Remembering Our Heroes…and Their Pain

Today is one of the most revered days in our country’s year, Veterans Day. We honor those who have served and defended our nation from enemy forces; who’ve fought in far off lands, on the beaches of Normandy, the dense brush of Vietnam and in the deserts of Iraq and Afghanistan. 

I stand with many others today who salute those warriors, those still with us from as far back as WWII, hoping they realize how much their sacrifice means to those of us who’ve been fortunate never to experience war of any kind firsthand. Yes, I’m a Navy veteran but I never served in harm’s way and to me that makes a great difference compared to those who’ve seen friends die before their eyes, lost their sight, arms, legs or use of their body at all.

The trauma of such loss finally found a diagnosis in the form of PTSD. Who knows how many veterans from WWI and WWII lived through their remaining days never realizing what caused their anger, withdrawal or suicidal thoughts. It’s imperative, in light of their service and of PTSD, that we take time as often as possible to let them know we value them, not only as veterans but as people.

Today is one opportunity for us to thank those men and women. But, please, make it more than an annual event. If you see someone with a ball cap signifying them as a veteran or you attend an American Legion or other military function, take time to shake their hand and express your gratitude. You’ll never know the impact of your brief message to them.  

Sheriff for a Day

These past few months have been filled with excitement for our little Sarah. We found out some time ago she was going to be this year's Snohomish County "Sheriff for a Day". The state legislature approves the "Chief for a Day" program that allows police jurisdictions to nominate children with chronie or life-threatening medical conditions to participate throughout the state.

We had the great pleasure of making a new friend with one of the deputies and his family, as well as with so many more people in the department.

First, Sarah was one of the stars of the show in the Everett 4th of July parade.

But things didn't end there. Last week was the culmination of her months of waiting. First, she was sworn in as Sheriff (and received a pile of goodies, I might add).

The pinnacle of it all was the opportunity to mingle with other families, law enforcement and even some mascots at the Showare Center and then in Burien. And did I mention she got to ride in a motorcade?

Truly another unforgettable experience for not only Sarah but our entire family. We look back at what brought us to this point - her diagnosis with biliary atresia and subsequent liver transplant - and we have seen God's hand in it all. Her second chance at life. The opportunity to do things we might never have done. The blessing of meeting other families walking similar journeys and the honor of encouraging others. 

This is a beautiful life. 

Sarah's Latest Adventure

I know not everyone is a friend of mine on Facebook where I've been posting regularly the past month about Sarah's current hospital stay at Seattle Children's Hospital, so I'm posting an update here for you.

Sarah's been in the hospital for 29 of the past 33 days. Things began simple enough: her liver numbers were elevated far beyond what they've been since her transplant 5 years ago. This led to our semi-regular visit to Children's for a liver biopsy. No problem, right? And it started that way. Acute rejection and a regimen of prednisone in-house for 4 days and then weaned off it for the next month.

Alas, some things just can't be that easy.

It turned out there was much more than just a minor acute rejection. There was an abscess and an infection. This created a lot of issues including a tremendous amount of fluid. Sarah needed a drain inserted in her abdomen and then a second one a few days later. As usual, she was a trooper. I wonder if God grants sick children a special dose of fortitude and perseverance because if it were me, I'd be a sobbing mess with all the poking and prodding the doctors and nurses do to Sarah.

Surgery became an option late last week when it seemed like the fluid would just not drain enough to clear the infection. The antibiotics were working as much as they could but not 100% due to all the fluid. No one wanted to talk about surgery because of the danger of further infection but it seemed like a very real possibility. Thankfully, the fluid has steadily been clearing out the past few days and Sarah had one drain removed Friday. There's the possibility the second drain may be removed Monday but have to wait and see.

Our warrior battles on! We're so grateful to God for carrying us through this time as there's been an (obvious) strain on our family with Patty mostly the one at the hospital, the other kids finishing up school and staying with some friends & family, and me home with our dog.

More lessons learned and to be reflected on following this latest adventure. We're humbled by the love and support we've received and by God's mercy on Sarah's life.

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