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T+2 years: A-

A few weeks ago, I had my 2-year follow-up appointment, which consists of the usual blood work and another bone marrow biopsy. Dr. Carroll once again displayed his excellent technique on the biopsy; the initial lidocaine application was really the only painful part. I’m not trying to display some manly image, he’s really quite good at the procedure.

The blood test results showed that my counts are all normal, with the exception of platelets. Those are still hovering just under 100k. Dr. Carroll said that they might never return to the normal range (150-400k), but he’s not concerned since my platelets aren’t dangerously low. There were no surprises on the blood work, since my counts have been pretty stable for a while now. The bone marrow biopsy results, on the other hand, really surprised us! Background: at T+87, the chimerism was 96% donor. At T+180, it was 93.8% donor. At T+365ish, it had dropped to 85% donor. In July 2012, the chimerism dropped again to 76% donor. If you’re not sensing a trend, go back and read the last few lines again. We did not have high expectations for the chimerism results, and even though there had been no evidence of CLL in the previous tests, I was mentally preparing for news that it had come back. Dr. Carroll was his usual stoic, dispassionate self, so we were shocked to hear him say that the chimerism results showed 92.8% donor, with no detectable CLL cells in the microscope or flow cytometry!

Here are a few verses from Romans 8 that seem applicable:

Romans 8:18  I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

This verse doesn’t mean that I will receive glory because of my suffering over the last 12 years. A wise man once said that context is critical. The first part of Romans 8 tells of the transformative power of the Holy Spirit that enables me to live as a child of God in spite of these circumstances. God’s glory is revealed through how I live my life.

Romans 8:26-28

26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God. 28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

There’s a lot of theology in these three verses. I’ll stick with what I know. Over the past 12 years, there have been many times where I have felt weak, both physically and spiritually. In those times of spiritual weakness, I didn’t know how to pray. I couldn’t find the words to express what I was thinking, but God knew anyway. The “good” in verse 28 is often misinterpreted to mean that God makes all things good. I disagree. I think it means that God will work in good and bad things in our lives to give us some “good” thing, whether that’s a tangible physical good or a spiritual good. In my case, I have plenty of both!

Now that we are this far, we are going to write to my donor to express how thankful we are for her sacrifice. We thought it would be an opportunity for everyone who has been on this journey with us to share their thoughts as well. If you want to do that, you can either write something as a comment or email one of us directly.


Dear Ms. Donor….

Dear Ms. Donor,

A few weeks ago we received your postcard which read, “I’m pretty certain we will succeed! I wish you a Merry Christmas! Yours.” It’s odd to be so limited in the information we can obtain and provide when dealing with a person who is willing to undergo testing, needles, blood draws, neupogen shots, and finally, apheresis for the opportunity to save Todd’s life. Although it’s neat and exciting, kind of in a pen-pal sort of way to have the anonymity, we wish we could send you pictures, share our battles and our victories, and somehow include you in this process. Because after all, you are one of the most important players in this transplant game. And not only have you gone through this process once, but you were willing to be put through it all over again for a second time. Thank you for taking the time to send a postcard, for your simple words of encouragement, and for being so willing to give of yourself literally. We know God’s hand was at work all along. We hope one day you’ll be able to read this and know how appreciative we really are of you.

One thing we’ll share that we’re not supposed to know, but we do…..is that you’re from Germany!!!! 🙂 Two details gave it away. On the day of the scheduled transplant, there were several severe storms covering the midwest and a major part of the east coast. We were told the cells which were traveling from the processing plant in New Jersey wouldn’t arrive until late that night or possibly early morning, and as a result the transplant would be postponed until the following day. When I arrived the next morning, I told a staff member, whose name will remain anonymous, “It’s transplant day, again!” To which she replied, “That’s right! The bad weather and the fact that they were coming from Germany…” The other detail which confirmed Germany, was the lovely picture on the front of your postcard. A beautiful tree, covered in snow with red, lit candles and amazingly intricate ornaments. What I didn’t know, but recently learned is that a German Christmas tradition is to decorate the Christmas tree with live candles. Pretty cool!

You know we’ve never been to Germany! We might have to make a trip over to say hello 🙂

If you’re interested in becoming a bone marrow donor and for the opportunity to help save a life, please consider checking out the National Marrow Donor Program.