Next Level Hard

It's been a long while since I last blogged--my apologies.  In truth, it's been a tough summer.  We'll get back to the cheery posts soon.  But first, I wanted to take a moment to be real.

For a long while now, Annika has felt miserable.  She's experienced nausea, abdominal pain and mouth sores off and on for several months.  While the pain hasn't been constant, there have been very few days where she hasn't felt sick for a substantial part of the day.  When I look back on Summer 2025, the image I will remember most is that of Annika curled in a ball and moaning on the couch.

There have been so many heartbreaking moments.  Annika counting down the days until Dungeons and Dragons at the library, only to call for a ride home early.  Annie curling up with her head in my lap instead of running around with her best friends at the zoo.  Getting picked up from overnight troop camp after an hour instead of getting to horseback ride and do the high ropes course.  Missing out on playing with her cousins.  Feeling too sick to walk Zion.  Leaving the table meal after meal with her plate untouched because it hurt too much to eat.

I generally disapprove of crass language, the most truthful way to sum it up is to say that it really sucked.  

I have often fought back tears, wondering whether we made a terrible mistake in proceeding with transplant. Pre-transplant Annika's activity was limited and she experienced pain when she exercised.  But in recent months she's been even more limited and felt sick almost all the time.   The transplant medications are absolutely critical, but at times it felt like we were poisoning our daughter.  

I think the only reason I can share all this is because we've finally found a medication that helps.  We've run a gazillion tests and still don't know why Annika is experiencing so much abdominal pain.  However, between an aggressive regimen of cyproheptadine for her stomach and dexamethasone/triamcinolone/lidocaine for the mouth sores, she is finally functioning again.  Watching Annika reengage with the world has brought so much hope to our family.  Two weeks ago, we questioned whether she could make it through a full-day of school.  Now we are all excited for her to begin seventh grade with her peers.

In coming posts, I plan to capture all the happy that happened this summer despite Annika's health challenges. But before I do, here are some photos of her struggle.  Remembering the hard times makes the joy of recovery particularly sweet.

Here's Annie following from her six-month cath. Because they accessed her heart through her groin, she had many hours of "flat time" followed by a migraine.  Poor kid.

One evening she felt up for a scooter ride up City Creek Canyon with Zion...

...but soon found her stomach hurt too much to continue.

Eventually she was so miserable that we took her to the pediatrician, who reached out to Annika's heart team.  By the end of the day the transplant team told us we needed to report to Primary Children's Emergency Department.  Of course, by this time Annika was actually feeling much better so we stopped off for some grapefruit gelato from the outpatient side before checking in.

I'm sure the emergency physicians were confused by this chipper tween coming in to get checked out for abdominal pain that wasn't currently present.  In the end, the x-ray and bloodwork didn't show much beyond some elevated inflammatory markers.

After a few hours the tummy pain came back.  Dang it.

The nausea and abdominal pain were no fun, but the mouth sores were torturous.  Sadly, the mouth sores are a known side effect of everolimus, one of her anti-rejection meds.  We could switch her back to myfortic, but everolimus offers some long-term protection for the kidneys and coronary arteries.  These are such tough decisions!

It didn't help that one of her prescriptions to treat them was on long-term backorder at the pharmacy.  We finally located some by calling around, but by that point the sores were already terrible.

Here's Annika gathering up her stuffies after calling for a ride home from camp.  (Thanks for the rescue, NomiAnn and Papa Kay.)  I was a parent volunteer and still had to stay with the troop, but it was pretty sad to be there without her.

Here she is feeling under the weather at an outdoor concert.  By this point, we were all really worried.  Annika's physical health was really starting to impact her mental health as well.  After years of enjoying Annika's exuberance, the world felt wrong with Annie depressed.

Desperate, we finally pulled some strings with Uncle Justin and got Annika into the GI clinic at Primary's.  We met with a doctor on Friday and scheduled her for an upper EGD scope (esophagogastroduodenoscopy) on Monday.

A little scary, but she did it.  She was quite happy that she could have flavored gas (tutti frutti) before getting her IV placed.  Unlike during other procedures, I was invited into the room to hold her hand as she drifted off to sleep.  I got so emotional watching my little girl go under anesthesia.  Even though I knew this was a safe and quick operation, I also understood that they would soon be shoving a camera down her throat and snipping tiny pieces from her esophagus, stomach, and duodenum. I felt overwhelmed by how much this child has been through.  She's a trooper, for sure.

When Annika's procedure was over, they called us into a "consult room" and I totally flipped out.  In my mind, you only get called into a consult room if the news is BAD.  (Like when they took Jason and I into a conference room to tell us Annika might need a transplant.)  But apparently this is just standard protocol for the Children's Procedural Center.  I was super relieved to learn that nothing major was going on.  However, in a bizarre sort way I felt equally disheartened when they told us that everything looked "stone cold normal."

Because, this.  Whether her gut looks great or not, something was obviously wrong.

I wish we had answers.  We don't.  But we have an effective treatment, and I'm going to take that as a win.  Life is happy again.  Plus, Talia took one for the team and told Annika that she could douse her with water if it would make it feel her feel better.  It definitely did.

Turn around is fair play.  Sure love this family!  And so glad you're feeling better, Annie Mae.  We love you!

P.S. In those moments when I question the necessity of Annika's transplant, it's important to remember that the biggest concern was that her heart would stop completely.  The road we are on may be challenging, but it's better than the alternative.  God pretty much sent a personal telegram that we needed to do this,  As always, we are so grateful to Annika's donor and all organ donors for making life possible.