Tuesday, March 31, 2026

Jubilantly Moana Jr.

The month of March has been predictably busy for the Wheelers. Regrettably it hasn't included much skiing due to the unseasonably warm weather, but we are surviving. Mostly I'm just concerned about the lack of water for our reservoirs and the Great Salt Lake. It could be a miserably hot and dry summer.

So what made March so busy? For Annika, it could all be summed up in one word: Moana.

Every year Hillside Middle puts on an epic musical. This year 243 students participated, nearly one half of the student population. For months, they practiced three days a week (4 days for the dancers). As dress rehearsals began, rehearsals became even more frequent, lasting until seven or even eight PM. 

All this for one performance, you ask? Why no. There are TEN performances spanning nine days. It's incredible.

Incredible good or incredible bad? I admit, at first I wasn't sure. I thought it would be too much. Too much time, too much commitment, too much spectacle. After all, this is middle school theater. Why should I be setting multiple alarms to remind me to purchase tickets before they all sell out? It's not The Eras Tour.

Indeed, it was a lot. And for some students it might be too much. But for Annika, it was incredible in a positive sense.  Annika doesn't have a lot of other extracurriculars competing with her time so the musical provided structure, fun, purpose and friendship. I was impressed by how well the director incorporated the ensemble throughout the entire show, with ensemble members singing, dancing and acting in the aisles the whole way through. Even though she never said a line, Annika felt like she was an important part of the show. Indeed, she and all 200 other ensemble members really did make the show sparkle. As their voices rang out in surround sound from every corner of the theater, I couldn't hold back the tears. It was truly moving. I marveled at how far we've come since last year when Annika couldn't perform at Wasatch because she was waiting for a heart.


Warm-ups in the atrium.  Annika is in green.

Here's Annika dancing with her red headpiece. I love how much effort Hillside put into being very respectful of the various Polynesian cultures represented, whether through costuming, language or dance. 

This time Annika is in a black and white dress and yellow lei, fifth from the left in the front row. As you can see, the cast was huge. It took a huge amount of courage for me to let Annika participate knowing that there was a measles outbreak in the community, including at their feeder high school. Scary as it was, I'm glad we took the risk.

Here are some photos of the leads. They truly did an outstanding job! I love that Maui's hair is naturally perfect.

Also, Tomatoa was a riot.


Here's our girl! Too bad she had already changed out of her costume. Actually, I should probably say costumes. The entire ensemble had multiple wardrobe changes for their various roles--villager, chief ancestor, ocean, kakamora and even lava. Like I said, they were integral to the show the whole way through.

Our family was wonderful and came to support Annika en masse. Both sets of grandparents, the Wilhoits, and the Millcreek Wheelers were all there to cheer her on.

Plus, Brooklyn and Talia came up from Provo to support their sister. Yay for family!

As for myself, I volunteered three times and attended the show four times. Let's just say that I know the show really well. The real kudos go to the director and teachers and parents who invested hundreds of hours making this special production happen. I'm amazed by their commitment and ever so grateful for their efforts. Mr. Nate, thank you! (To which Maui responds, You're Welcome.)
Well done, Annika! We look forward to cheering for you again next year.

****

Hey, I just discovered that a professional photographer took pictures of Moana Jr.  All copyright belongs to them, but since the photos were shared with the entire cast and their families, I imagine they can be shared here as well. Enjoy!


































Many thanks to the photographer who captured these brilliant moments. Hillside Middle, fantastic job!  I'll set as many alarms as needed to make sure that I get tickets for next year.

***
Very final addendum.

This is the thank you note that I just sent the director, Mr. Nate. I thought I would include it here.

Mr. Nate,

I know this message is arriving late, but it's taken me some time to process the experience of Moana Jr.  As a brand-new parent to Hillside, I felt pretty overwhelmed when I learned about the degree of commitment required to participate in the school musical. The number of performances and mad rush to purchase tickets seemed crazy, to say the least. I worried about the size of the cast and wondered if our daughter's participation in the ensemble would feel meaningful. I didn't know if she would be able to keep up in school with all the rehearsals, or if she would get too stressed out and give up.

From the perspective of having experienced a Hillside Musical, both as a parent and as a volunteer, I feel like I finally get it. I have so much appreciation for all the work that goes into making this remarkable experience happen. There is so much care and time given to so many details--costumes, concessions, the silent auction, meals, photography, set design, choreography, music, blocking, etc., etc. But while phenomenally impressive, what helped me fall in love with Hillside's musical is that the show was about so much more than spectacle. 

Even with an impossibly large cast, you managed to incorporate the ensemble in meaningful ways from beginning to end. Whether ceremoniously dancing as an ancestor or free-styling as a kakamora, each person in the production was engaged for the entire show. Watching them dart in and out of dressing rooms, you could tell that every student understood the value and importance of their role. 

I love how through example, you taught the importance of honoring and respecting the Polynesian cultures represented. This is ever-so-important in our current time where respect for diversity and inclusion are being diminished. Through this show, I believe you were able to show how much we should cherish and honor the unique heritage and differences of both ourselves and others.  

My favorite part of the show came right at the beginning when all the fans came down and the auditorium filled with color and beautiful voices. Each time I experienced it, I wept.

You see, for our family this show represented our own challenging journey to restore a heart. Last year our daughter Annika was unable to participate in her sixth grade musical. Just a couple weeks before the show, her doctors told her that she needed to wait inpatient for a transplant. In fifth grade she nearly missed the musical as well when her heart stopped and she collapsed in the snow just hours before the performance. (Ironically, she was cast as a ghost...) 

In light of these events, it's no wonder that I got nervous as the show approached this year. Given our daughter's immunocompromised state, we thought about pulling her out when measles broke out at Highland High. Even though it was risky, I'm glad we didn't. For Annika, the show brought so much confidence and joy. Just as Moana ventured out to explore world's unknown, Annika discovered new forms of self-expression, an ability to persevere through challenges, and friendship. And as for those grades, well, I think they were better than they would have been without participation in the musical to dangle as a carrot...

Mr. Nate, while Annika's story may be unique, I think it is also representative of all 240+ students who participated. Moana Jr. made a meaningful impact in all of their lives, and mine. Thank you to you and the enormous support of staff, teachers, admin and parents who made this remarkable production shine.

We are already looking forward to next year.

Gratefully,
Kara and Jason Wheeler

P.S. Mr. Nate's cookies may be the very best sugar cookie I've ever had. Do the talents never end?

Friday, March 27, 2026

Transplant in Numbers

It's hard to believe that it's been more than a year since Annika's heart transplant (15 months and 11 days to be precise.) It's been over three years since we started this heart journey. (39 months and 3 days if you really want to know.)

I guess that sums it up right there. For a gal who honest-to-gosh recently asked an app to calculate my age,  it's pretty ridiculous that I could whip out those time frames without any mental struggle. It kind of feels like I should be able to "get over it" and move on, but the truth is that I still think about Annika's heart constantly. Obsessively. Probably unhealthily.

The heavy truth is that once you've been through such significant medical trauma, it is exceptionally difficult to stop being on high alert. Even when the immediate threat is gone, your body still floods with cortisol. Logically I know Annika is doing remarkably well, but worry cozies up right next to gratitude. My heart beats hope laced with fear.

I am ready to re-claim my identity as more than a medical Mom. As part of my effort to both declutter and de-medicalize our lives, I've decided to scan and then get rid of two enormous binders of insurance statements and bills that we have collected over the past few years. Here's a photo of the first binder. Binder #2 is just as impressive.

I'm digitizing them as part of our family history, but I don't need to keep these massive physical reminders perched beside my bed each night.

Before letting this physical record go, I made a giant spreadsheet and categorized the 491 medical statements. Digging into this record has helped me better understand and appreciate Annika's journey. Honestly, it's helped validate my rather overwhelming feelings as well. No wonder I feel messed up! It's been a lot. I'm giving myself more grace. It's okay if it takes significant time to process and heal.

Most of all, in revisiting these records, I am astonished by Annika's bravery and courage. In a few short years, she has been through more than most of us will endure in a lifetime. Ever resilient, she handles it all with strength and humor. If I need a guide to help me move on, Annika can lead the way.

So with all that, here are the binders in numbers. Between 2022-2025, our warrior Annika faced:

  • 5 days on ECMO
  • 54 days in the hospital
  • 2 Life Flights (Billed as an "Air Ambulance")
  • 6 Emergency Department Visits, including one resuscitation
  • 45 Echocardiograms
  • 19 EKGs (electrocardiograms)
  • 3 MRIs
  • 10 ICD interrogations
  • 3 rounds IV Immunglobulin therapy
  • 3 rounds of injections to treat keloid scarring
  • 2 rounds filgrastim for low neutrophil counts
  • 2 Exercise stress tests
  • 3 Pulmonary Function tests
  • 1 Blood transfusion
  • 46 lab draws (the actual count is higher because that doesn't include many of the inpatient labs) 
  • 22 surgical procedures, including a heart transplant!
As Brooklyn might say, Annika, you're a legend! You've gone from being terrified of lab draws to telling jokes with the phlebotomists. You know how to advocate for yourself (Buzzy please), but you do so with respect. Most importantly, you are taking wonderful care of your special heart. With each appointment and lab you honor the life of your donor. We are proud of you, Cheesecake!

Annika may be legendary, but the medical bills are too. I tallied up all the billed costs and came up with the grand sum of $2,367,380 plus change. Wowzers. Also, just in case you are curious, the largest single bill was for $832,930. This conglomerate bill from Primary Children's included subcharges for sundry services, including "cadaver heart acquisition." Sometimes life feels surreal.

These giant medical binders, meticulously organized by date, helped me grapple with a situation that felt so scary and completely out of my control.  While these binders  may harbor hardship and fear, they shelter even greater feelings of gratitude. The pages are littered with the names of so many caregivers who saved our child. I see the names of our transplant team: Doctors Lal, May, Milligan, Kalb, Chen, Molina, and Etheridge. I discovered that Dr. Ploutz was there on Christmas Day 2022. I have very scattered memories of this time on ECMO and don't recall meeting her, but it means a lot to know she was there. There are beloved ICU doctors like Dr. Goldstein and favorite anesthesiologists like Dr. Christensen. There are those who have helped Annika navigate her journey emotionally, like Dr. Christina Suorsa-Johnson, and our PCPs, Dr. Sharon Schriewer and Dr, Lisa Samson-Fang. Even more humbling are the dozens of names we don't recognize, representing hundreds of people whose names don't appear but who still played a part in saving our daughter. Echo techs, xray techs, phlebotomists, pharmacists, respiratory therapists, music therapists, physical therapists, child life, dietary services, environmental services, advanced practiced providers, not to mention Every. Single. Nurse.  The list goes on an on.

Before signing off, I wanted to break down one category--those 22 surgeries. We have so much gratitude for each surgeon who returned our daughter safely to us.

12/23/2022SkardaECMO Cannulation. This initial crash onto ECMO was a last ditch effort to stabilize Annika's deadly arrhythmias.
12/24/2022RussellECMO Cannulation. The next day they had to add a second venous return into her jugular to help balance out the arterial and venous blood flow.
12/24/2022MartinAtrial Septostomy and Heart Catheterization. Our neighbor MaryHunt Martin performed Annika's first heart cath and put a hole between her atria to balance out the pressures.
12/26/2022SkardaECMO Cannulation. When blood clots started to form in Annika's ECMO circuitry, they decided to replace the tubing so that the clots wouldn't break off and cause a stroke or DVT. In the end, the clots broke off anyway, but fortunately Annika's brain was saved.
12/28/2022BarnhartECMO Decannulation and arterial blood clot removal. Apparently those blood clots headed to her leg since they discovered them during decannulation and fished them out of her femoral artery.
1/3/2023NiuImplantable Cardioverter Defibrillator Placement. Our electrophysiologist Mary Niu placed an ICD to shock Annika's heart if it went into a dangerous arrhythmia.
1/3/2023GrayASD Closure. As Annika's heart pressures stabilized, Dr. Gray went in and surgically repaired the ASD (hole between the atria) that MaryHunt created on Christmas Eve
3/30/2023ParkBronchoscopy, Laryngoscopy and dilatation. Our ENT Dr. Park went in and surgically excised granulation tissue that had built up in Annika's airway following her emergency resuscitations.
4/27/2023ParkFollow up Bronchoscopy. Because the airway is so critical, Dr. Park followed up the initial excision and balloon dilatation with two more bronchoscopies to make sure that the granulation tissue didn't return.
12/15/2023ParkBronchoscopy/Laryngoscopy. This final bronchoscopy gave the all-clear that Annika's airway looked good.
12/15/2023MartinHeart Catheterization. On that same day, MaryHunt performed Annika's second heart cath to see where her heart was trending.
12/15/2023NiuPlace new ICD. While Annika was under anesthesia, Dr. Niu replaced Annika's ICD with a different model that included both atrial and ventricular leads to allow for more natural pacing of the heart. This upgraded ICD would end up saving Annika's life twice.
11/22/2024MartinPlace CardioMEMS device. During her third encounter with Annika's heart, Dr. Martin placed a CardioMEMS device that can track the pressures in Annika's pulmonary arteries in real time, sending transmissions back to the hospital.
12/14/2024GriffithsHeart Transplant (Harvest). This one is so hard. It's also not Annika's surgery, even though we received the bill (and rightfully so.). Dr. Eric Griffiths was the surgeon who removed the heart from Annika's donor and flew it back to Primary Children's. There are no words for our gratitude, just as there are no words for the sorrow.
12/14/2024HobbsHeart Transplant. This is the hopeful side of transplant. Dr. Reilly Hobbs performed Annika's heart transplant and removed her ICD. What do you say to the man who has literally held your child's beating heart in his hands? Yet again, there are no words.
12/17/2024EckhauserMediastinal Washout. Annika met a third transplant surgeon when she suddenly lost huge amounts of blood out of her chest tube several days post surgery. Dr. Eckhauser raced in to open her up for a "chest exploration" right at the ICU bedside as a Massive Transfusion Protocol was called over the hospital speakers.
12/17/2024HobbsMediastinal Washout. Even though he was technically in another surgery, Dr. Hobbs popped in during this emergency procedure to assist. I imagine he was nearly as grateful as we were that all ended well.
12/27/2024BloomHeart Cath and Biopsy--2 weeks--Low levels of Class 1 Antibodies detected.
1/13/2025BloomHeart Cath and Biopsy--4 weeks
1/30/2025BoucekHeart Cath and Biopsy--6 weeks
3/14/2025MartinHeart Cath and Biopsy--12 weeks--Low levels of Class 2 DSA Antibodies detected. Prompted IVIG therapy.
6/11/2025BloomHeart Cath and biopsy--6 months
8/4/2025CohenSmall bowel endoscopy--attempting to understand the cause of Annika's abdominal pain.
12/15/2025MartinHeart Cath and Biopsy--1 year. True confessions--we adjusted the date just so that we could see MaryHunt again. I know she's everyone's favorite, but I feel like we get dibs since we loved her long before we knew how phenomenal her professional skills.

Annika, you really are a rock star! I hope you feel proud of all you have faced with courage and a smile. In the year following your transplant, I counted 99 days where you received some sort of medical care. Miss Annika, that's a lot of appointments and labs! Yet through it all, you rarely complain, especially when promised grapefruit gelato.  (We love the hospital gelato because their grapefruit flavoring is artificial and CYP3 safe. IYKYK.) Annika, you are remarkable! Thanks for sharing your light and special heart with world.

Friday, March 13, 2026

Valentine's Day Plus

I'm nearly caught up on this blog--yippee! I know the only one who really cares, but it's gonna feel great to have Valentine's Day blogged before St. Patty's Day arrived. Heck, I might even make it before Pi day!

For our family, Valentine's Day is pretty synonymous with Cupid's Crazy Cafe. This year was extra fun because we were able to celebrate with Ben, Christy, our friend Melanie, and the Wilhoits at my parents' house. The more the merrier!



Can't you feel the love? By the way, this is the lips tie that my Dad wore the first time he met Jason and family.



Filling out our special menus. Would you like to order snugglin, huggin' or smoochin?


This year we went for a classic Italian theme.  Tortellini soup, lasagna, Italian cookies, garlic bread, kale salad, Italian sodas, roasted veggies, etc. So tasty!

Plus, we had the BEST servers. Eli, Anders and Eila did a stellar job filling all the orders.

Love you all so much! Thanks to everyone for keeping this Valentine tradition alive.

And since I love being caught up on the blog almost as much as I love Valentine's, here are the rest of our photos.

More skiing! Because let's face it--next to God and his family, skiing is Jason's greatest love.


Of course, Eli adores skiing nearly as much. This day was extra fun because Brooklyn and Talia joined us!

Four friendly Wilhoits flying on a lift.




From left to right: Jason, Brooklyn, Kara, Eli, and Ben. I love how Jason's hunched over to better fit in the line-up!



Eli, Jason and Ben braved the crowds to make it up to Brighton on the best powder day of the season. They ended up having to hike more than a mile to get parking, but they assured me it was well-worth it!




As for me, this was my golden ski day. Joy!

Of course, the blue bird day I spent skiing Snowbird by myself was pretty epic as well. Great snow and no crowds. Only thing that would have made it better would be family or a friend!

But hey, plenty of family here! Thanks for skiing with us, Wilhoits. Hanging with you is so much fun!

Of course, the only way to get great skiing is to get great snow.  We had an epic mini-blizzard where the snow fell SO hard and fast but only for a couple hours. Per Murphy's law, Annika felt sick and called for a ride home right during this interval. It took me more than an hour to make the 12 minute drive to her school. Cars were sliding off the road everywhere. I passed a couple dozen fender benders and watched three or four happen in real time. Gotta say--I've never felt so grateful for our snow tires!

Safe at home, here's Annika trudging in the door.


Gotta admit, snow looks pretty good on our home.  Too bad today was a high of 66 with even warmer weather predicted next week.

 
As sad as I am to see ski season end too soon, I can't complain too much. After all, my heart's love is hiking. Here are some favorite pictures from some of our recent adventures. Most of these were taken in the Foothills near our home.



These photos come from the Living Room hike up near the Natural History Museum. This steep jaunt is perfectly situated for a quick hike on the way home from school drop off.



Just a girl and her dog.

Except for when it's bathtime--then Zion is all Eli's. Muchisimas gracias, mi hijo! You are a gem. We love you!