Recalling the Beginning of our New Life - April 23, 2009

Six years. Hard to fathom it’s been that long. Time apparently flies even when you’re not having fun.

Six years ago, my kids were all little tikes. Arianna was not quite 7 and in first grade.  Caleb was in preschool and Katarina just celebrated her 3^rd birthday.

Six years ago, this very day, April 23, we began a new journey as a family, our new “normal.” Maybe we knew it from the time Sarah was first diagnosed with biliary atresia. We certainly knew it after her bleed that March. Reality can be difficult to accept, especially when your child is involved.

Still, we walked the road that lay before us. We've battled through the times of separation, the times of pain, the times of emotional instability and the times of endless questions.

We stand here now, in one piece, because of God’s grace and mercy. We stand here now because of a collection of people too numerous to name each one. But we wouldn’t be standing here without all of them.

I’ve said this through Facebook and other venues. The words don’t seem adequate but they’re all I have: THANK YOU. We have six years of thankfulness to dispense.

THANK YOU to the wonderful nurses on the transplant floor who’ve cared for Sarah, many of who became friends.

THANK YOU to the surgical staff for their remarkable abilities and care.

THANK YOU to all the doctors we’ve come in contact with due to Sarah’s frequent visits.

THANK YOU to the Transplant team, a spectacular assembly of transplant coordinators, nurses, doctors and surgeons.

THANK YOU to all the friends and strangers (who became friends) for spending quality time with Patty and Sarah, lifting their spirits, making them laugh, bringing gifts and supporting our family over the years.

THANK YOU to all the prayer warriors around the world who never wavered from the time of the original diagnosis through the realization a transplant would be necessary even to now, when even “normal” can fall outside the realm of ordinary. We wouldn’t have survived without you lifting Sarah and our family up in prayer.

To all of you, we are eternally grateful.  

Six years with our family still intact. God is gracious to us, beyond expression.

Navigating a Life of Uncertainty

Living with a pediatric organ transplant recipient can be challenging enough without bumps in the road. Watching for signs of illness, ensuring they get enough rest and that they eat well can seem like a full time job. When the bumps do come (and they always do), it opens a set of potentially troublesome experiences.

In my last post, I detailed my struggles with Sarah’s biopsies and their outcomes. While she returned home last Monday, new issues remain unresolved.  The liver docs added a new immunosuppression med to her daily regimen and she continues to slowly wean off prednisone.

Thus far she seems to be handling the new medications fine. To watch her, you’d never think anything was wrong with her. She’s the same funny, joyful, excitable little girl she’s always been.

But that’s the problem with transplants.

You never see the inside.

After further review of Sarah’s biopsy results, it’s been determined donor-specific antibodies (DSA) are affecting her liver’s “happiness” within her body. Additionally, our liver docs confirmed fibrosis, or scarring, is more evident and seems to be ongoing as they review past biopsies.

The good news is that the scarring is at such a slow rate a second liver transplant will not be necessary in the near future. The not-so-good news: it’s highly likely Sarah will require a new transplant sometime between two to ten years. That’s sobering reality for our family.

We always knew this new life – our new “normal” – living with an organ transplant recipient would not resemble what other family’s consider a normal existence. We have to worry about things like pneumonia, EBV, CMV and lymphoma either because of a suppressed immune system or as a side effect of the immunosuppressive meds.

Navigating this life of uncertainty in which we find ourselves, somewhat intensified even from the past, is proving to be daunting and heartbreaking.

Maybe I’ve always suspected Sarah would need another liver sometime in her adult life. I didn’t consider the possibility she’d need one before she reached adulthood.

The sunny side of this is the hope that the new med will prevent future scarring. There are still many unanswered questions regarding the DSA and what else might be happening in Sarah’s body. It’s once-a-week labs for the time being so they can monitor her liver numbers. Those numbers – ALT, AST, GGT and others – will start to paint a picture of where her story may be headed.

So, how do we navigate this life we’re living? Aside from breaking down every so often and crying out to God, we find ourselves falling back into His arms and relying on the prayers and support of those around us, hoping the need for a new liver won’t arise too soon.

In the end, hope is all we really have. 

Here Comes That Feeling of Utter Helplessness

Every day I’m grateful to be alive and share my life with such a wonderful bunch of rascals. 

Our lives would be very different today without any one of them. It’s something I find difficult to fathom but end up thinking about more than I should. It’s all because of biliary atresia and the resulting liver transplant Sarah received nearly six years ago. 

Yet, we’ve been one of the fortunate families. Our baby received a new gift of life. She fought hard to reach that point, but she did. And she’s still with us.

So many families are still grieving the loss of their child weeks, months and years later. What would they have grown up to be? What would they have accomplished? The only answer to those questions is blank pages.

So I understand how truly blessed we are to have our family of six still intact. Our marriage survived the tough times of many nights separated by hospital stays. We survived trying to reconnect as a family after long absences. But its things like today that throw it all up in the air again.

No, Sarah isn’t seriously ill and we’re not looking at an extended hospital stay like that blasted infection from last spring. It’s only a biopsy and yet whenever I hear that word now I consider all the possibilities and not necessarily just the positive outcomes.

I consider the very real possibility of a 4-day hospital stay. I consider, ever momentarily, something happening like last year when the infection wreaked havoc with Sarah’s body for more than 40 days and left our doctors scratching their heads much of the time.

And this is where the feeling of utter helplessness sets in. It sinks it’s claws deep into my tissue, even my bones and lets me know, I’m really not in control of Sarah’s health, her future.

She could live to be 100 years old and never need another liver transplant.

She could require another transplant at 14, or 20, or 40. Would those be as successful as her first one?

As the parent of a liver kid, I honestly grapple with all of these thoughts. In the end, God is the only one that knows Sarah’s future. I’m still learning to live in the here and now because tomorrow is never guaranteed. For any of us. Still, I wish that feeling of utter helplessness would find another place to live. Permanently.