declaration

     Sawyer had to go to CHKD today because he spiked a fever.  The tests showed his kidney is fine, but his white blood cell count is low. He most likely has a virus. This is definitely the [much] lesser of the two evils and the good news is he does not have to be admitted into the hospital.

      Sawyer gives a lot of blood samples.His demeanor is much better now when the blood is drawn because his steroid dose has been dramatically reduced.  Today he kept an exceptionally brave face while they were drawing the blood.   

     When he got home from the hospital he showed me his band-aid and said, "Dad, I didn't cry.  I didn't even need juice."  There was a long pause.  I thought he was done.  Then he said in a matter-of-fact tone, "God helped me.  God is the best."  

     Sawyer does not make declarations like this very often.  So, it caught me off guard.  We are grateful Sawyer recognized God's grace and mercy in that moment. 

Self Portrait

     

     Sawyer placed this picture on my desk today.  I thought it was a picture of an alien monkey.  Later on, he dropped by my office to make sure I got the picture and explained that it was a self portrait.  He pointed out his g-tube , belly button, and scar from his transplant.  

  I'm grateful for the explanation!

 

Sawyer Update 01/15/13

Sawyer lost his first tooth in December. 

     Sawyer's new (40+ yr old) kidney is still performing well and staying healthy.  He was in the hospital for a few days in November because of a suspected staph infection, but other than that, he gets a good break between kidney clinic visits.

     He has been bothered lately with  pain issues especially in his hips, legs and feet.  Part of his genetic syndrome has impacted his bones with mild dysplasia.  One specialist suspects arthritis, probably triggered by the dysplasia.  Sawyer will have an MRI later this month to get more answers.  He has also started some  physical therapy.

     Sawyer's genetic syndrome is still undiagnosed.   All of the testing (and it was a lot) has come up short. Sawyer has literally become a poster child for kids with difficult diagnoses of genetic syndromes.

     One of his geneticists has found a new track to explore.  He knew of a group in France that could possibly help, but the distance creates several insurmountable hurdles.  He brought Sawyer's condition to the attention of a group at Duke University.  They have now invited Sawyer to be a part of their research.

     Duke is investigating the possibilities that Sawyer's geneticist has been considering.  If this becomes another dead end, Duke will do full genome testing.  All of this will happen without us incurring any of the costs because this is part of their research program (Woohoo!!).  It would be great to get some answers to what has plagued Sawyer, especially if it will help him in the future. 

Now that Sawyer has a functioning kidney,
 he's starting to grow again.

     Sawyer is a tough little guy.  We know he struggles more than what he communicates to us.  In the last few weeks, he has had a constant headache. We thought it was related to his blood pressure  because it has been creeping up again.  An additional medicine was prescribed, which helped with the pressure, but not the headache.  So, the docs are currently working to figure this one out.

     Thank you for the continued prayers and encouragement.  So many people still inquire and reach out to us to let us know they are praying.  We are so grateful!

My Right Hand

 Today is Ben's 11th birthday! 

     The name Benjamin means "son of my right hand".  It's obvious that God knew Ben's name before time began because this is the perfect name for Ben. 

     Ben is my "go-to" guy, my "right hand" man.  Regardless of the project before me, Ben is always ready to help.  Ben will get up before dawn to start a job and not stop until the job is finished even if it continues well into the night.  He is the first one to volunteer to help others on a project.  Friends and family recruit Ben for help all of the time because they know he gets the job done!

     Ben loves God, he is a loyal friend, and has a great sense of humor.   Our greatest strength is often our greatest weakness.  So, Ben's humor often manifests itself in the form of teasing, which sends him to bed first on many nights.

     I love Ben and I'm so grateful he is my son… my right hand! Happy Birthday Ben!!

Round Two

     Last week, Sawyer finished round two of his IV therapy at CHKD to help fight his newest challenger,  the BK Virus.  Each therapy session lasts about 7 hours, but Sawyer tolerated it much better this time.

     The good news is that the first round of therapy landed a few punches on the virus.  The levels of the virus in his system are reducing.  It's not a knock out, but we are in this fight!

     The not-so-good news is that the virus has made its way into Sawyer's blood.  Although we were hoping it would not, our doctor was not surprised given the high level of the virus in his urine.

     Thanks for the continued prayer!   This puts you ringside for the knock out of BK in the near future.

    Round One

 

Sawyer's Wish

     A couple of months ago,  two volunteers from  the Make A Wish Foundation of VA, came by to interview Sawyer.  After asking him many questions about his favorite things, they ended their interview by asking him for his wish.  Sawyer responded,

"I want to have pizza with Mickey at Donald's house."

     Sawyer is getting his wish!  Make A Wish is sending Sawyer to Florida to have pizza with Mickey! They are also allowing the WHOLE family to tag along and spend a week at Make A Wish Village with passes to all of the Disney Parks, Sea World, and Universal Orlando Resort Park!!   This is an ALL expense paid trip by Make A Wish!!!

     Sawyer was giddy when he found out that his wish would be granted.  The two volunteers who interviewed him, David and Katie, recently came by to celebrate Sawyer and his wish.  They brought his favorite cake and snacks (Doritos and chocolate milk… of course!).

     It was the coolest party.  David and Katie shared all of the details regarding the upcoming trip, especially the reservation for a meal with Mickey. They also brought many gifts for Sawyer including toys and games for the plane trip and a Make A Wish t-shirt.  Sawyer slept in the t-shirt that night and it's been one of his favorites since that day. 

     We have been blown away by the thought of this incredible blessing.  It's such a big deal for our family that  I don’t think we will believe it is really happening until we get there.  Wow!

http://www.wish.org/

http://www.va.wish.org/

Round One

  
     Sawyer completed his first round of IV therapy today to knock down his newest challenger, the BK virus.  It was a long six (plus) hours, but he was able to sleep through a good portion because of a dose of Benadryl.  The Benadryl was a proactive measure to help prevent an allergic reaction to the Cidofovir and IVIG pumped into him.

Sawyer loves to save the orange fingers for last.

     Sawyer's doctor had some very encouraging news for us.  The virus has not yet entered into his blood.  They caught this virus so early that it is only in his urine and we pray it goes no further. 

     Also, his doctor was very reassuring regarding this treatment protocol.  Her protocol is much more aggressive in the treatment of BK virus than other nephrologists and she has experienced remarkable results.

        Sawyer's doctor believes this treatment will knock this virus down long enough for his immune system to take over in the coming months and keep it at bay.  Again, there is no cure, but his own body should be able to manage the virus on its own in the near future.

     Thanks for all the prayers today!  Keep'em coming!

This Has Nothing To Do With Burger King

     We found out today, through a routine urine test, that Sawyer has the BK virus. We have a lot to learn about this virus, as we just found out hours ago, but we know it can be very harmful to Sawyer's  new kidney if not treated quickly.  It appears we caught it early because they screen frequently for this virus and it was just discovered today.

     Sawyer will go through 6 hours of IV therapy in the hospital this week and again in the next two weeks. There is no cure, but the hope is to knock this virus down to the point it will not jeopardize  Sawyer's kidney.

     We appreciate your prayers regarding this virus.  Also, please pray concerning Sawyer's growth.  Sawyer should be growing with the new kidney, even a little "make up" growth.  However, this is not happening for him.  He is  below the 10th percentile in height. The doctor recently adjusted Sawyer's  steroid dosage and other tests will be performed soon. 

     Sawyer is bothered by his height especially as he sees all of his friends growing taller.   The other night he asked Karen if eating grapes would make him grow.  We hope so!

#17

     Seventeen years ago today, I became a "Gaabstopper"… I married Karen Ann Gaab.

     We met at a concert and nine months later we were married.  The first year was unbelievably difficult (mostly my fault), but we survived it and became stronger because of it.

     I fall more in love with Karen as each year goes by.  On our thirteenth anniversary I presented Karen with a list of 13 reasons why I love her and I've updated it every year since.  In year 14, I made this video for Karen...

     Here's the complete list with the newest addition… #17...

Reasons Why I Love Karen

(No Particular Order)

By Toby DeBause (Karen’s Husband)

1. She desires and seeks after God.
2. What you see is what you get. Genuine. No pretense.
3. Her integrity can never be disputed.
4. She is an incredible mother.
5. She has a great ear and loves to use it.
6. She snores only on occasion.
7. She never gives up.
8. I know she loves me
9. She knows great coffee.
10. I trust her completely
11. I’d be lost without her.
12. She never gets mad at me when I ask for help finding my keys.
13. She is my best friend.
14. She inspires me.
15. She is beautiful
16. She goes where He leads.
17. She gives all for the ones she loves.

Thanks for indulging me in my Public Declaration of Love (PDL).  But, good love requires a shoutout once in a while.

K., Still going there with you.  T.

Great Week!

For the last month, we have been concerned about several new issues regarding Sawyer's health.  One issue involves his liver and issue #2 has been more detailed than I care to explain right now. 

We got a GREAT report this week.  We found out that issue #2 was a combination of an infection and an adjustment needed in one of Sawyer's anti-rejection meds.   Infection is a scary thing in an immunosuppressed kid, but his body handled it well.  The infection has passed and he is doing well with the new dose of the med. 

We have an appointment with a liver specialist next week, but our doctor shared Sawyer's labs with the liver specialist in advance.  The specialist said he was not concerned by what he saw.  This  is AWESOME news!  There is still an issue, but it's good to know that there is not a huge train wreck around the corner.  A GREAT relief!

A good report is not the only great thing happening this week.  We have witnessed a significant change in  Sawyer this week as well.  He looks better and has more energy than he has had in a year.  His sense of humor is coming back as strong as ever too.  It is AWESOME to watch him acting like pre-kidney failure Sawyer.

Great week!