"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Thursday, June 16, 2016

"It's not just a new day...it's gonna be a new life!"

Rowan has a pretty big announcement to make, and he wanted to do it in a pretty big way...
So, on his request, we made a trip to Enchanted Rock State Park this week.
And in typical form, he didn't just climb up... he ran up.

Once at the top, he had a special message to deliver. First, he gave thanks to God.
Then, he wanted to share something with all of you...


That's right.  Seattle called and they have decided to proceed with his bone marrow transplant as soon as possible, with me, his Mommy, as his haplo-identical/half-match donor. 

I realize that you have all been diligently praying that his match be found.  We are not taking this as a defeat though.  Sure, we wish they had found a 10 out of 10 match from the national registry, but one has just not been found.  You have all been great, getting swabbed, hosting swab events, spreading the word, etc.  There have probably been 400+ people added to the registry now, because of his story.  And Rowan does not want you to stop yet! He is committed to continuing to inspire people to register, not for him, but for everyone else who is still out their waiting for their donor match to be found.  You will still see him with Jason from Marrow Match, and Jon from GenCure, dancing, laughing and signing people up to help save lives.  As Rowan said tonight, "If so many people wanted to be my match, I hope they will still try be other people's matches too... for me, and for them.  It's want I want most of all."
We rested at the top...

Did a lot of sitting and thinking...

Celebrated, embraced...

And remembered Rowan's first famous quote...

"Love your life!"
...no matter what.
We all have hills to climb...or mountains even...

and we all have baggage to carry with us as we do...
But only God knows where the top actually is, and more importantly, which way we will get there. 
Our job is to listen, remain faithful, and to love our life, every step of the way.
Whether its the top...
the bottom...
or somewhere in between...

If we learn nothing else from Rowan's story, I hope it's his first message ever...
Because Rowan sure does...no matter what...either way...
And now for the scoop...  Rowan and I will be leaving July 1st or 2nd to drive to Seattle.  He and I need to be there for our 2-3 weeks of outpatient testing, evaluation and stem cell collecting.  My birthday is July 15th, his is July 21st.  The team promised to try to give him his birthday off, so he can celebrate before being admitted for transplant.  He will undergo about 2 weeks of chemo and immuno-suppressants, and the target transplant date is August 4th.  He will be in the hospital for 6-8 weeks straight, and then will need to stay in Seattle, near the hospital until around Thanksgiving.  Our goal is to make sure we are back home in Texas for Christmas.
The reason they are proceeding with me as the donor is that the risk of waiting is becoming too great.  He continues to have neutropenia despite his daily neupogen infusions.  He continues to get infections, despite his ivig infusions.  They have optimized his treatments, but his repeat septic events just keep getting worse and worse.  They fear the next trip to ICU could be the last one.  They have done their best.  They have scoured for suitable matches.  They have researched the newest protocols, and determined the best one for his situation.
The protocol that they have agreed upon is very new, very sophisticated, insanely high-tech and quite honestly, mind blowing.  It is part of a brand new clinical trial.  There have only been 12 non-malignant bone marrow failure patients receive this specific treatment protocol.  Rowan will be the 13th.  They will be collecting my stem cells on several occasions when I get there.  One sample will be sent out of state and it will undergo a targeted t-cell depletion.  They will remove the t-cells from my stem cells, but only the ones that cause graft versus host disease.  They will leave the t-cells that are known to help with engraftment and the ones that are known to help fight infection (previous protocols depleted them all and had less than optimal engraftment and greater incidence of incfections).  Then, they will insert a gene into the cells that will help it become more susceptible to a special GVHD drug that they can use later in transplant if he is not responding to typical GVHD treatments.  They call this genetic modification, an "insurance policy of sorts", because it gives them options should he get into trouble a few weeks in to transplant.  Amazing, isn't it?!   It is not a perfect plan, but it is a good plan, and we are believing it is God's plan. 
Thank you all for praying us to this, and we ask that you continue to pray us through this.  Four to five months away from home...2000+ miles away from home no less, will surely be difficult for Rowan and I.  Brian and the other two kids will not be able to be there with us for the entire time obviously.  They have work and school in Texas.  We will do our best however, and they will be there whenever it is feasible.  This is new, relatively unchartered territory, but we are trusting God that this what we need to do to give Rowan the best chance at living a fuller, healthier, longer life.  Please also pray for our finances.  We are making the smartest choices we can, like driving to Seattle so we don't have to rent a car for months at a time, using airline miles for plane tickets for Brian and the kids, etc.  However, insurance will not cover any of the outpatient travel, lodging or living costs in Seattle, and as you can imagine that will add up so quickly.  Texas Medicaid will not cover any of the medical costs that are uncovered by insurance either, and there is not a similar waiver program in Washington, so we do not have that back up like we do here at home.  Please know though, that our greatest concern is doing what is best for Rowan, despite how hard it may be on us logistically and financially.  We are confident that this will all work itself out, and we are committed to Loving our Life, the whole time! 
We are standing on the edge of something big, and we don't just feel that weight...we feel that hope as well.  As Rowan explained it, "It's not just a new day...it's gonna be a new life!"
Thank you again for your prayers, support, and friendship.
We hope you stay tuned...Rowan's story may just be beginning:)




  1. This is awesome news; praying god fulfills all your needs! :-)

  2. Carrie,
    We will be holding you (everyone of you) in prayer. Here's to loving life, and new beginnings.

    Jen Deming

  3. What hopeful and exciting revelation. Prayers as always, but with specific requests!

  4. I am a relatively new reader to your blog and a big fan of Rowan's faith and wisdom. Could you do a fundraiser with Love Your life No Matter What on t shirts? I know you (or someone) did the shirts in the pics. this is similar yet different. My prayers continue to be with your family.