Medical Update from Mom (Angelia) 

Hurry Up and Wait

Kya and I (Angelia) recently spent four days at Vanderbilt for heart transplant evaluation. Like Eli’s, it involved about a dozen appointments, various tests and scans, and a medical procedure. After reviewing everything, the transplant team’s plan is to admit her next week (early April) for heart-failure care. She will be placed on the heart transplant waiting list. We expect she will need to remain in the hospital while waiting for a donor heart. The wait could be weeks or months; there’s simply no way to know.   

After transplant, she will spend a couple weeks in the hospital. Once discharged, we must stay locally for at least six weeks for cardiac rehab and frequent follow-up appointments. We anticipate a minimum three-month stay in Nashville, knowing it could be six months or longer since the transplant journey is different for everyone.   

You may have seen our post looking for a two-bedroom apartment near Vanderbilt. I will be there as Kya’s primary caregiver. Eric will split his time between home in Birmingham (with Eli) and Nashville. We continue to explore housing options and feel confident a plan will come together.  

We’ve always worked hard to keep our family together, and being separated weighs very heavily on me. I truly can’t emphasize that enough. Please keep us all in your prayers.  

A Word from Dad (Eric) 

Scream

I recently saw an article about “scream clubs”. It’s not for fans of the movie Scream, but for groups of people who gather to yell their pain away. Not long ago, I would’ve laughed at the idea. I’m reserved, serious, and have a dry sense of humor. But in this season of life, I can see – no, I can feel – the appeal. 

There are times I wish I were back in the Marines, doing the job I was trained to do: blow things up. The best job any 18-year-old could ever have, and what a stress release. Oorah! These days, my adrenaline outlets are fewer. I find them in my work, on hikes, and most of all, in quiet mornings over coffee with Angelia. I’m not ruling out a future scream-club meetup, but for now, these are more my speed. 

Lessons Through Grief

People often say, “I don’t know how you handle what you are going through.” The first time I recall hearing that was after Kenny died. Angelia and I were attending Lost & Found Grief Center, meeting with other parents who had experienced the death of a partner or child. Kya and Eli were in groups with kids their age who had lost a parent or sibling.  

One parent whose spouse had died, said they couldn’t imagine losing a child. I always genuinely replied, “I can’t imagine losing my partner.” What I learned is this: we do what we must when the moment calls. No one is prepared for devasting loss. But with love, grace, and the support of others, we take one day at a time and try to make more steps forward than back.  

Impossible to Prepare 

Fast forward to today. It may seem we’ve had more than a decade to prepare for what’s ahead, but the truth is I feel completely unprepared. How can anyone be ready for a chapter that sits entirely outside our control; a chapter held between chance and loss?  

There’s the chance a donor heart becomes available. The chance it’s the right blood type, the right size, the right match in all the ways that matter.  And the heartbreaking reality that for our daughter to live, another family must face devastating loss, a kind of grief we know too well.  

It’s a life-equals-death-equals-life equation that is almost impossible to grasp. In that struggle, we’ve wrestled with many questions, including: if the heart God gave her is failing, is transplant God’s plan?   

Our role as parents has always been to walk with our children through these enormous questions, to help them understand their options and to honor their process. It’s not linear and it requires time. Our faith didn’t come from having all the answers. It was shaped by everything we’ve lived through; the losses, the questions, the long nights of trying to trust God when nothing makes sense.  

We try every day to live out kindness, love, and empathy because grace has continuously pulled us back when bitterness or anger takes over. Through this lens we’ve come to see that a donated heart is not just a medical gift, but a continuation of someone else’s love. It’s a way for that person to keep giving even after they’re gone.  

As parents, we are profoundly grateful that Kya has the opportunity to fight for life, whatever the outcome. We are thankful for the years we have had to live, laugh, and love together. We have tried to be intentional about making memories, saying yes to adventures, and noticing the good that still exists in the world. We love deeply and try to live with purpose, even when life feels unpredictable.  

Angelia; My Wife, a Mother, and a Caregiver 

I am truly Blessed that God put a fiery redhead with such a beautiful heart, spirit, and passion into my life. Angelia carries the medical load, the daily care, and the weight of it all with such grace (and the occasional use of strong, or let’s say, passionate language). We’ve found balance in how we face each turn and challenge. She is my partner in life, and I’m beyond blessed that she gave this nerdy, country kid a chance all those years ago – over 30 years ago, in fact.  

Thankful 

We are deeply grateful for the love and support you’ve shown us. I’m someone who tends to feel indebted whenever someone does something kind, no matter how many times Angelia reminds me that kindness is meant to be received, not repaid. I’m working on that. Please hear me when I say: thank you for your prayers, your encouragement, and your support of our family through the Children’s Organ Transplant Organization (COTA).  

COTA, a 501(c)(3), has been an incredible support for families like ours. They help carry the financial weight that comes with providing care for a transplant patient. This includes the parts insurance doesn’t cover, like medical-related travel, prescription medications, meals and lodging. Our pledge amount looks large, but it reflects the real cost of care for someone before, during, and after transplant. And in our case, we need it for both of our children.   

Some Context

To give context: since 2010, before we connected with COTA, our family spent $12,000 – $15,000 per year on medical care, roughly $200,000 in total. Many families face even greater financial strain, often with fewer resources and less support. Across the United States, the total out-of-pocket cost of care for all transplant patients is estimated at $180-$250 million per year. These are the direct care expenses insurance doesn’t cover: copays, travel, lodging, medications, diagnostic testing. These are the hidden costs of trying to save lives. And this doesn’t include lost wages for patients or caregivers. Multiply our experience by the thousands of families walking a similar road, and the emotional, physical and financial scale of what transplant families carry becomes more clear.  

Here We Go

As we step into this next chapter, we’re doing it the only way we know how: together, one day at a time, surrounded by the people who have held us up again and again. We don’t know how long the road will be or what each day will bring, but we do know we are not walking it alone. 

Your prayers, your messages, your kindness, and your presence in our lives have been a steadying force. They remind us that even in the hardest seasons, there is goodness, there is community, and there is hope.  

Thank you for loving our family so well. Thank you for seeing our children, for standing with us, and for helping us carry what we cannot carry on our own. We will keep sharing updates as we’re able, and we ask that you continue to hold Kya, Eli, and our whole family close in your thoughts and prayers in the coming days, as we hurry up and wait. 

With gratitude, 

Eric, Angelia, Kya and Eli