Four Years Later...and "Thank You" Will Still Never Be Enough

Four years. It seems insignificant when thinking of a life but this one is special. Four years ago tonight Sarah received her gift of life. That same night another family lost someone they loved dearly, just as much as we love Sarah. Our joy at the sight of Sarah growing each day is mingled with the painful realization another child died. We’ve never met the donor family personally and we still hope to have that opportunity sometime in the future.  I can’t begin to imagine what their healing process must have been like or how they are still coping, still remembering the loss of a young life with so much potential – a life tragically cut short.

For us this family will always have a special place in our hearts. They decided at some point to share the organs of their beloved child with others, and Sarah was the beneficiary of that child’s liver. The portal vein Dr. Healey was able to harvest from that liver replaced Sarah’s useless one. And the liver itself, what a beauty! To date, Sarah has had no major issues or serious rejections resulting in liver damage. While she’s had her shares of biopsies, that liver has remained strong and up to the task of dealing with an active four-year-old.

Tonight --- and each day --- we will celebrate the 2^nd chance Sarah received April 22, 2009. If things had been different and a liver had not come, our lives would be so very different. I can’t begin to imagine my life without her silly laugh; or the times watching her dress up as a little princess and giving us that mischievous smile, as if to say “yes, I really AM this cute!; or seeing how much she loves her brother and sisters and how much they love her in return. The thought of a family of five instead of six is almost too painful to consider.

So, yes, we are grateful that we’ve had these 1400+ additional days with Sarah, all because someone else shared a precious gift amidst the pain of their loss.

“Thank you” will never be enough.  

This Fragile Life

I was reminded this past week about the fragility of life. We see this daily in the liver community - babies, children and even teenagers, battling for their lives when their liver fails or as they await a transplant. But this reminder hit even closer to home than liver disease.

A coach from our kids’ school passed away. He was my age or younger (early 40s). One week there was nothing wrong with him. Three weeks later after an infection, kidney dialysis and surgery, he was gone….leaving behind his wife of 17+ years…and his two high school-aged kids.

And the question you know is coming began popping up all over the place: why?

Why is someone so loved, so admired and so important to those around him taken so young and so suddenly. It’s impossible to provide a satisfactory answer to that question, especially for those most impacted by his loss.

Our lives will go on because it wasn’t our husband, father or brother that died. But for his family there will be an emptiness that will be difficult to even explain to others. No graduation celebration with his children. No more anniversaries with his wife. No more laughs with his friends.

This is an inconceivable pain to me. I have four children and an incredible wife. I can't begin to imagine leaving them - to never see my children grow up or get married or have their own children; to not be able to share countless priceless moments with my wife as we grow old together. 

For those of us who believe in Jesus, there is great comfort in the fact this man is now home with the Lord, pain free…forever. We thank God for that and we praise Him for a life well lived. It's not goodbye, just farewell for now. 

But the emptiness remains. And the bitter reminder that no matter how much we try to convince ourselves otherwise, this life is temporal. Truly, no man knows his time.

Live your life well. Every day counts. Every moment matters.

Pediatric Liver Disease Profile #1: Biliary Atresia

Throughout the coming months I'll be writing profiles of different pediatric liver diseases. This world used to be invisible to me before Sarah's diagnosis. I'm grateful to be part of a wonderful community of people who care for each other, advocate for their children and try to bring awareness to their own little parts of the world.

Up first, the disease that affected my family: biliary atresia.

Biliary atresia is a rare pediatric liver disease that affects infants in about every 10,000-20,000 births. Race can factor into this number, and females are generally affected more than males. 

The essence of biliary atresia is the liver's inability to excrete bile (the "garbage"). This is due to bile ducts being too small to be efficient or completely non-existent. Without the ability to rid itself of bile, the liver is poisoned, leading to a hardening of the organ. If not diagnosed within 8-12 weeks of age, serious complications can occur. The disease is already life-threatening to begin with but if diagnosis lags, the danger increases. 

Hardening of the liver (as in cirrhosis) can lead to impeded blood flow which causes varices, as the blood must find "alternate" routes through the body to the heart. These varices (essentially, internal varicose veins) first cause the spleen to increase to an abnormal size before before making a new path through the spleen to the esophagus and beyond. In the absence of immediate care, these varices can burst with serious ramifications. 

The first step in restoring the liver's ideal function is the Kasai surgery. The Kasai takes a piece of the small intestine and attaches it directly to the liver in order to allow bile drainage. Sometimes this is enough to restore the liver's health and no transplant is necessary. 

If the liver has been too badly damaged to continue for the long term, transplant is the only viable option. 

Standard symptoms include jaundice (body and eyes), distended belly, lack of appetite, white stool and lethargy. These may or may not ALL be present but if you have a question, you should request your pediatrician request blood tests. 


Links for Reference and Education:

National Digestive Diseases Information Clearinghouse

Cincinnati Children's Hospital

American Liver Foundation

American Pediatric Surgical Association

The Children's Hospital of Philadelphia

Back to school...Finally!

As many of you know who've been reading this blog for any length of time, I started college at 40 and stopped just prior to Sarah's birth. Since then, I've considered the thought of returning and finishing my Associates degree but various reasons and excuses prevented me.

I'm happy (and excited!) to announce that finally --- after 4 1/2 years! --- I've registered for classes again. I only need 5 classes to finish and figure I can be done by the end of fall quarter. I'm pumped to get going again.

For me, it's really about FINISHING. I'm great at starting a bunch of different things (like the six books I'm reading right now) but I don't finish very well. So, I'm going to put that to rest. I've finished writing a novel and by gum, I can finish college, too.

Just wanted to share the news. Regularly scheduled programming will return to the blog when I have time...in between writing...and school...and, oh, YOU know the drill!

Looking Back, Looking to the Future

Did I go to sleep and wake up with another year gone? It sure seems like it. The older I get, the faster each year seems to pass. Not sure if it's because I have four small kids or another reason. I've been thinking about 2012 and wondering if time passes faster for those of us who don't stop to smell the roses from time to time. You know the person: they are so busy or have the facade of busyness that they never bother to stop and look at life passing by them. 

I think this could be my problem. It's not that I have a packed schedule 365 days-a-year. But I don find myself failing to stop and enjoy life. It's more than reading a book to relax, or watching a movie with my kids. I just don't enjoy each and every day as I should, especially not as a follower of Christ should. And definitely not as someone whose experienced the frightening reality of pediatric liver disease firsthand.

I'm not one to make resolutions. I choose to list goals; things I'd like to improve on personally or professionally. I like to make them measurable and actually attainable. To me, setting a goal of losing 30 pounds means nothing without a set plan I KNOW I will work through. But saying I will strive to become a better friend by deliberately pursuing relationships I want to nurture - now that is something concrete.

2012 was not a terrible year by any means and I'm an extremely blessed man and fully know it.  But I look forward to 2013 with anticipation and joy, awaiting all the possibilities before me and reveling in God's grace and vision for my life.

What is your best memory of 2012? What are you looking for most in 2013?

When You Aren’t Really Over It

You think you’ve gotten over it. Something from the past that you believed you’d dealt with and put to rest rears its ugly head again. You really thought if it came up again, you’d be ready. But you never are. This is how I felt this morning when Patty called with Sarah’s latest labs, the first in over three months. Results are below:

AST 117          (was 34)

ALT 347          (was 29)

GGT 154         (was 16)

ALK Phos 417 (was 264)

  

To those of you liver parents, these numbers may or may not appear startling. I’m so used to seeing them my eyes begin to glaze over when I read them. It’s not the numbers that get to me; it’s the fact Sarah will need another biopsy and that there is a likelihood of a hospital stay.

Perhaps I’ve become too complacent (or joyful!) that Sarah’s enjoyed such a “quiet” time in her liver journey. She’s experienced the longest and healthiest stretch of time in her life, post-transplant. Maybe that’s what gets me.

I’ve watched other kids struggle during this same time; some have even flown home to heaven. It’s hard to ever become fully comfortable in the land of post-transplant life. There’s always the thought rejection could occur and the body no longer recognizes the liver as a friendly organism. We just need to put those thoughts aside, though, and drink in the richness of each day with our children and other loved ones.

And that’s what I’ve been doing. It’s hard to even comprehend I still feel so unsettled when it comes to Sarah’s life. There’s still so much uncertainty and while it’s likely this will be nothing more than a bump in the road, with life resuming a normal routine, it’s difficult to maintain such positive thoughts all the time.

I’m okay now and fully realize that God may be opening up a door for us; that there may be someone, a family, a member of the staff, at Children’s that needs encouragement that we can provide. And I’m good with that. No matter how much jumbled our lives may get, or how often the possibility of rejection lifts its ugly head, I choose to focus on what is possible through God.

Unsung Heroes: The Siblings

When we think of pediatric liver disease and other life-threatening illnesses, we focus (and naturally so) on the child battling the disease. We pour all our time, energy and care into that one child. But what if we have other children?

Many of you who follow the blog who've experienced the journey of liver disease have more than one child. You know better than anyone else what those children feel in the midst of separation. As parents we want what is best for all our children but we're not always able to provide it. Husbands have to work; mothers are likely the ones spending the bulk of the time at the hospital. So what about the other kids, the siblings?

I treat each of my kids as a special gift from God. They are equally valuable and precious in my eyes. The fact their brother or sister happens to have special needs or require long hospital stays doesn't change that. In fact, the other kids are heroes themselves.

I've found that no matter their age, the level of compassion these kids have on their (mostly) younger siblings is amazing. Just because the sick child seems to be getting more attention doesn't dampen the love their siblings feel. If anything, it increases how much they care. 

When Sarah was battling a terrible bout of varices prior to transplant, each interaction between her and our other three kids was beauty to behold. They may experience the pain of distance from their mother and other strains, but they rarely show it up front. They are really so much more adaptable than adults when it comes to this. 

This willingness to adapt and to keep loving is what makes them heroes in my book.