Over the past year, Alena, our 12-year-old daughter, has continued to smile, joke, and laugh through circumstances that would challenge even many adults. Every day, she takes multiple oral medications and lives with a 24-hour continuous subcutaneous medication infusion, that comes with its own set of side effects, as she works to reverse the damage caused by pulmonary arterial hypertension (PAH) (enlarged heart and right ventricle heart failure) and manage the symptoms of this disease. Her strength, resilience, and ability to find joy, even on these hard days, continues to inspire.
Since being diagnosed with pulmonary arterial hypertension (PAH) last summer, our lives have revolved around medications, specialists, procedures, and trips to specialists as we work to reverse the damage the disease has caused, manage the symptoms she lives with every day and monitor her progress.
We have been incredibly blessed by the love, prayers, encouragement, and financial support so many of you have already given our family. There aren't enough words to express how grateful we are. Every donation, message, and prayer has helped carry us through some of our hardest days, and we will never forget the kindness you've shown us.
In just a couple of weeks, we'll be making another trip to Salt Lake City for some of her most important appointments yet. She is scheduled for a cardiac MRI and a heart catheterization (Cath Lab), which will help her medical team evaluate how her heart and lungs are responding to treatment and determine the next steps in her care.
This isn't a trip she's looking forward to. Salt Lake City holds some very difficult memories for her. Nearly a year ago, she was life-flighted there during the scariest time of our lives. She spent three weeks away from home while an incredible team of doctors worked to stabilize her and develop a treatment plan. As grateful as we are for the care she received, returning brings back those frightening memories. We're doing our best to encourage her bravery and remind her that this trip is about checking on the progress she's made—not reliving the worst days.
As much as I hate asking for help again, the reality is that the travel expenses continue to add up. Between fuel, car rental, lodging, meals, and time away from work, each trip (on top of the medical bills that follow) places financial strain on our family.
If you're in a position to help, no matter the amount, we would be deeply grateful. And if giving isn't possible right now, we would appreciate your prayers for Alena’s courage, for safe travels, for confirmation that everything is headed in the right direction, for the guidance of her physicians. And would be so thankful if you shared our fundraiser with others.
Thank you for supporting Alena and our family. Because of your generosity, we've been able to focus on what matters most—getting her the care she needs and giving her every opportunity to keep fighting this disease.
update:
Few things compare to the emotional roller coaster that comes with your child undergoing medical testing.
You walk into every appointment praying for a miracle. I found myself again hoping we would hear that Alena's severe Pulmonary Arterial Hypertension had somehow completely reversed.
While that wasn't the news we received, we were given something to celebrate: She still has severe Pulmonary Arterial Hypertension, but they are seeing improvement which is a gift we don't take for granted.
There was the joy of hearing those results.
Then came the relief of seeing her safely in recovery after her cardiac catheterization.
Moments later came the fear. Her oxygen saturations dropped, and suddenly the room filled with doctors, nurses, respiratory therapists, and portable X-ray equipment as they worked quickly to make sure there wasn't fluid in her lungs. And seeing the fear in her eyes as they immediately teared up made me feel helpless.
Then came the disappointment of hearing that what was supposed to be an outpatient procedure had turned into an overnight hospital admission.
But almost as quickly came peace when the cardiac nurse practitioner assured us that Alena looked great and that they were simply being extra cautious. While neither of us wanted to spend the night in the hospital, there was comfort in knowing she would be closely monitored.
Still, every alarm from her monitor would wake me, each alert reminding me just how fragile this journey can feel when her heart rate or oxygen saturation dipped too low.
Morning finally came, bringing another wait—this time for the discharge we had been promised.
And then, the best moment of all.
Watching Alena walk out of the hospital on her own.
After everything we'd experienced over the previous 24 hours, we decided to celebrate in the best way: together.
We spent the afternoon wandering through the Loveland Living Aquarium with Monika Gustafson, Anna Gustafson and Kris. There was laughter, smiles, joy and for a little while, hospital rooms, monitors, medications, and scary moments faded into the background.
Sharing life with a child who has a complex medical condition means learning to hold so many emotions at once—hope and fear, disappointment and gratitude, exhaustion and joy. It means celebrating every victory, no matter how small it may seem.
This week didn't bring “that” miracle, but it did bring encouraging news, another safe procedure, another answered prayer, and another beautiful family memory.
For today, that is enough.
