#ItsJoTime The port is out. The August MRI results are back. Kindergarten has started. The past week has been a rollercoaster of emotions. Josephine is fantastic. She walked into the classroom, sat next to a friend from the playground, and didn’t look back. Not that any of you thought she would act “shy” or anything, right? 🙂 In the past seven days, she’s undergone surgery to remove her access port (central line), had icecream for dinner, said good-bye to daycare best friends, started school, went on a ladies lunch date, met with her oncologist, laughed with her clinic nurses about all of the numbing cream she put on her legs before she got her kindergarten shots, and learned 10 different words and phrases in Spanish. I can’t keep up.

The last scan results are great. What’s left of the tumor is even smaller, with no enhancement. Sure, she’s got a bit of swelling left in her brainstem, but nothing is growing in there. We’ll do it all again in three months. The days leading up to the scan are always anxiety-producing, so we will continue to take your light, love, and prayers.

There have been some low points this week as well. Another child of a family we met through this phenomenal cancer community passed away last weekend, and while we were dropping our daughter off to start school, we were also thinking about the families who go through what we’ve been through who never get to do such a thing. After I dropped Josephine off, I sat in the car and tried to compose my thoughts. It was so sunny. It was a perfect 78 degrees. The air smelled of newly mowed grass. The light filtered through the slightly blowing branches. The pale pink crepe myrtle flowers dusted the windshield. Moms and dads pushed strollers and walked their dogs. I just sat there. I had planned to do some work in the two hours before I picked her back up (it was a half day for her), but I could not. I couldn’t drive home. I couldn’t walk around. I could just sit there. I tried to finish the donut from the PTO’s “Boo Hoo Breakfast”. I couldn’t stomach it. I sipped the rapidly cooling coffee. I sat there. The car engine hummed softly. The sunlight got warmer and warmer. And I sat.

I suppose things get easier. There are way more days now I don’t think about cancer than those that I do. But then there are days when I have to sit in silence in a sunny SUV for an hour before anything makes any kind of sense. On Josephine’s last day of Pre-K, an adult in her daycare told me that Josephine was here because there were big plans for her. I am so unexplainably grateful that we are here this week, and I can’t wait to see what she accomplishes – in Kindergarten, and in whatever comes next. She’s ready for it. #ItsJoTime

Auntie M here with an apology to the loyal followers of It’s Jo Time! I have severely neglected my duties as chief website poster/relayer of Casey’s updates the past few (many!) months. There are plenty of reasons why, but no good excuses — suffice to say I am very sorry. The only upside is that our last scan was positive! Woohoo!!

I will go back and post a few updates from Casey from the last few months, so check out previous posts if you’re curious. Jo had another scan today (7/31/19), so I’ll get the newest update out when we have it! Promise 🙂

As always, thank you all so incredibly much for the love and support you’ve poured into our family over the past year+. It has been an unreal journey, but your love and good energy has helped make such a difference! XO

-MA

‪#ItsJoTime fans, it’s scan day. Not only that, it’s surgery day to remove her access port. She’s super excited to see all her docs and nurses, not excited to lose this lifeline that’s been a part of her for more than a year. Red lipstick, happy thoughts, and prayers appreciated!‬

What a difference a year makes! Jo’s last radiation treatment was one year ago today. So thankful our agenda this year includes friends, pool time, and playing outside with no feeding tube. #ItsJoTime

Most days I’m totally ok, not thinking about Jo’s cancer. But then there are mornings when her singing a specific song loudly in the car on the way to school makes tears stream down my face. Thinking of all of our friends who are still fighting their fights today, particularly those who got tough news this week. We’re with you. Keep fighting. You are so strong.

Update #20: The case of the missing peanut

#ItsJoTime

More good news! Josephine’s tumor has continued to shrink and is no longer “enhancing” on the MRI pictures, which means with the untrained eye, you can no longer see a large white mass in her brainstem. If you know how a brainstorm is supposed to look, then you can kind of tell hers is still a bit larger than normal, but the drastic swelling, mass, and distorted features are nearly gone. When she looked at the pictures herself, she professed to her oncologist, “you can’t even see my big white peanut anymore! Is it gone?!” The lack of enhancement is a great sign – one that could mean the tumor is no longer active and is not likely to return. While the odds are ever in our favor for this mass, we also have to keep in mind that the large dose of radiation we shot her with still comes with a chance of producing future growths down the road. So, we’re going to keep scanning her every 3-4 months for the next few years.

Josephine is doing great. She has no neurological symptoms at all and if you just met her, you would NEVER guess that she had ever been as sick as she was one year ago. The fact that the one year anniversary of her diagnoses is approaching is starting to feel very weighty. It was this time last year that we were struggling to diagnose her strange symptoms as she continued to decline and lose weight, her personality changing by the day. Milestones from this time last year (spring school pictures, a trip with friends, Mother’s Day, Memorial Day) are some of my most difficult memories. We knew she wasn’t normal, but we didn’t know why, and the fact Ryan and I kept going to work and about our business as usual makes me sick to my stomach to contemplate. We are hopeful that the passage of these milestones with fresh eyes will ease the pain of last summer just a bit as we are lucky enough to wake up as a family each and every new day.

What was wonderful about this week, besides the good news of the missing peanut, was that we got to hang out with some of our favorite medical professionals during Nurses Appreciation Week. I know I write a lot. I know I love writing. I know I express myself, my worries, my joy, my uncomfortableness, through stories. But I can not put into words how much joy it brings me to see Jo with her nurses. She loves them. They love her. Despite screaming when her port gets accessed, Josephine loves to see Evan to have her do the tough job of the poking. Molly Napier and Michele in peds are there to drive her down the hall on a translation cart, see who can stuff more M&Ms in the mouth at once, and argue over who should eat the Cheetos or where the sheet or wires or tubes should be placed. Jo LOVES going to the hospital. She loves seeing her friends, telling them about her dance class, how she’s heading to kindergarten, and updating them on the latest exploits of #WreckItRandall. She has never once refused an appointment, an anesthesia, a poke, a measure, an exam. She bursts out of the elevator yelling at Sarah to check her in to clinic. She crawls behind the desks and sits on their laps to watch them work to help other kiddos. This experience is not one I would wish on anyone, but continuing to be in this place of visiting our friends every couple of months, well, that’s not something we are going to complain about. And to all of you medical professionals out there – be you our very special nurses or someone else’s (or perhaps, a nurse-in-training), know that your contribution to families like ours is immeasurable. The comfort, strength, and happiness you give us is matched only by your quality care. We are so truly lucky to have you. And if all it cost to get you in our lives was a trade of that damned little peanut, we sure came out winners in that deal.

We love you all. And we will see you in August. Next up, we schedule a surgery to remove Josephine’s access port and then get back to rolling in the dirt and swimming in rivers and lakes like a good southern gal at the end of school. We’re ready for summer. #ItsJoTime

This is what it looks like to get ready for your daughter to have follow-up scans. Super waterproof Japanese mascara and a Never Ever Give Up shirt. If you’re the praying type, we need them. If not, we’d love a 10 second meditation. Let’s do this. #ItsJoTime

Josephine was featured on the Adventure Science Center page!

Check our our girl beaming with pride at preschool 😉

Pics for PreK graduation!

Update #19: Good news, dancing queens, and other stories

#ItsJoTime

It’s good news, team! While we haven’t officially met with our oncologist and neurosurgeon yet (that will happen next Wednesday), we received word that Josephine’s MRI showed “continued decrease in size and enhancement” of her tumor and “improved mass effect” – which, translated, means an ever-smaller brain tumor and less swelling/pressure on the important parts of her brainstem. Wow.

It takes time for this type of news to sink in. It’s not like the immediate thrill and euphoria of a football score to take the lead just before the time expires. It’s more of a warm disbelief. A waiting for the other shoe to drop. A question about how we could possibly be so lucky. The odds just keep breaking our way, and we’re wondering how long that will last with such a fragile part of her brain and such an unknown disease.

I’m writing part of this update while sitting in the waiting room of the Nashville Ballet school, surrounded by parents on devices and little girls with buns and tights. Josephine just walked back into the studio in a row of girls with blue leotards. I don’t know which one of us was more anxious about this whole dance thing, me or her.

Josephine’s amazing physical and occupational therapists said dance would be the perfect thing to continue her core strength training and balance improvement after she graduated from therapy. Josephine’s Grandmom graciously purchased a semester of classes (and the cute leotard, shoes, and bag) for Jo’s Christmas gift. We came to the open house a few weeks ago to meet her teacher – the first thing Josephine said when she saw the bars of the studio and the colored dots set up for jumping (leaping?!) was “this is just like therapy!” as if it was the most natural thing in the world.

She’s excited, but she’s also a bit apprehensive. She doesn’t know any of the other girls yet. She doesn’t know what the teacher will ask her to do. She doesn’t know if she’ll be able to physically do it. Neither do I. But I’m anxious about a whole other set of things that she doesn’t even seem to realize. Like, how you can see the shape of her access port on her chest through the thin blue fabric of her leotard. Or how the required ballet-bun-hairstyle means her short hair growing back from falling out because of radiation and shaved for a craniotomy, and the craniotomy scar itself, are clearly visible. I’m also anxious about what other parents and other kids will think of us and how they will interact with Jo. Because she looks so good lately, it is not immediately apparent that she was ever sick. And telling someone “she still has a brain tumor” is just not something one does nonchalantly. Alas, how lucky I am to worry about such things, rather than the alternative.

The power of this moment is not lost on me. The appreciation I have for even being able to sit on this chair right now is nearly overwhelming. Less than six months ago, Josephine could barely walk. When she did, her balance was poor, and she would careen into walls and furniture. She could not jump. She could not dance. She could not walk up and down stairs by herself. She did not have the strength or balance to pull her clothes on or off. She spent most of her time curled up in a hospital bed or on a couch, hunched on her side watching videos, attached to machines with wires and tubes. The fact she ran into this building, got dressed herself, and followed the line of girls gracefully and straight down the hall to the studio is in itself a bit of a miracle. Thank you again for all of your prayers and well wishes, we are certainly benefiting.

The week before last, Josephine was tested for early entrance into kindergarten. She misses the cut-off date here in Tennessee by just a few days and her current Pre-K teachers assured me she was ready. She aced the test and is so excited about starting school in the fall! What did she miss on the readiness assessment? Well, she couldn’t stand on one foot for 10 seconds. Sigh. I know why. Maybe dance will help.

Ready for the next big thing? We are. #ItsJoTime

Alright, Jo fans. It’s scan day. Put on your red lipstick, and raise up your glasses, prayers, arms, however you do. Here’s to a positive MRI. Let’s do this. #ItsJoTime

Update #18: All good.

Thank you all for being patient for an #ItsJoTime update. Ryan and I both working full time and having both kiddos back in school mean we don’t have as much time to sit around and ponder as we used to when Jo was inpatient. It also means I pretty much fall asleep on the coach around 9 p.m. of utter exhaustion. Bear with me.

Last week, we learned that Josephine’s last MRI showed a continually shrinking tumor. One that has even more holes – evidence of dying tissue. Sure, it’s still there, but there is also a lot more of her brainstorm visible where the massive tumor used to be. We can’t yet declare victory. In fact, we may never be able to truly declare victory. But this picture is as good as we could have possibly hoped for at this time in our journey. The next step is another MRI in 3 months – February.

In the moment, I couldn’t process it. The oncology team was in-and-out pretty quickly during our follow-up. They were all smiles and “see you next year.” I sat there numb. What did I just look at? Did all of that radiation and chemo just, I don’t know, WORK? It seems so unbelievable that she could be so sick, in fact, just weeks away from not making it, and now she’s just, normal again? Amazing.

It hit me a few hours later. Since our clinic appointment ended pretty quickly, Josephine asked to go see her favorite nurses (Leslie Walker Mader and Tresa Sadnick) in Radiation, so we walked over and took the elevator down to the basement to surprise them. When Les walked in, Josephine ran, RAN, to her and JUMPED into her arms. When she was in radiation, she couldn’t walk, much less run and jump. Les barely saw her awake, let alone squealing with delight. “I have good news!” she yelled…”My brain tumor is SMALLER.” Tears welled up in Les’s eyes, and then in mine. Tears streamed down my cheek as we walked around to surprise Tresa (recently promoted to charge nurse for the team), and then down to the radiation team to hug the techs. The realization of how big the news was became much more clear with each step.

Every time she saw a new member of her team, Josephine would yell “my brain tumor is smaller!” and everyone would clap. You can guess how much she got a kick out of that! She told everyone on the elevator when she saw Ms. Yolanda from ENT. She continued updating people the next day at art class with her best friend, Eleanor, and Sarah Swyers Parker. And then again the next day when we did our grocery shopping at Kroger and ran into our favorite butcher, Tommie. “My brain tumor is smaller!” It echoed through the halls at daycare too. Ha, that kid cracks me up. Everyone this side of the Mississippi should know by now.

So, we take a break. We will focus on Thanksgiving and Ryan Wrenn’s birthday and Christmas. We’ll focus on family, fellowship, food, and football. We’ll take a break from constantly worrying everyday about her tumor. We’ll put that on the calendar for February. We will continue to ask for your support, and prayers, and light. This war isn’t over, but we keep coming out of each battle a little stronger than before. We’re all good here. #ItsJoTime

-CHW

Update #17: We can do this.

Today, we learned that Josephine’s tumor does NOT have the scary mutations we worried could potentially turn it from a Grade 1 tumor into a faster-growing, scarier version. We learned that the radiation team’s read of the progress of necrosis and pathology results have determined Jo’s treatment to date has a 90% chance of being successful WITHOUT additional treatments. We learned that her care team would NOT be recommending further treatment until after another MRI in 10 weeks. This is amazing news. We have not yet fully processed what this means. Josephine will be returning to daycare (“school”) on Monday. I am now back at work. The breath we have been holding since June 6 sits in our chests, ready to exhale. Are we ready to get back to “normal”? What does that look like anyway? We now wait until early November and another MRI to know what is next on this journey.

Today we also learned that a friend from the oncology floor (6A) at Children’s Hospital received news that was the opposite of ours. BrandiLee Schafran and Finn were the first people I met in the hospital the morning after Jo’s diagnosis. Bleary eyed and coffee-holding, I said hi. I remember looking at Finn riding in his red wagon. He was so close in age to Josephine and had his feeding tube, IV poll, and hospital garb. My reaction? “I can’t do this. I don’t have the strength to be the mom of a kid who is sick.” BrandiLee Schafran was amazing. Her hair seemed done, her smile was so warm and welcoming. She started asking questions I couldn’t answer. When she realized how new Josephine’s news was, her arms collapsed into a hug around me. She told me how she remembered those first few hours after diagnosis, then she pulled me back and looked me in the eyes and told me I could do this, as tears welled up in my eyes and I shook my head “I don’t know.” Before the end of that afternoon, Finn had colored Josephine a picture and BrandiLee had dropped off presents and balloons. Before most of you even knew Josephine was sick, they were there, holding us up.

Over the past few months, I have totally become a member of Finn’s Fans. I love how he devours avocados after he awakes from anesthesia. I’ve laughed with nurses and doctors our families’ share about how amazing BrandiLee is and how funny Finn can be. Other oncology moms (like Lisa Wolfe) and I have confessed that BrandiLee’s faith, positivity, and together-ness is an inspiration to the rest of us. Today, we cry and ache that the MRI Finn had this week revealed two new masses in his abdomen. While we await the biopsy results, we fear that this is a relapse: Rhabdomyosarcoma. My joy for Josephine’s news today is completely overshadowed. Everyday, there are 43 new sets of parents that get the shock that Ryan Wrenn and I did on June 6 and hear that their child has something growing inside them that isn’t supposed to be there. Every year, 40,000 children undergo treatment, and not all of them get to have positive conversations after scans. For every 8 conversations like the one we had today, there are 2 like Finn’s. I am at a complete loss. We could talk about what’s “fair” and what’s not, but we all know that’s not what this is about. The kids that are walking these roads are doing so because of factors far beyond our control, for reasons we will never comprehend. We are not big enough, smart enough, or important enough to be granted that. But we are granted this: the ability to use these roads to lead us all to better lives. To be models of service, grace, strength, grit, kindness, and love. To be reminded, every day, how precious the time we have with each other is, and to use that time to make things better.

I don’t know why we got good news and the Finn’s Fans got the news they did. I will never know. But I do know that the service you have all given Ryan, Josephine, Randall, and I the past four months has been a model for me to become a stronger leader and better friend. I know the grace you have provided us has taught me patience and understanding. I know the light of Josephine’s and Finn’s continued months on this planet will inspire people to go into medicine, will inspire those already in the profession to grow and mature, and will inspire other people who wake up and think “I don’t have the strength to do this [insert hard thing, like cancer, or nursing a newborn, or a difficult college quiz, or making dinner with two children after work] today”, that they do. It’s already inside them. You do. That strength is inside you.

Tonight, in addition to your thoughts for us, prop Finn’s family up, as they have done for us. And then, look around. See if there are other folks that need propping, and take a minute to lift them up too. Look in the mirror, and know that I feel your strength behind me, behind Josephine, behind our family. Your light, love, thoughts, and prayers were there when we were knocked down and didn’t think we could do this. And now, we are on our feet and walking forward, arm-in-arm with you all. We CAN do this. Next step, November. #ItsJoTime

#BeattheBeast #FinnsFans

Finn’s Fans 🥑

#LivingforEverything

Living For Everything

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

Update #15: Shiver with antici…pation.

In the 2002 hurricane season, Ryan and I lived in New Orleans, along the south Louisiana coast of the Gulf of Mexico. It was not my first hurricane season, it was not my last, it was not my busiest, it was not the most memorable. It was however, the first time I ever experienced a low, teeming anticipation of a large, upcoming storm. Two storms, quite close together, hit the gulf: Isidore and Lili. Both storms attained pretty strong intensity during their times, a category 3 and 4, respectively. Both gained strength in the gulf, both produced strong winds and rains, both were newsworthy, producing conjectures on storm surge heights and potential damage. I remember vividly the first hint of wind I felt brush a hair across my right cheek while walking across a breezeway in my dorm building. It was late at night, the night before one of the storms was projected to hit. Classes were cancelled, our “hurricane” party was scheduled. The night was nice. I was enjoying laughing with friends and had run back to my room to get something. I was alone. While walking, the breeze suddenly picked up. I paused on the breezeway and looked south. What was out there? How far away was it? Would it hit here? I knew it was powerful, sustained winds of more than 125 miles per hour. What did that look like? Feel like? Sound like? Have you ever stood in winds like that? Watched the rain come sideways through edges of a window pane? At that point in my life, I had not. Hurricanes were different than tornadoes, I just didn’t know what to expect. As I sat there and thought about it, I imagined a swirl of death and destruction, a walled, wet, evil you couldn’t see coming in the night. Something that would chase you through the woods and, growling, run over your back, holding your face down in the wet earth. Should I be here? Should I leave? I shook it off. Where was I going to go after all with no car and no money? My friends were waiting with beer. I brushed off the feeling and laughed, running to my room to grab whatever it was I needed, and headed back out. When the storm hit later that week, we hung out and had a great time. I walked home in torrential rains very late at night. And when I woke up the next day, the sun was shining as if it had never happened. We joked about these types of storms for months, years. And when Katrina was in the gulf, one reason Ryan and I didn’t immediately leave was we remembered nights like this. Nights when the news was scary, but surely the storm couldn’t be THAT bad. But then, once, it was.

As I sit here on my porch, I have a sustained buzzing in my chest and stomach. A tense, underlying throbbing of anticipation. Like the feeling you have when you know someone has heard you say something upsetting, but you haven’t talked to them about it yet, and you know they are walking down the hallway. I’m having a harder and harder time thinking about other things. I’m reminded of standing on that breezeway and looking south. What is out there? How evil is it? Can we outrun it? Can we withstand it? What will the surge be? The damage? We don’t know. The pathology report is still not filed. We don’t know what the next few weeks and months will look like. We know there is a tumor. It has the potential to be evil. It has the potential to be just rain, with sunshine on the other side.

Batten down the hatches. We’re riding this one out. #ItsJoTime

Editorial notes: (1) Upon fact-checking the names of the storms in this story, I realized the storm that was named between the two mentioned above was “Josephine.” (2) Props to the first person who calls me out for my cheesy Rocky Horror reference. (3) I write this with the utmost respect for the people on the east coast riding out a storm of their own. Let us all take this opportunity to send light their way as well.

-CHW

If ever there was a doubt that Josephine wasn’t the toughest cookie you know, guess who was discharged less than 48 hours after brain surgery? That’s right Jo fans, we are HOME! She’s got a bit of a sore head/neck but otherwise is doing great – walking, eating, and giving mom a hard time (back on steroids until tomorrow). Now we just wait on results!

#ItsJoTime

-CHW