(My apologies on posting this update a bit late…from Aug 29 -Mere)

Update (lucky number) #13

#ItsJoTime

Do you guys remember the 1984 cult classic “Never Ending Story”? Do you remember the heart wrenching scene where Atreyu’s horse, Artax, succumbs to the swamp of sadness? The legend says that whoever lets despair overtake him or her will sink into the swamp (quick-sand like) and be lost. I feel like I’ve been crossing a similar swamp since June 6. Struggling to lift my heavy legs up and down, stuck in waist deep muck. I have a goal. I need to get through this, but if I stop for just a moment, if I let myself not be busy, the despair starts to creep in. The doubt, the possible scenarios. If I let myself think about it, I feel myself start sinking.

Today, I misjudged getting ready for a meal. I normally plan everything so perfectly. When I put the food on, how long each dish takes, what I’m doing while I’m waiting for the pot to boil, or for the timer to go off. I load the dishwasher. Pour the baby’s sippy cup of milk. Feed the dog. I have to keep busy. I can’t let myself just sit there in the muck and think. I got to the microwave with 26 seconds left on the timer. Everything was done. The garnish was chopped, the plates were made. Drinks were poured. Silverware was in hand. I just had to stand there for 26 seconds. And think.

At work, I used to like this. I would put my lunch in the microwave, then run to the bathroom. If I beat the timer, I would call it my “ten second meditation.” I would close my eyes and focus on my breath until the “beep beep beep.” With my position, it was often the only few seconds I had to myself in a day. I loved it.

Not anymore. Those 26 seconds tonight felt like an eternity. Josephine’s MRI is tomorrow. Tomorrow they will access her port, put her to sleep, and take pictures of her brain, neck, and spine. They will do this with and without contrast to get the best picture possible. And we may not hear the full results until next week. They might see a brain tumor. It may be big. It may be smaller. They might see a beautiful brain. I don’t know. But if I think about that. What they might see. I start thinking about each scenario. And some of them, the despair starts to creep in.

Tonight, I couldn’t do it. I pulled the door open with 7 seconds left and figured no one would notice. I have to keep trudging. I can’t stop and worry. What is there is there. And we will take the next steps we need regardless. I won’t be much use to anyone if I sink too deep, now will I?

Please set a timer to say a prayer, send light and love, or just play “Shake It Off” tomorrow (Aug 30) around 9:30 a.m. central time. And don’t stay up late waiting for another update. We’ll send you something next week. We’re ready to know. #ItsJoTime

-CHW

Since Josephine got sick, we have gotten some pretty amazing support from our friends, family, and even strangers. Support has come in the form of (the expected) cards, pictures, presents, and money, but has also included (the unexpected) house cleanings, yard mowings, dinners, groceries, haircuts, and more. A couple of weeks ago, we got the chance to hang out as a family without tubes, IVs, or needles. Just playing in the yard, swinging, and reading books. A very special lady, one who has been with us for some of our most important life events (engagement, wedding, friends, new additions) donated her time and expertise to capture the morning on camera.

I can’t say enough about Rachel Moore. She is a gentle and kind person who brings out the best in the people she photographs. She is easy to work with, smiley and fun, and a phenomenal artist. Thank you, Rachel. Thanks for supporting our family through this difficult time. Thank you for being there at the beginning of Ryan and I as a family unit, and for capturing beautiful moments along the way. And most especially, thank you for giving us pictures of our family of four as WE see it, with smiles and wiggles, laughter and cuddles. I’m so happy we have these beautiful images of us all together to capture this moment in time, regardless of what is on the horizon.

If any of you out there need a wedding photographer or someone to capture a moment in your life, please consider Rachel. She’s the best. The photos in this post are all to her credit.

#ItsJoTime

-CHW

Hey, friends and family, Auntie M here! This past week Josephine, Casey, and Ryan were able to go on a weeklong adventure in Florida through the generosity of Make A Wish and the Give Kids the World resort. My family was able to join them for a few days and it was truly magical! I am still in awe of how much energy and stamina Jo showed throughout the week, but it sure makes my heart happy that she was feeling so great for this adventure!

Casey posted daily updates on Facebook but I have been behind the game! My sincere apologies, as I know many of you wait anxiously for updates like me! I will go back and put her updates and as many pictures as I can here now so everyone can relive the joy they got to experience all week! (I’ll try to backdate each one, so be sure to go back & start from Sunday!)

If you’re not moved by these incredible moments, check your pulse. 💜

-MA

#ItsJoTime We’re home! We crossed everything off our list this morning: we found Jo’s star in the castle (more on that later), took one last ride on the carousel, rode horses (again!), played at the pool until Jo wanted to sleep (at 10 am!), then made one last stop to see a dear friend of mine from way back and his motor sports dealership before leaving Orlando and heading home to collect our Randall. What an amazing trip. Thanks for sharing this journey with us. There will be a more proper update to come as we mentally prepare for Jo’s scans this coming week. Until then, I want to say thank you. To Make-A-Wish, to Give Kids the World, and the the wonderful staff at Disney, Universal, Sea World, Southwest Airlines, and Signature Limousines. You all made this so incredibly special for all of us. And thank you as well to Ryan’s parents for keeping our home, Winnie, and #WreckItRandall together all week. We couldn’t have done it without you. #WishComeTrue

#ItsJoTime I can’t even give you guys a summary of today. Hollywood Studios, thunderstorm, nap, and Epcot all together! It was sunny and hot. It snowed (whoa!!!!!). It rained. We navigated rivers, played with toys, met all of the characters, and had French deserts for dinner. We dashed, splashed, escaped, chased, explored, and finally, slept. We miss our Randall, but will give it our all for one more day tomorrow at the resort. Thank you all for following our journey this week. Jo’s wish totally came true.

#ItsJoTime #UniversalMoments

Today was another excellent adventure. We hugged some minions, rescued Fiona for Shrek, got spooked when Optimus Prime called us a true friend, got up close and personal with some animal actors, rode through the forest with ET, had a Duff beer in Springfield for lunch, battled even more aliens, went on an expedition to find Kong on skull island (twice! Jo loved that one!), escaped from Gringots, rode Hogwarts express to Hogsmeade, got dizzy in a twirling cup, and saw water turn into a movie screen. We’ll start our grand finale with more Disney tomorrow. Hold on to your hats!

#ItsJoTime

Whoa. Guys. Today was productive! Josephine rode a horse for the first time, ate ice cream for breakfast, and then we headed to Sea World! She gave Shamu a hug, fed sea lions, sharks, and sting rays (which tickled when they took the food from you) and met Henry, the screech owl. We followed the life of a penguin and a sea turtle. We met rescued sea life and watched the killer whale show. Of course, Josephine HAD to be in the front row (until she got completely and utterly soaked, then she had a change of heart). 😂 After a wardrobe change, we marveled at underwater worlds and headed out. We ate dinner dockside of a lake, walked through shops and eateries – and Josephine found something she loved just as much as pennies. SMASHING pennies into souvenirs! After four of those (and Mom running out of quarters), we headed back to the resort to ride a train (twice!), get our nails done, get an airbrushed tattoo, and hang her star in the castle. For those of you wondering where we’re staying that we can eat ice cream for breakfast and get our nails done after riding a train, I’ll have to write a whole separate update just on Give Kids the World Village. That will come in time. Until then, Google it and be amazed. We’re only half-way done with this magical wish of a week. More to come.

#ItsJoTime #ItsDisneyTime

Today was another one for the memory books. We toured exotic lands, went on a safari, rode river rapids, flew with dinosaurs, and danced with Chip and Dale. We met Pocahontas, sang in a celebration of Lion King (where I cried again because I could definitely feel the love tonight) and ate dinner on the side of a lagoon. Tired doesn’t even begin to describe how we feel. And really loved. We feel that too.

The safari was a bit bumpy 🤣 Pretty sure the girls thought it was a thrill ride!

#ItsJoTime #ItsDisneyTime

The girls (Josephine and her cousin, my sister’s daughter, Lexie) haven’t made a peep since their heads hit the pillow. The rest of us (myself, my husband, my sister, my brother-in-law) are talking about how today was the best day. Like, not just of Josephine’s life, but maybe of ours too.

We started the day playing peek-a-boo with Mickey Mouse. We got a hug from Goofy, had Mary Poppins grab a wayward toddler and point us all in the right direction (“Spit Spot!”). We ate lunch in the Beast’s Castle and watched as the petals fell off the enchanted rose and the prince transformed. We flew with Dumbo, we stormed a barn, we took a magic carpet ride, we went under the sea. We shot arrows with Merida (after Jo told her she had a brain tumor, we talked about being brave, and I cried. A lot.) We surprised Elena with our expert storytelling. We got a kiss on the cheek from Cinderella. We laughed with Tiana and Rapunzul. We raced each other on a speedway and battled aliens. We escaped a haunted mansion, had a party with pirates, floated a jungle river, and learned how small this world is after all. We stuffed our faces with hotdogs and Dole Whips and white chocolate marshmallow things. We danced with our favorite friends down the street. We got glow-in-the-dark toys, and water fans, and sprayed each other while dancing in the dark.

Josephine sat on her father’s shoulders and whispered “I love you, Dad” while watching fireworks explode in the sky above her head. She gasped with delight and waved to Tinkerbell flying down from the castle. She got to facetime the person who introduced her to Tinkerbell and make sure Tink said “hi” to her, too.

I can’t imagine what the rest of this week has in store, because we feel like we got years worth of joy out of just today. Stay tuned. #ItsJoTime

Girls are ready!!!!

First up – meeting Mickey & friends at the resort!

Magic Kingdom castle shot! Special thanks to Tio (Uncle Eric) for being the photographer!

Lunch at the Beast’s castle – Be Our Guest! The girls loved the magic rose!

Josephine’s Wish is to go to Disney World, but the Make A Wish foundation doesn’t just give you tickets and let you find your own way! They make sure every detail is amazing! First up: limo ride to the airport!

Great seats on the plane….

And an amazing private villa to stay in all week in Florida. So accommodating that even cousin Lexie and her family could stay and play too! First up: pool time!!

Pizza delivered just for Jo! What could be better?!? Now let’s hope these kids get some sleep tonight!

Update #12: The Waiting Game.

I’ve had multiple people text me today saying something like: “just letting you know I’m still thinking about you.” These people are unconnected, don’t know each other, and are from multiple states. I think that this means y’all need an update. 🙂

The days are mostly really good. Josephine is CRUSHING her goals in physical and occupational therapy. She is doing things she used to do, like play at the park, swing in our front yard, give her little brother hugs until he hollers, take baths, cook with me, and sing in the car. She has started being her gregarious self again on our outings, asking people what their name is in the elevator, running to hug a friend coming down the sidewalk, inquisitively examining and questioning each nurse and doctor about their equipment and notes, challenging friends and members of her medical team to Rock’Em Sock’Em Robots. She even picked some toys and activity books out of the enormous amount she’s received as gifts to donate to the Children’s Hospital for our clinic appointment this week. She proudly presented her bag of donations to our child life specialist, Katie, telling her that she wanted to add these to Katie’s closet so other kids could play like she has.

But, she’s still not quite the same. When she wakes up from nap she is inevitably in a horrible temper tantrum where she yells at me for moving my arm incorrectly. She gets tired and then turns off when people are here to visit, retreating to watch a video on her tablet and staying out of the conversation. She uses baby talk and doesn’t add s’s to possessive words. She isn’t eating. At all. Yesterday, she ate half a pickle and a handful of grapes. Today, she just nibbled the edges of a thin mint. She didn’t even finish the whole cookie. And that’s a thin mint, y’all! Do you even KNOW a soul who wouldn’t finish a damn thin mint? She’s just not quite right.

Her medical team is happy. Her weight is steady (thank goodness she’s still drinking plenty of whole milk), her numbers look good, her outputs are excellent, her energy is high. They say everyone who goes through radiation, steroids, chemo, has these same ups and downs. I just can’t put it all together. Why is she rubbing her ears and itching the bottoms of her feet? Why isn’t she eating? Why is she talking like a baby? What is the brain tumor doing in there? Is it shrinking? Is it growing?

She threw up last Friday night. She drank 24 ounces of milk in quick succession, then decided she wanted orange juice. It didn’t end well. As she huddled over the toilet, the memory of the weeks right before her diagnosis came rushing back and knocked me over. I ran out of the bathroom in tears, crumpled on the living room floor in a ball while my husband ran in to clean her up. She was fine after that. The nurses and doctors aren’t worried. We would all throw up if we drank a ton of milk and topped it with citric acid and toothpaste. Gross. But is this connected to the itching feet? The post-nap-wake-up tantrums? Did we go through six weeks of hell just to turn the clock back a few months? What is going to happen this week? Next? We don’t know. We’re waiting.

We’re waiting to see if her appetite returns after weening off the steroids.

We’re waiting to see if her taste buds get back to normal after weeks of radiation to her head and neck.

We’re waiting to hear her pronounce words correctly and return to normal speech patterns.

We’re waiting until her immune system strengthens so she can return to daycare.

We’re waiting for her muscles to build and her confidence to increase so she can walk down stairs by herself.

We’re waiting to take another picture of her brain and see what is going on.

We’re waiting to make a determination about the next step, next treatment, next procedure.

We’re waiting for an absolution that may never come.

We’re making the best of it. We’re being deliberate about scheduling time to play with friends. Ryan and I are working with the phenomenal team at Make-A-Wish to plan a once-in-a-lifetime trip for Josephine. We’re throwing cookie parties with her pediatrician’s clinic staff. We’re making our way through your coloring books, and activity sets, and board games. She’s such good friends with her clinic peeps, we’re even training her to be a good employee of Vandy Children’s. We’re making follow-up appointments with doctors in two, four, six months. We’re trying not to pretend that scheduling something for her that far out isn’t scary for us. We are focusing on her. 100%.

Today, we were able to be together as a family for a quick photo-shoot of the four of us. We were able to capture a moment without needles, IVs, or feeding tubes. We laughed and snuggled and chased Randall around the front yard. We’re waiting for the next thing. We’re focused on her. On us. #ItsJoTime

P.S.: Bonus points to the first person who calls me out for my cheesy Titanic reference. 😉

-CHW