All Clear!

We finally heard back regarding Sarah's biopsy results, thanks to Patty's continual calls and Marsha badgering the lab.

She's all clear! It's nothing but sometime of viral infection or reaction to the meds they put her on for the EBV. We're all relieved. Sarah has clinic tomorrow and they will likely put her back on tacrolimus, her anti-rejection med.

Thanks everyone for your continued prayers and care.

Thankfulness...and awaiting more biopsy results

I started to write a blog entry about all the things I was thankful for yesterday but the document was accidentally deleted. Instead of attempting to recapture some of the words, I'll keep it short and sweet.

I'm thankful for my wife, Patty, an incredible woman who makes this life of adventure worthwhile. Without her, it would be a dull and lonely amusement ride. You're the glue that keeps us all partially sane amidst continual insanity and chaos.

I'm thankful for the four blessings God has given us: Arianna, Caleb, Katarina and Sarah. They have been resilient time and time again in the face of adversity. I cherish each one of them for the gifts God has imparted to them.

I'm thankful for both sets of parents, who have been available without question in time of need. It's a blessing for our kids to know their grandparents and share precious memories.

I'm thankful for the Body of Christ whose face has shown the brilliance of our Savior time and again in the constant turmoil of our lives the past two years. We are so grateful it's difficult to put into words.

I'm thankful for God unlocking the talent of writing within me. It has released so much from my life and has been a balm as I walk through Sarah's health issues.

I'm thankful for the writers I've met the past two years who have become dear friends; and for the friends, both near and far, who have shared their hearts, concerns and hurts through the years.

I'm thankful for our other family: those who have children with liver issues. These liver families have become part of our own as we share in rejoicing amid triumphs and crying in times of trials. You are precious to us. Some of you have become very close to our family and we dearly love you. (I think you know who you are!)

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Sarah update:
Tuesday was clinic day and fortunately the snow had subsided enough to allow Patty to safely travel to and from Seattle Children's. Because the rash on her body and face had gotten so out of control, they took a chest x-ray. Then Marsha, our transplant coordinator, at the urging of the main doctor ordered a biopsy of the skin on her back. Sarah was able to get right in for that, partially due to the weather, I'm sure. So again we wait...probably until the Monday. Why a skin biopsy you ask? Apparently some of these rashes can simply attributed to the viruses she is attempting to fight off and will eventually go away as the EBV dissipates. However, there is also something called graft vs host. While this primarily occurs in bone marrow transplant recipients it has a 15% chance of occurring in a solid organ transplant recipient.

Graft vs host as we understand it is where the antibodies from the new liver attack the host body instead of the immune system attacking the liver. It's wild stuff but the doc was concerned enough to order the biopsy. As always your prayers are appreciated.

Happy Thanksgiving, all!

SNOW DAY!

A welcome dose of snow yesterday for the Kraft family. Received just around four inches or so and enjoyed lots of play time outside even with 27 degree temps. Woke up this morning to 14 degrees. Yowser! This was Sarah's first experience playing in the snow and she loved it. It was Katarina's first time to enjoy it as she was 2 years old when we had our big snowstorms in 2008. Even with my bad back I had fun although I paid for it overnight.

Friday Follow-up on Sarah

Ok, so far the liver biopsy still has not come back. They normally take 24 hours so it's a bit past that but based on Dr. Horslen's comments, I wouldn't anticipate the news being bad.

Patty said that Sarah's EBV is down to 1600 (as opposed to the 26,000 last week) and that they are not concerned about rejection, likely because the immune system is so busy warding off the EBV. Her liver labs have also improved so that is encouraging. Finally, Dr. Horslen commented that Sarah is probably just battling a viral infection which would explain the inflated EBV numbers.

Both Sarah and Patty are pretty worn down as they were awakened quite a bit during the night. Sarah has already nodded off three times today which is very unusual for her. Patty told me the little girl hasn't even wanted to walk around the floor which is odd. To me, that means she finally got the chance to rest (instead of chase or be chased by her siblings) and her body is trying hard to recover.

If anything changes, I will let you know. For now, we still expect them to return home tomorrow (best case).

A Writing Break: Mission #1 Accomplished - The First Draft

I did it. I really did it. I wrote a book, 80,000 words of it. I still can't believe I'm saying that. I wrote a book. Wow. It's not that I am so amazing - "Wow, that Kirk Kraft guy is pretty awesome - it's that after struggling for many years to find a rhythm in my writing life, it happened.

Since the beginning of October I've written over 44,000 words. Writing has finally become a daily habit like shaving or eating. I'm thankful God has allowed me to be more productive than at any point in my life. It's not just the novel but my other writing as well.

It's true I haven't sold ANYTHING yet, and I might never do so. I'm not looking for fortune or fame. My goal is three-fold: to glorify God by using the talents He has given me; bringing a little joy to people's lives; and, writing the stories I need to tell.

If only a select group of friends, family and other writers read my work, I would be good with that. Do I desire to make at least a little money in this venture? Sure. I'd be lying if I told you otherwise but I'm also realistic about the publishing industry.

While I'm excited to finish the book (did I already mention I'm stoked?), I realize most first draft are, well, crap! As many good writers will tell you, the first draft is the easy part. Then you need to let your 'baby' sit awhile. THEN, comes the difficult part: tearing that puppy apart. Looking on the story with a critical eye and change the things that don't work. Some writers completely rewrite their novel, the entire thing.

I wanted to take a break in the midst of our craziness with Sarah to tell you that even in the darkest times, there are splinters of light shining through. My writing has been one of those things for me.

LIKE SAND THROUGH THE HOURGLASS…

Some of you may not get that reference to the “Days of Our Lives” soap opera. I hate to break out such a reference but geez, the days of OUR lives can be far more riveting. I want to begin by saying that our life is not all gloom and doom. We share a lot of joy and laughter in our home. More often than not, we’re living as close to a normal life as possible when you have a transplant child.


Sarah visited Children’s for follow-up labs today and they weren’t what we wanted to hear but were half-expected:

Scoop #1 – There are outward signs the EBV infection is not going away. Sarah has had this ever-increasing rash on her face and Patty said her poor little lips are so cracked they’re bleeding each morning when she wakes up. Rash is one of the signs that EBV is not leaving the body quietly. Sarah also hasn’t been able to shake a cough and has been waking up multiple times during the night crying out. Another sign EBV is causing trouble.

Scoop #2 – Sarah’s liver labs have jumped slightly since the docs lowered her tac dosage to .5mg daily. Still, there is always the concern of rejection and with the EBV present, things are that much worse.

On tap: Patty and Sarah trek back down to Children’s early Thursday for 7am labs, followed by an ultrasound at 730 and liver biopsy at 915. Maybe we can call this the Carnival of Tests. Sounds so much better than “battery” of tests, don’t you think? The biopsy will also be tested for lymphoma in the liver. There’s that OTHER ‘L’ word.

Once the carnival is finished, they will admit Sarah for a 2 day viral treatment to combat the EBV. Depending on what else comes back on the labs, as in acute rejection, the stay could be as long as 4 days – our customary stay time at the luxurious Seattle Children’s resort.

This comes at a bad time for me (is there ever a GOOD time?), as we are short-staffed at work and I need to be there 10 hours Thursday and 12 hours (at least) Friday. If you could pray for my mental faculties, the ability to focus amidst our chaos, I would appreciate it.

It goes without saying that Sarah and Patty need your prayers while at Children’s. As frustrating as this rollercoaster ride can be, if Sarah comes out of this with the EBV gone and no liver damage, I will be exceedingly thrilled.

A happy reminder: Earlier this afternoon it hit me that today was the 2 year anniversary of Sarah’s Kasai surgery when she was two months old. My how time flies!

The CT Scan was clean!

Most of you have heard by now either via email or always reliable Facebook that Sarah's CT scan returned clean for lymphoma. (Her daddy exhales a major breath of relief). The EBV is still an issue but the reduced tac dosage should remedy that pretty quickly. Sarah's still pretty congested and coughing intermittently, even though they tested her oxygen level at 99% on Thursday. If it continues, we may need to visit an ENT to check for swollen lymphnodes in her head.

Thanks for all the prayer and support. You all are amazing.

Skyrocketing EBV count = CT scan for Lymphoma

Just spoke with Patty and Sarah's EBV has skyrocketed to 26,000. Marsha told Patty to reduce tac level to .5mg and to plan on a long day at Children's tomorrow. Sarah is scheduled for CT scan at 1045am, so no food or drink after 7am. I always feel so badly for her when she has to go so long without food and liquid. The procedure won't end until 3pm and she may have to be intubated at some point.

Her breathing really hasn't improved and she has been coughing a lot lately so I can't say that I'm shocked by the EBV number. Still, it's sobering to have your kid going in to check them for cancer.

Please pray for the Sarah and Patty tonight and all day tomorrow. These are tough times on Patty when she is at Children's for these types of tests. If anyone local thinks they can go hang out with her, that would be fabulous.

Elevated EBV

We received not so good news yesterday. Marsha from Children's called and there had been some snafu in acquiring EBV labs from our pediatrician when Sarah visited about a week and a half ago. Her EBV level is elevated to 4900 which is by far her highest level ever. We had to have labs done this week anyway so Patty took Sarah last night.

Sarah has been sick for awhile and Patty gets really concerned, as we all do, when that is the case. Sarah's tacrolimus was reduced .5mg to 1mg twice a day to allow her immune system to fight off her cold. The good news is that her liver labs still look good. We won't know if the EBV has increased or decreased until at least Thursday. It's a good thing we've been keeping Sarah home from church and the public in general.

Marsha also told Patty the concern is that even without her tonsils and adenoids, which they took out a few months post-transplant, Sarah is still vulnerable to lymphoma. That is one of the reasons they watch the non-liver numbers so closely.

We know so many families out there awaiting the gift of a new liver (Nikki and Darby, to just name two) or who are battling a variety of issues (Olivia). Our prayer is that we all would seek refuge in the presence of the Lord and continue to step out each to live our lives to the fullest. Let's not hold back any love, any care, any thing we could do to brighten someone else's day.

Helpful, Not Hurtful

Recently, a liver friend of mine was relating an experience on Facebook. She had been really hurt by a careless comment someone had made. If you read the comment as a normal person, you may have thought nothing of it. But if you read it, as this friend and I did, as parents of children with liver disease or transplants it was impossible to interpret it as anything but callous.

This got me thinking about how people who have NOT lived with a liver child or someone else with a compromised immune system can relate to those of us who DO have such children and experiences.

It's true that each one us has different life experiences. Many of us can't imagine circumstances like a child's serious health condition, or a terminally ill loved one. We can ignore those things as long as they're not happening to us. We can even keep them at a distance if a friend experiences them. But should we?

Honestly, Patty and I knew nothing about biliary atresia or that liver disease was so prevalent in infants and toddlers. Nada. Zilch. We're hardly "experts" now, but we've seen through living it what strain, fear, anxiety and uncertainty liver families face each and every day. I'm talking specifically about those still "waiting for the call". We have been keeping tabs on little Nikki Taylor down in California who has been waiting for months for a liver donor. She has reached the point of critical need. She needs a liver now but several potential living donors have backed out for certain reasons. (I'll address this in a future post.)

Nikki and her family, and those like her, are walking a tightrope of hopefulness and caution. The friend I mentioned in the opening has a child waiting for a liver transplant. They are anxiously awaiting the call and are taking precautions to prevent unnecessary infection or exposure to sickness that would prevent surgery should the call come.

Isn't that what a parent should be doing? Watching over their child, their ill child, and keeping danger at bay? It's mind boggling to me that anyone, but especially people who say they are "friends" would make hurtful comments. Really? Have they not considered how this can affect the fragility of a parent's emotions?

Patty and I are blessed with the most incredible support system imaginable. Not once did we receive an unkind word, or an unthinking comment from anyone. So, it's that much harder for me to imagine what it's like for my friend. But I know what she is feeling because I have been there. Let's be helpful not hurtful to those around us, whether they have liver kids or not, but especially if they do.

Words carry an amazing amount of power. Let's be careful how we use them.

Walking along the Write Path

Some of you may be interested in following the progress of the first draft of my novel. I'm closing in on my 80,000 words and will call it finished at that time. Of course, that doesn't mean I won't cut many words, add many more, or do a painful rewrite at some point.

I've written over 28,000 words since the beginning of October which has somewhat shocked and certainly delighted me. Writing has truly become a habit for me, which was the goal all along. The trick is to maintain this pace and progress; to become a better writer; to ultimately create something people want to read and which speaks to their life or offers food for thought. Something that takes them away from the real world for a moment but which also connects them deeper with that same world.

I'm fully aware that many first novels die a brutal death and end up residing in a drawer, a trunk or a closet somewhere. A good experience, no doubt, but something that simply is not publishable. At the same time, I'm confident that some day a book with my name on it will reside on the shelf of a bookstore. It's not because I desire to be famous or need any validation as a writer. I feel God has called me to write and I will do it to the best of my ability. If all that ever sees the light of day is this blog or the stories I share with family and friends, it will have been worth it.