"Our Little Trooper"

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

Friday, January 15, 2016

"It's OK Mom, God already had this planned out, we just didn't know."

I got a call from one of the doctors in Seattle this week.  She called me immediately after the transplant board met about Rowan's case, Wednesday evening.  It was not the news we wanted to hear.  They did unanimously agree that Rowan needs a bone marrow transplant as soon as possible, but unfortunately they also unanimously rejected Zoe as a potential donor.  Let me explain...

Zoe's recent labs had increased markers for autoimmune disease, was positive for connective tissue disease, showed anemia, thyroid issues, low vitamin D, and increased eosiniphils.  This, coupled with her ongoing history of anemia, anaphylactic reactions, and fibromyalgia are concerning them.  I know your first reaction may be, "well, wouldn't it be better for Rowan to have her health issues, instead of his more severe health issues?".  It's not that simple though.  

See, Rowan has what they are calling "Clinical Shwachman Diamond Syndrome" or a "Shwachman Diamond-like Disease", but because he has other issues too that they haven't seen before with SDS, and the fact that his genetic testing so far showed deletions that again, were rare and unknown.  When we were there this past November, they  told us that they believe he has something bigger/broader than just SDS, something "extremely rare, possibly even not yet known or named".  Because they don't have a specific known diagnosis, they cannot test Zoe for it.  The doctor explained to me, that diseases can present them self differently from person to person.  With Zoe having so many of these flags on her labs, and a medical history of her own, they cannot exclusively rule out the possibility that she and Rowan both have the same disease, just different variants of it.  They fear that giving Rowan her marrow, could cause him to express the disease the same way he does now.  That is not a risk they are willing to take.

I was devastated to hear this news.  We had all (the doctors included) had so much more hope and peace moving toward transplant, when we thought he had a 10 out of 10 sibling match.  This news changes everything.  The doctor felt so bad calling me with this update.  She apologized profusely for not having better news.  

Of course my next question was, "What now?".  The main transplant doctor had to leave town right after the meeting for a conference, so he will be contacting me sometime next week, but the hematologist who called me did explain a few possible options that they discussed.  Not all of them are great options though, so we are praying for God to show us what His plan is.  

1.   There is one more genetic test that they are trying to get insurance to approve for Rowan.  He has already had the whole genome testing done, and as I said, his deletions were rare and unknown so they did not provide us with a clear diagnosis.  There is an even more in-depth test called a whole exome study.  If the geneticist can get insurance to approve this, and if they find a known disease causing variant in Rowan, then they could test Zoe for the same variants, and if she does not end up having the same disease, then they could reconsider her as his donor again.  This is obviously a long shot, time consuming, and expensive, but it is one potential glimmer of hope.

2.   Option two is finding Rowan unrelated donors from the National Registry. Ideally, they like to have 2 viable donors, so they have a back up if something goes wrong with the first one. They have already done a registry search, and have only found one potential donor.  However, they have not yet located this person.  They need to find them, contact them, see if they are still willing, and then do further testing to see if they are indeed a good match for Rowan.  Please be in prayer that they do find this person, that they are the best possible match, and that they also find a second potential donor so we have a back up.

3.   Option 3 is finding a cord blood donor from the registry, instead of a bone marrow donor.  However, this is not ideal.  Because it is so immature, cord blood has not yet been exposed to disease, which means it has not built up immunity like mature bone marrow has. It does have a lower risk of graft versus host complications during transplant, but it also carries with it a greater risk of life threatening infections.  She indicated that this would not be their first choice for Rowan.

4.   Option 4 is a "half match" transplant using the parent.  However, since we do not know what exact genetic disorder Rowan has, they cannot test Brian or I to make sure we do not carry that same genetic variant.  So, like Zoe, Brian and I would not be approved by the transplant board at this time.

I know this is lot of information.  Believe me, it has taken us a couple of days to take it all in ourselves.  I am only sharing it so you know how to support us and pray specifically.  Besides prayer, and good thoughts, the BEST way you can help is to go to www.bethematch.org or www.deletebloodcancer.org and sign up to be a bone marrow donor today! All it takes is a few minutes online, and a swab of your cheek when your kit comes in.  The odds of one of you being Rowan's donor are slim, but think of all the other people out there waiting to find their match.  No one should be where we are right now (trying to find the only potential match), or worse (without even one potential match).  There are over 5000 followers on Rowan's Facebook page.  Can you imagine how many lives we could save if even half of you signed up!  Please, consider joining the registry today...for Rowan, for his little friend Roman who has zero matches currently, and for all the others out their in need of a bone marrow donor.

When I got off of the phone with the hematologist Wednesday night, I have to admit, I cried.  It was just so disappointing.  Especially after we left Seattle just 2 short months ago, excited about the gift of Zoe being a perfect 10 out of 10 match.  Rowan and Ian had been upstairs playing, but overheard me on the phone, so they came downstairs when I got off the phone.  I apologized to Rowan for crying, and assured him that I wasn't crying because I was worried or scared, just because I was still a little shocked and disappointed.  He hugged me and said "It's OK Mom, God already had this planned out, we just didn't know."  I explained the possible options to Ian and Rowan and then we prayed together.  Rowan of course, was just fine...no, better than fine.  He prayed: "God I know you have a plan, you always do.  And, I know you will be with me the whole way, no matter what happens.  We will just wait calmly, and see what your plan is.  Thank you."  Ian also thanked God for working out all the details for us.  I was just blown away by their faith and peace.  Funny how kids can put things back in perspective for us adults.  They are right, and I know it, but it's nice to be reminded.

Last night the boys and I went to see Zoe in Austin, so we could explain it all to her.  Brian was working late, or he would have been there too.   Zoe was of course disappointed when I told her.  She really was ready to help her brother, and they've been calling themselves "twins" and "matchers" for months now.  

I am so proud of how all 3 kids have stuck together through this, from getting tested nearly a year ago...

to finding out which one was the match...

(Rowan surprising Zoe when he found out she was his match.)

(And Rowan consoling Ian when he told him he was not the match.)

.  Regardless, it did my heart good to see all three kids together again last night, smiling together even after the unfortunate news, that now, neither of them can donate to him.

It reminded me that we ARE going to be OK.  God DOES have this planned out already.  We just don't know which avenue he will take us.  Thank you for being there with us on this journey, and for continuing to keep us in your thoughts and prayers.


  1. No words to even say. It blows my mind how you all continuesly go through this unknowing and pain... However ALL hold your heads up with faith. You're whole family is a true inspiration to me. You are all always in my prayers and are on my wall in my new prayer room. God is amazing and I know He will see you through this. Thank you again for being so transparent and sharing the good and the bad!!!!

  2. Prayers to your family. Please remember, if God brings you to it, he will see you through it. Lean on your faith and trust God does ALWAYS have a plan.

  3. I has to read your a couple of times to make sure that I understood all the facts. I was devastated and felt such disappointment but then like so many other times Rowam gave me perspective, and he is right God has a plan we need to stay strong and know that his plan will be revealed. We continue to pray for Rowan and your amazing family. My life is so enriched by Rowan's wisdom, faith, and spirit. God Bless your family and Rowan.
    Carrie you are an incredible person and your family is amazing.