Flashback to...Scoliosis

Passing my 46th birthday this year, I've begun to reflect more and more on the past. For some reason, that contemplation took me back to late May 1980 when I was in 7th grade. I was a short kid and off-and-on shy, although really, in a class of only 60, I knew everyone.

Back in those days, public schools conducted back screenings in an attempt to catch scoliosis as early as possible. While only 2-3% of kids 10 to 15 will be diagnosed with scoliosis, it was a big deal back then. I remember the day of the screening and wondering what the big deal was about one shoulder blade being lower than the other.

The final days of school came and went and I found myself in the orthopedic surgery department at UC Davis Medical Center in Sacramento. It's there I first met Dr. Dan Benson and his wife, Karen (I will return to them in another post). Dr. Benson was one of the kindest men I ever met and a great physician. But I wasn't crazy about his diagnosis.

Scoliosis is a curvature of the spine that generally hits girls and boys who have started to grow at a faster clip. Girls are affected 5 to 8 times more frequently than boys, depending on who you listen to, but I was one of the "lucky" guys.

When my parents and I met Dr. Benson and received the news, I was stunned. That feeling intensified when I learned the prescription was the Milwaukee Back Brace - a hideous monstrosity that would prevent my spine from curving further and hopefully decrease that curve as I grew. (All the online photos I found were of girls in the brace. I will see if I can find an old one of moi which I'll include in a future post.)

Great news, I was certain, except for the fact I would have to wear it 23 hours per day...and 8th grade, then high school loomed in front of me.

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?