRI is scheduled? Who shows up just in time to be told he has to turn back around and pick up the baby brother from daycare. He has to feed him and hold him and administer medicine and try and explain why mom, and dad, and sissy aren’t coming home for a while. He has to call the grandparents and say words that are not only unexpected but unimaginable. Is “thank you” enough? Does it cover it?

I don’t know. How do you repay a friend like Caroline Gardner, who walks off her 12-hour night shift directly onto your hospital floor with a strong coffee and an even stronger hug? How do you say, “this is just what I needed” when she drops off a bag of the only snack Josephine has eaten in days (Cheetos, if you must know), along with dinner and dessert. How do you say “I hear you” to the un-count-able calls and texts and emails and messages from colleagues and co-workers who activate prayer warriors in all 95 counties of your state, when you don’t have the energy to reply? How do you do it? What do you say?

How do you press “post” on something on Facebook that you know will change the course of your life?

Ryan and I are so thankful to have each and every one of you in our lives. We are so lucky to have a children’s hospital in our backyard that is nationally ranked for pediatric oncology. We are so thankful that we don’t have to worry about dinners, or dog-walking, or having the best pediatric neurosurgeon, or having one of the few oncologists in the world who successfully treats pediatric brain tumors, because the worry about our dearest Josephine is enough to carry. The only things I have found to say are this sucks; and, we love you. We are thankful to have your love for our daughter. To have your consideration for whatever we need to be considering. Because right now, we have no fucking clue.

Please pray for Josephine. Please tell your friends. Please laugh at her jokes that I share on Twitter. Please laugh at my jokes when they are inappropriate because how else do you freaking talk about your child having a brain tumor?! Please make funny videos for us to show her. Please lean on each other. We do not have answers to your questions. We probably won’t for a few weeks. Let us figure it out. We will share as soon as we have something to share. Something more than “holy shit, there is a big thing in her head that isn’t supposed to be there,” because that’s all we have right now. Thank you for your care, your thoughts, your understanding and grace. We are so appreciative to have you in our lives.

-CHW

Welcome to our page for updates on Josephine Wrenn’s journey to conquer cancer! Feel free to share the site (itsjotime.com) with family, friends, and colleagues so we have as many folks supporting Jo as possible. Use this page to see updates on her procedures and treatments and how to contact us. Also, spend some time on the Meet Josephine page for pictures and videos!

For now, Casey’s sister Meredith (“Auntie M”) will be compiling information, but updates will be marked with the author’s initials. Ex: -CHW = Written by Josephine’s mom Casey

The whole family thanks you for your love, support, and prayers. Get ready for the fight of your life, cancer!

-MHA (Auntie M)