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

#ItsJoTime

Jo has been out of surgery for a couple of hours and is doing great! Her vitals are excellent and she’s remaining pretty comfortable. The neurosurgeon was able to get several good tissue samples, so we are optimistic about the ability to get pathology on the tumor. We are in the very capable hands of the pediatric ICU for the night and Josephine’s hourly neurological checks to this point have been wonderful. She ate some Frosted Flakes and juice for dinner and is resting well. A huge shout out to all of the doctors today, Vandy made sure we had an anesthesia team and nurses Jo knew and trusted, which was amazing. They even made sure Sophie was also taken care of. Jo has not complained once. I am so lucky to be her mom.

-CHW

9:25am The time when our daughter woke up ready to have brain surgery for breakfast.

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

Josephine turned 4!!  We are beyond thrilled that we were able to celebrate our beloved Jo’s 4th birthday in style!  Casey sat down and let Jo pick *all of the things* she wanted for her party and it turned out amazing!  We had a splish splash birthday BASH with Ariel (as a human, not mermaid Ariel under the sea 🙂 haha!)

Papa (Jim Haugner) built a kid-sized replica of Prince Eric’s castle, complete with working draw bridges and windows!, that the kiddos could play inside.  It was a huge hit with the littles and I know the parents appreciated some time to mingle while the kids were busy having fun!

We had an incredible food spread provided by Rocio & Shonna, two moms of Josephine’s earliest daycare friends Vincent and Jackson.  So delicious and adorable on the place settings Josephine designed!  There was even blue ocean water to drink!

Then, kids had a blast shooting water guns and whacking the life-sized Ariel pinata!  Definitely a memorable day for all involved!

Thanks so much to the family and friends who contributed, helped set up & clean up, and came from near and far to celebrate our wonderful Josephine!  What a fabulous day!
-MHA

Amazing cooks Shonna & Rocio

Sweet friends Vincent & Jackson @ the photo wall!

Opening presents at home…