Update #11: Dig a little deeper.

#ItsJoTime

Well, the euphoria of the last radiation treatment and the removal of Josephine’s needles and tubes lasted about 36 hours. Just when we think we’ve got this. We find out we need to dig a little deeper.

Friday was wonderful. Sarah Swyers Parker was not only an expert videographer for the final walk to treatment, but graciously picked up her daughter (and one of Josephine’s best friends), Eleanor from daycare to have a celebratory brunch with us! Josephine loved it. After a nice nap, we then picked up Randall from school early (and dropped off some flowers that Josephine had picked out for her teachers) and enjoyed a couple of hours playing at the splash pad at the park. We had a few friends visit to drop off dinner and Josephine was a gem – telling jokes, laughing, eating fried chicken and macaroni and cheese.

Saturday was a bit slower, the whole family headed over to Ryan’s parents (Granddad and Grandmom)’s house and we enjoyed a family lunch out. In the afternoon, we stopped by to see some other friends as well. By the time we got home and undressed the kids for bath, I noticed some hives on Josephine. Since her temp was normal and she didn’t seem too bothered, I gave her some Benadryl and put her to bed. Around midnight she woke up with a fever. Since she just finished chemo and radiation and was likely to be immunocompromised, we had to pick her up and take her to the Emergency Room. So, we headed back to the Children’s Hospital just one day after we left her last treatment.

Let me take a second to say thank you, again, to the wonderful Children’s team. I had a call from the on-call Fellow before I got to the highway and by the time we walked in to the ER, they said “You must be Josephine, we’ve been expecting you.” We had her bracelet, stickers, and the charge nurse taking us to our room before the security guard had finished looking through our bags. They had her port accessed, blood drawn, antibiotics received, and vitals taken in the first 10 minutes. In less than two hours they had determined that this was most likely a viral infection, Josephine’s immune system and blood cells were looking good, and she didn’t need to be admitted. She was given another dose of Benadryl, de-accessed, and headed home in just under two hours. We crawled back in our beds to snuggle three hours after she had initially woken up with the temperature. Wow. It was so smooth, and of course, the doctors and nurses were phenomenal.

I will also take a second to talk about how awesome our daughter is. Ryan and I were sure, absolutely sure, that given her fever they would admit her. We raced around the house at midnight packing hospital bags for both me and Josephine. When Ryan asked if there was anything else Josephine needed, he thought she would answer a stuffed animal. Instead, she said she needed her numbing cream for her chest, because she was sure they would put a needle in her port at the hospital. Ryan and I stood there stunned. She was right. And we hadn’t even thought of it. Our three year old was keeping US straight. I applied the cream. We got on our way without a fuss from Jo.

Such is the life of being a cancer family. Scary moments in the middle of the night. Trips to the ER. Overanalyzing every sniffle and sneeze. Why did I take her to the splash pad? Why did we let her eat those beautiful tomatoes out of Adrienne Day Useted’s bountiful garden before washing them? Did she nap enough? Did she drink enough? Did we, for just a day, treat her a little too much like she didn’t have a brain tumor? Is that what we’re supposed to do? Or not? Does anyone even know what we’re supposed to do? Do we know what to do? Way down deep?

Josephine and Ryan were watching a bit of “The Princess and the Frog” this evening. Mama Odie told me us we needed to dig a little deeper. We will, keep digging, because #ItsJoTime.

“You gotta dig a little deeper

For you it’s gonna be tough

You gotta dig a little deeper

You ain’t dug this far enough

Dig down deep inside yourself

You’ll found out what you need

Blue skies and sunshine

Guaranteed

Open up the window

Let in the light, dearie

Blue skies and sunshine

Blue skies and sunshine

Blue skies and sunshine

Guaranteed”

-CHW

Update #10: The Final Countdown

#ItsJoTime

Today we colored in the penultimate square in our tracker, a picture Josephine has come to love. When I first colored it, on my hands and knees in her hospital room, she yelled at me the whole time. She refused to participate daily when I colored in her progress, and would roll her eyes when I showed it to other people. Now that we’re at home, she’s almost completely off of the steroids, and the representation of her journey is displayed prominently in our kitchen for all of her visitors to see, she has much more pride. She’s been obsessively reminding me to color in the clovers and bricks nightly and today, didn’t even wait for lunch to be over before she wanted her next-to-last radiation marked and celebrated.

Tomorrow, we will march into the radiation lab blasting “The Final Countdown” on a bluetooth speaker, wearing Easter formal wear, Mardi Gras beads, red lipstick, and blowing bubbles. Tomorrow, we will ring the big bell. Tomorrow, we will color in the final brick. A journey six weeks, 42 doses of chemo, and 31 radiation treatments in the making. Tomorrow, we will stop the tiny amount of steroids we’ve weaned her down to. We’ll stop the antacid that accompanies it. We’ll remove the access needle from her port. We’ll remove her NG tube. She’ll wake up from anesthesia as normal of a kid as she has been since June 6, 2018.

Exciting, right? A day we’ve looked forward to since June 14. So, why am I scared shitless? Why is my heart pounding loud and quick in my chest as I write this update? Why am I having a hard time thinking about what we’re going to do AFTER tomorrow?

I am, personally, very good at working a plan. I’m very good at planning. I’m good at winning games I know the rules to. And up to today, that’s what I’ve been doing. We had a game plan: 42 doses of chemo and 31 radiation treatments. Ryan, Josephine, and I have worked out how to be the BEST patient. We’ve gotten it down to a science. Now the game plan is done. We’re done with our “to do” list. Now, the only thing left is “wait.” I’m not good at that. As tomorrow has gotten closer over the past week, I’ve started to feel more and more nervous. Nervous that when we stop treatment, her symptoms will return. Nervous that when we pull the NG tube, she won’t get the nutrition and hydration she needs. Nervous that we’ve already played our ace and if her scans at the end of August show not-much-progress, we might be out of face cards. Will we be able to craft more plays at the end of this play book? We aren’t sure.

Besides telling all of you this, I don’t know what else to do. If you pray, we still need your prayers. If you meditate, we need your focus. If you make funny videos, we still need you to send those our way. And, if you challenge people to lip-sync battles, BRING. IT. ON. (Josephine is almost back to game shape in the singing department.)

We can’t say enough about our wonderful team at Vanderbilt Children’s. The nurses, anesthesiologists, radiation oncologists, care partners, volunteers, and pediatricians who help us daily are phenomenal. I trust them completely because I see in their eyes how much they love our Josephine. She truly seems like a different kid than the first few days of these treatments. This week, she’s WALKED back to the treatment room every day, and one day she even walked all the way from the car to the radiation lab. Most of the time, she’s deep in conversation with her anesthesiologist or nurse and doesn’t need Ryan or I until it’s time to get down to business with the anesthesia. While the tantrums haven’t completely disappeared, they are shorter and farther between. She has had enough energy to sing in the music studio, go to the art museum with friends, pick out flowers for her nurses at the wholesale florist, and even requested a trip to the park today. We’ll be continuing physical, occupational, and speech therapy for the next few weeks and are looking forward to hearing the results of Jo’s next scans at her next clinic appointment the first week of September.

So, if you hear some loud music, ringing bells, and whoops and hollers tomorrow morning, it’s us. We’ll be rocking out the last of this to-do list and then turning to you guys to get us through the next few weeks. Its the Final Countdown and #ItsJoTime.

-CHW

Update #9: True Grit.

#ItsJoTime

Josephine is doing really well. This week, we finally got back to WaffleHouse (a weekend regular pre-diagnosis), Josephine got a manicure and pedicure for the first time ever (thanks, Grandmom). Josephine played new board games with me and Randall and enjoyed several visits from friends. She met her first goal in physical therapy and is walking much more. We’ve gotten back to panties (from the pull-ups that we had to use in the hospital) and I even saw her have enough strength to pull her panties and shorts up herself this morning. Her wake-ups from anesthesia are getting so much better, and she even told me she “loved” radiation treatment this week. That is probably because we’ve worked at it. We’ve developed a routine, we’ve tried again when things didn’t work out, we made friends with the nurses, care partners, transportation specialists, anesthesiologists, and CRNAs. (We even had a luau with Tresa Sadnick.) We are working it. I wanted to tell you all this: Josephine is a really, really, hard worker. She is fighting. She is trying. And when something doesn’t work out, she tries again. This isn’t magic. She wasn’t born with something special that helps her fight a brain tumor. Yes, she has grit. But that is something we all can work on.

Grit. True grit. I feel like there are only a couple of things getting us (and for this post, I’ll speak for myself), getting me through this. One is grit – perseverance, dedication, grind. Two is faith – belief in the best of people, the understanding that Jo is walking down her road just as she is supposed to. Three is all of you (including my amazing husband and partner in everything, grass-skirt wearing Ryan Wrenn). Just when I think there is a challenge I don’t have the answer to, one of you comes up with a solution (see Update #8 if you don’t remember). Jo has these same things. She is benefiting from all of your support. She is also developing her grit.

I owe much of my grit to my father: Jim Haugner (Jo’s “Papa”, Jim Haug). He taught me a lot, from dividing fractions, to changing a tire, to the order of the planets, to the notes in a major scale. He also taught me three important lessons that were key to developing my (and by translation, Josephine’s) grit. (1) You can ALWAYS paddle faster than the river. (2) Accelerate THROUGH the curve. (3) Use your nervous energy to your advantage.

1. You can ALWAYS paddle faster than the river. Have you ever canoed? Kayaked? Taken a boat over class 3 rapids? Relied on your own strength to push through? Even if you haven’t, you can still get this lesson. The river will always be moving. It won’t stop. Picking up your paddle or dropping it down won’t slow the water. Pulling to the edge and grabbing a low-hanging branch won’t slow the water down either (and is a good way to get a snake in your boat). Trying to turn around? Nope. That water is going to keep moving, whether you’re ready to go over the drop, or turn the corner, or not. Your boat is going to keep moving with the water. Your boat is in the water. You are in the boat. But here’s the deal. If you paddle, you push yourself forward through the water. If you paddle, you can steer. If you paddle, you control your path. If you paddle, you are pushing IN ADDITION to the current. Any paddling puts you ahead of the current you’re already in. So, don’t act scared. Don’t grab a branch or put down your paddle, because the water will keep going. Get your arms up, get your game face on, and paddle through. Then, you’ll be in control of where the boat takes you. Sure, the rapids might be bumpy, but you’ll be the one steering. I take great comfort in knowing I can paddle faster than the river. Doesn’t mean I’m not scared of the rapids. Doesn’t mean I don’t feel adrenaline or trepidation about what’s around the next bend or down the next drop. But I do know that if I keep my game face on, keep my arms up and moving, I can push through. Josephine knows this too. She doesn’t know why she has a brain tumor, but she knows she has to go to treatment, so she does. She doesn’t know what will happen if the tumor grows (she asked me that this week). But she does know that if she stops doing radiation, if she stops doing chemo, if she stops pushing herself in physical and occupational therapy, then she could get sick again. So, she gets her arms up. She pushes through.

2. Accelerate THROUGH the curve. This lesson I learned in a red 1985 Ford F-150 pickup truck. Not unlike lesson #1, a road is like a river. You have a map, a place you know you’re going, but you don’t know every twist and turn. You don’t know exactly how fast to go or how dark it might get. Sometimes, you hit a moment where you lose control. Maybe its a tight curve. Maybe its a black icy patch. The trick here is to keep in control. How do you do that? You set yourself up for success as best you can (break to slow before big curves or icy bridges), but when you’re in it, in that curve, in that icy patch, you dig in. To gain control, you accelerate THROUGH the curve. You’re sliding? You steer INTO the slide. If you lose your head, let go, freak out, hit the breaks, you’re giving up the power you do have. You hit the gas, you bear down, you get more traction, more force supporting you, more control. Your wheels are sliding? Turn into the slide, not away from it. Face it head on, take away its power. Get back the control. Are we in control of this journey? No. We don’t know how tight the curves are, the condition of the roadway. But we do know that when presented with an obstacle, we don’t give up, we don’t let go. We bear down, we steer into it, we accelerate through it. Jo needs radiation? Great. She’s going to be the best damn patient you’ve ever seen. We have issues? We won’t stop or slow down. We’ll change what we need to to support her and we’ll keep pushing. Sure, we’ll set ourselves up for success as best we can for the obstacles we know about, but we won’t let the rest throw us off course.

3. Use your nervous energy to your advantage. You all know about Fight or Flight. Presented with something threatening, you get a big discharge from your sympathetic nervous system, adrenaline and hormones to get you stronger, faster. Now, sometimes when people are scared or nervous, they don’t face the thing. They run away. This, my dad taught me, was a waste of all of that amazing new energy. Backstage at one of my first live performances in front of an audience of hundreds, I told my dad my body felt weird, tingly, buzzing. How amazing to have that extra energy, he gushed. Great! Use it. Sing louder, be bolder, move with more strength. Up against a new or scary thing, you can choose to use your energy to run the other direction, or you can use it to make yourself an even better version of you. You can be stronger. You can be bolder. The new energy isn’t infallible. It’s not a security shield or a protection spell. You have to harness it. But how powerful it is to use it to be better, kinder, more inspiring version of yourself. We have had a lot of scary situations in the past few weeks. I’ve felt that tingly, buzzing feeling a lot. The results of the MRI, watching Jo struggle to breath, watching the heart rate change on the monitor, the oxygen level drop, or watching a nurse struggle to get blood and worry Jo will need to get stuck again. You get a jolt. A shot of adrenaline. You can lash out at the care partners, run away, or you can harness it. Breath deeply. Use the energy to focus, ask questions, be the strength that someone else doesn’t have. This is what we’ve tried to do for Jo, and with Jo, and taught Jo to do for herself. We can’t protect her from all the scary things. She will need to get poked. She will need to get an EKG. She will need to get an x-ray. But we can teach her its ok to be scared. It’s ok for you to be nervous. Use it. Use the energy to be strong. Be bold. Be still and steadfast. Its every Monday morning when we access her port. It’s every time we ask her to do something she’s unsure about in physical therapy. It’s every test, procedure, and unknown result. She is learning what it means to be brave – brave doesn’t mean the absence of fear. It means persevering in the face of it.

So, this is how we’re getting through this. This is how Jo is practicing her grit daily. How I am practicing my grit daily. How we are persevering, trying again, fighting and grinding. We’re having fun, too. We’re putting on lipstick. We’re singing in the car to Billy Joel and Beyonce and Taylor Swift and Willie Nelson. We found out Josephine got accepted as a “Make a Wish” kid (stay tuned for more info as we have it). And, when we hit a slide, we steer into it. When we get a tantrum, we accelerate through it. When she is scared she’s getting poked with a needle, we calmly explain it’s ok to be scared. Use the energy. Bear down. Face it. Paddle faster. We got this. #ItsJoTime

-CHW

This “Uptown Girl” was finally (after five long weeks of being cranky) singing along with Billy Joel today in the car to pick up #WreckItRandall. Yes!

#ItsJoTime https://t.co/yZtht9QUJ0

-CHW

You know what the farmer said to the dog after his tail got run over by a train…

It won’t be long now!

#ItsJoTime

(#MyArkansasIsShowing)

-CHW

Today’s PT and OT sponsored by @WaffleHouse – walking on just-mopped floors, mustering the hand strength to work the syrup, and cutting eggs! This is how you do it, right?! #ItsJoTime https://t.co/XAgnfkQZC4

-CHW

Sharing a note from one of our oldest family friends, Kristin Mitchell Dishongh, who went to visit The Wrenns last week! Looks like she and her sweet kiddos brought lots of smiles for Casey and Jo! It’s amazing to see everyone looking so good!! 🙌🏼

What a blessing to have such wonderful friends continuing to enrich our lives! -MA

“Ended a great week of vacation visiting a dear friend. Her 3 year old daughter, Josephine, was recently diagnosed with a brain tumor. Please join me in prayer for this precious family. You can follow her story at https://itsjotime.com We ❤️ you Josephine! #itsjotime”

What a Saturday morning should be: beer-batter-biscuit-baking with my sous-chef (and her assistant)

A few highlights from Jo’s weekend…

Zoo date with Eleanor on Saturday (July 7)

Pool time with the Pischls and Parkers

Update #8: So, How’s Jo?

#ItsJoTime

I have gotten a lot of people telling me they love these updates (thank you!), but I’ve also had a lot of people still asking me, “I read your updates, but I’m still wondering, how’s Jo? Like, really, how is she doing?”

This is a tough one to answer, because it changes by the moment. I think my thesis should be: she’s not the same, but she’s improving. This week, we have seen some pretty amazing things, and some, well, other things.

1. Her wake-ups from anesthesia every morning are now going fantastically. Instead of wailing in an hour-long temper tantrum, she now just calmly sits up, holds out her arms for her father to pick her up, sits down in her stroller, and tells us what she wants to eat. No muss. No fuss. This makes waiting while she’s under so much easier on us.

2. We’ve cut down own the steroids over the past week. Her mood is, baseline, much better. Many less tantrums and they are shorter when they do happen. Of course, they are still mostly aimed at me. 😞

3. She’s starting to lose her hair at the back of her neck, at the base of her scalp. This has only been happening the past couple of days, but it is a potential side effect of both the radiation and the chemo. She is, remarkably, pretty OK about it, just chuckling and rolling her eyes when one of us pulls the shedding clumps off her back.

4. We’ve been drawing her blood multiple times a week to check the counts of her blood cells and infection-fighting capabilities. While we have seen some slight drops, her numbers are holding pretty steady and the doctors seem pleased.

5. Since her diagnoses and her voice changes, she has refused to sing, or let me sing, or even let us listen to music. Finally, this week, coming hope from treatment in the Tennessee heat, she asked to hear “Hot, Hot, Hot.” Not only was this nice because we got to hear some music, but it was also her making a joke, which I loved!

6. She has felt good enough to join me in a trip to Kroger, bake a chocolate cake (from scratch), head to a few friends’ houses, and even join us to pick up Randall from school and see her friends and teachers. And whether its our favorite butcher that we haven’t seen for weeks, or other moms in the daycare parking lot, she calmly explains where she’s been: “I’ve been in the hospital, I have a brain tumor” as if she was on vacation or something.

7. She’s tired and not moving around like herself. She only walks sporadically, and mainly relies on one of us to help her around. While this has been improving the last few days, it is still difficult when she asks to be carried everywhere.

8. Home has been such a good thing for us. Things that she used to fight us on in the hospital (teeth brushing, early bedtime, walking) she has been doing without argument because it is just part of the expected routine. This means we’re doing stuff that isn’t just less of a fight, but is also more healthy for her.

9. Since her diagnoses and hospital stay, she has been less, how do I put this, engaged. Many of the books and crafts you all sent her during her hospital stay, she wanted to wait until we got home to play with. Since we’ve been home, she’s cooked with me, Melissa Pischl, and Sarah Swyers Parker, read books with me before bed, and today even asked to play with play-doh (thanks, Katherine Jordan) and open some of those kinder surprise things. (Side note, what are those things and why do the kiddos love them so much?!) Also, one morning this week she insisted on putting on blue eye shadow before we went to treatment. Hehe! One thing that we especially fought in the hospital was changing her clothes – she never wanted to do it! Thanks to a new nightgown from a dear friend (thanks, Tess Halbrooks!), she finally changed into PJs before bed this week.

10. She stopped taking any liquids by mouth while we were in the hospital. For the first week or two after her diagnoses, her swallowing worsened, but it is now improving. Today, thanks to a new cup she was super excited about (thank you, Maggie MacPhee Holt!), she drank 2 full glasses of juice (albeit thickened). This made my heart SO happy, because it means we may be able to ween off the feeding tube in the weeks to come.

11. We have been very thankful for the iTunes/Amazon gift cards (thanks, Cathy Leigh Day and others!) – we’ve got to show Jo some classics (like Peter Pan and Dumbo) as well as newer favorites (she LOVED Frog Princess). She especially loves her new tablet (thanks West TN CTE Directors!) and takes it with her to wait for doctors appointments and treatments.

12. She LOVES filling up that piggy bank of hers. All of the coins you have sent (too many people here to tag!) have kept us busy! We haven’t finished with them yet!

13. Despite all of this, she continues to make NEW friends. She shares cookies with her amazing rad-onc nurses, has befriended (and tells jokes with) all five pediatric anesthesiologists, told the new outpatient speech pathologist she was cool enough to call her “Jo”, and even James stopped in to see us this week to check on her (let’s be honest, to check on me and Ryan Wrenn).

So, overall, there are encouraging signs. The radiation oncologist was so pleased with her mood, temperament, and progress on neurological symptoms that he has suggested we cut down the number of radiation treatments from 33 to 31. We have more evaluations and clinic visits next week, so we hope to have more detailed info. But in this update, I hope you guys can see what I can, that it takes a village. What Ryan and I haven’t been able to do by ourselves (get her in PJs, get her to drink a glass of juice, get her to play a game or read a book), you guys have done with your support, prayers, well wishes, and care packages. We will never be able to thank you enough for holding us up and pushing us forward. I’m normally really bad at asking for help, but the past month has given me lots of practice. I’ll ask you to keep it coming. Keep the prayers going up, keep the funny joke videos coming in, keep your thoughtful ideas for items Jo might love working. She’s got a brain tumor, and she’s not herself, but she’s doing OK. It’s going to take all of us to get her through this. #ItsJoTime

-CHW

A couple sweet pictures…

With Aunt Sarah (June 29th)

With our ‘cousins’ the Parker and Pischl kiddos (July 1)

In the room awaiting our gal to be over the half-way hump with treatments after today! She is doing soooo good, we’re down to half of the steroids. Loving my new mug from Kristen Marchiando! Thank you! #ItsJoTime

-CHW

Update #7: Home, James! (Now, we wait.)

#ItsJoTime

This is James. We spent every morning walking with James. He would arrive at the door of Josephine’s hospital room at 8:15 a.m. and patiently wait as we got a cranky, half-asleep toddler out of her bed and into her father’s lap on a wheel chair bound for the radiation lab on the other side of the Vanderbilt medical complex. We would walk down our hall of 6A, out of the myelosuppression unit, down the quacking duck elevator used for pediatric patient transports, through the neonatal intensive care unit, across a long, bending sky bridge into the adult hospital, down another set of elevators, and into the basement where they keep the, you know, big machines used for shooting radiation into my child’s brain.

James would drive us the whole way, stopping at every door to open it with his badge. James would also drive us back sometimes, shaking his head quietly and walking away without the wheelchair he had brought to us if Josephine refused to leave her father’s lap and demanded pizza. Or icecream. Or a warm blanket. Or just more snuggles. James was steadfast. It didn’t matter if Jo was screaming because we left her Sophie, or her iPad, or something else in the room. It didn’t matter if she wanted to take the small wheelchair that day, or the wagon, or be carried in someone’s arms. James still walked us calmly and deliberately to our appointment, never once flinching at her hollers or her screams. It was only six or eight minutes here and six or eight minutes there, but I learned James loved the hot dog stand by my house. Learned he didn’t discriminate with good music and loved seeing shows at the venue down the street. Learned his calm nature I could count on as a model for me when I just didn’t know how to act. When I apologized for an outburst, he would smile and say “no bother, if it wasn’t her, it would be someone else.” And he was right. On Friday, I got to say the words I had been thinking about for weeks, “HOME, JAMES!”

James was just one part of our squad. Our tribe. Our village. Others included Hannah, Leslie (Les), and Tresa, the best rad-onc nurse team ever. Anesthesiologists that tell jokes about Disney movie characters as they push propofol into Jo’s IV so she falls asleep chuckling. Nurses that would eat whatever cookies Josephine shoved at them, regardless of how recently she had washed her hands. Care partners that would bathe Josephine on the floor if she refused to get in the bathtub. Doctors that would allow her to shoot them with saline syringes while conducting a neurological exam. Fellows that come examine her (or answer their cell phones) late at night or on the weekends. Katelyn, the world’s most patient, thoughtful, ingenious speech pathologist. Literally, this gal used a needle to inject barium into a Cheeto for God’s sake (right before she dipped bacon in barium) to get Josephine a successful swallow study in order for us to come home. Physical therapists like Allie and Kat who would gut it out when Josephine wasn’t cooperating. Child psychologists who were ok being MY psychologists. Nutritionists who would walk patiently behind Josephine’s wheelchair for three laps around 6A to talk about her feeding patterns and needs. And hundreds of friends, teachers, and classmates who sent videos, jokes, cards, pennies, pennies, more pennies, books, stickers, and more stickers to help Josephine through.

While I am so glad to finally sleep in my own bed and eat dinner with all four members of my family in one room, it was difficult to leave the hospital. It was difficult to turn off the beeping monitors that let me know that my daughter had enough oxygen to keep her brain working. It was difficult to leave a place where I knew if I needed someone else to step in the room so I could take a second to breathe through it, they were there. Now it’s just Ryan and I (and the spiders), listening intently to her loud, snoring breath on the baby monitor. Watching intently as she takes every bite to make sure she doesn’t aspirate it. We are responsible for starting the feeding tube. We are responsible for giving her all of her medications. And instead of James, we’re responsible for taking her down the elevators to her radiation appointments.

The plan is to be home. The plan is to slowly ween her off the steroids as her body acclimates to the treatments. The plan is for us (not James) to drive her to radiation treatments every morning, Monday-Friday. The plan is to wait until several weeks after radiation and chemo are done to take another picture and see if the tumor is responding. The plan is to wait.

So, since we’re waiting, we’re really, really thankful for all of the books, and stickers, and coloring, and painting, and arts and crafts you’ve sent us. We’re thankful our family is together. We’re thankful we are being held up (and held together) by your prayers and well wishes. We’re so thankful for the amazing dinners you are bringing us. And we are completely in awe of each of you. Our squad. Our tribe. Our warriors. And we appreciate how you model how to live for us. How you show charity and love for us by serving us, and serving each other. Like James. We are learning to slow down, breathe, and know that when something seems hard, we can do it. We can do this. #ItsJoTime

-CHW