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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.

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T+199: I’m female?

Sorry for the delay, folks. We got the T+180 bone marrow biopsy results two weeks ago, but then hopped on a plane to Mile High country to visit family. We’re heading to the arid Southwest in a few days for more family fun, so this post will be mostly about my health. Don’t worry, there are plenty of photos to be downloaded and posted and stories to be told once we get some down time. Here’s one photo to tide you over until then.

Darby's first corn on the cob - yummy!


The biopsy results are pretty good. No CLL cells were detected through the microscope or through flow cytometry. The donor chimerism analysis results are also positive, though a little confusing. It turns out that the chimerism analysis is done two ways: through chromosomal analysis and DNA analysis. The chromosomal analysis showed 100% female cells, which are from the donor. The DNA analysis is a more sensitive test, and it showed 93.8% donor cells. That’s still a good number even though it’s slightly down from the 96% at T+80. Dr. Carroll’s hypothesis is that there are still some CLL cells in the marrow that aren’t detected through the microscope or flow cytometry. Over time, the chimerism results will trend toward 100% donor because of the graft vs. leukemia effect. This means that the donor cells recognize the leukemia cells as foreign and attack and kill them. The donor cells become stronger as the immunosuppression drug dosage is reduced. Ultimately, this is how a stem cell transplant is successful.

For now, I’ll be seeing Dr. Carroll every two weeks. If no GVHD symptoms occur, he’ll decrease my dosage of cyclosporine every two weeks as well. I’m currently scheduled to return to work on November 1, though he said it’s possible that I could be back sooner if I don’t have any GVHD or other complications as the immunosuppression drug dosage is reduced.

Prayer requests:
1. We remain hopeful for a continued successful recovery.
2. We have financially survived the past year through a combination of state disability benefits and my vacation and sick leave hours from work. The state disability benefits will end in mid-August, and my remaining vacation hours will be used up in the first week of September. My employer has a program that allows fellow employees to donate their vacation hours to employees who have exhausted their leave balances and are on an unpaid leave of absence. We are praying for God’s provision to bridge the gap until I am able to return to work. This is a faith exercise for us.

T+140: basic info update

It’s been a little over a month since my last post, and I’ve been getting questions about what’s going on lately. This means it’s time for a new post to keep everyone updated! We’ve been a little busy the last few weekends, and I have photos to share, but that will have to wait until I have some Darby-free time. This post is mainly a health status update.

In early May, the doc let me have weekends off from the infusion center. That was a nice change of pace, and I went in only twice a week on Mondays and Thursdays. About two weeks later, Dr. Carroll and I were talking about my progress, and he said that the only reason I was still coming in twice a week was because of my low WBC. He wanted to see what would happen if I went a few extra days in between appointments. That was a Thursday, and he said to come back the following Wednesday. I did, and my WBC was 3.2, which was a good result even though it’s still lower than normal. He said to come back in a week again, and this past Wednesday my WBC was 2.9. So, he’s happy with those results, and I’m only going to the infusion center once a week. Dr. Carroll also said that my central venous catheter was “somewhat superfluous”, so it was removed on Wednesday. I’ve explained the removal procedure before, and this time they got the cuff out. The cuff from Stanford is still there, though. I have to say, it’s pretty nice having a little more freedom without the catheter. The down side is that my labs will be drawn from my arm each week, but I think that’s a fair trade for not having to cover the catheter and its dressing with Glad Press’n Seal® every time I take a shower, not to mention the weekly dressing changes.

As I briefly mentioned before, Dr. Carroll is also gradually reducing the dose of the immune suppression drug (cyclosporin). We are watching for any signs of graft vs. host disease (GVHD). He is reluctant to release me back to work until he’s comfortable that the risks of GVHD are minimal or that whatever GVHD comes up is manageable. For now, I’m at home with Darby and Jen, working on a few projects around the house and yard. The next bone marrow biopsy will come around Day T+180 (the week of July 11), with chimerism results posted here about a week after that. Meanwhile, we’ll keep posting news here as it comes in, along with a few photos. Thanks to everyone for your continued prayers and support!

T+87: Results are in….

Bone marrow biopsy results revealed a chimerism of 96% donor! This is an incredible answer to prayer!!! We are praising God, and all He has done!!! We felt confident in positive results because of our faith, but also because of the blessing given a few days ago: Todd’s white count started increasing in response to the Neupogen shots. Dr Carroll made a ‘funny’ yesterday when he said, “All you have to do is threaten a bone marrow biopsy and the white cells just get back in line.” 🙂 With mostly all counts looking good, Todd was given today off from the infusion center to return on Wednesday and Thursday with the hopes of having the weekend off.

So, what next?

Around day 100, Dr. Carroll will begin the process of decreasing Todd’s immunosuppressant medication, Gengraf. This may result in the beginnings of outward signs of graft vs. host disease (GVHD), a common complication after an allogeneic transplant. In GVHD, the immune cells from the donated marrow (the graft) attack the body of the transplant patient (the host). Acute GVHD develops in the first three months following transplant and primarily affects the skin, gastrointestinal tract, and liver. Chronic GVHD typically develops in the third to sixth month, and can involve the skin, GI tract, joints, mouth, and other organs. The NMDP has an in-depth presentation available on their website for those who want to know the finer points on this subject. One of the best ways to prevent GVHD is to avoid sun exposure. We’re hoping for another mild summer this year because Todd will be wearing long pants, long sleeves and a wide-brimmed hat!

Many people have asked whether or not Todd will get another bone marrow biopsy at day 100 since he received one three weeks early. The answer is no. Dr. Carroll feels that the information he got with this biopsy was good enough, and the next scheduled biopsy is at day 180.

T+75: No more rest.

Well, my intermittent days off were short lived. I’m back to the daily schedule at the infusion center because my WBC isn’t responding as well to the Neupogen shots and isn’t stable without them. Yesterday’s WBC was 1.3 and I got a shot. Today’s WBC is 1.8 – not a big boost at all. My platelets dropped from 85 to 68, and hemoglobin went up from 10.4 to 10.9. I met with Dr. Carroll today, and he said he’s encouraged to see a rise in monocytes, which are a type of white blood cell, because it means there’s some recovery going on in my bone marrow function. On the other hand, he is not sure what’s going on with my WBC, so I’m having another bone marrow biopsy on Tuesday next week. The results should be available by the following Monday (4/11) and will tell us the donor chimerism status and whether there are any CLL cells present in the marrow.

Right now, I’m frustrated. It was so nice to have a few days off, to wake up to Darby’s waking sounds rather than my alarm clock, to spend time playing with her and Jen rather than eating breakfast alone in a vinyl recliner with tubes hooked up to me. From a longer-term perspective, I’m trying hard to stay patient and optimistic, and content with not knowing where God is taking us. I want a program, a plan to implement, a schedule to follow. Submission is not easy.

T+65: Fear

Over the weekend, Todd began making comments about his white counts not responding to the neupogen shots as they had in previous days. For the last month or so the trend has been for Todd to receive one neupogen shot every 2-3 days. This good sign demonstrated his body was making white blood cells and requiring less support. His recent lab results have shown that his WBC hasn’t been increasing as substantially after getting a neupogen shot. He’s needing a shot every other day. To us, this means Todd is needing more help than before and of course, thoughts of graft rejection entered our minds. Any time there is a pattern change there is cause for some amount of concern. For me, whether there is a sizable drop in Todd’s WBC, his red blood cells or his platelets, anxiety, fear and worry start to creep in.

The differences between transplant in fall of last year and now is that at the start of rejection in September/October which was around 30 days after the transplant, ALL of Todd’s counts were very low. His system was also not holding on to the neupogen, requiring that he be given shots daily to hold his WBC at around 2,000. Now, we’re at day +65, Todd’s hemoglobin/red blood cells and platelet counts have been holding steady which is good news, and he’s needing shots every other day or so.

Today, Dr. Carroll communicated not being overly concerned about rejection, though keenly aware of the possibility. He explained that Gancyclovir, medication to treat CMV – which came back negative in Todd’s system last week – have negative side effects on cell counts and these could be the possible culprit. The “60 day slump” can be expected in some patients and causes a drop in cell counts without the threat of rejection. If it is in fact the beginnings of rejection, we won’t know until we see obvious drops in all cell counts, and/or a bone marrow biopsy is performed. Either way, they can’t stop it from happening.

So, at this point in time we wait! We wait for Todd’s WBC to even out, hopefully into a better pattern than they are now. We wait for the second CMV test to be negative (results by Thursday), so he can have a few days off in between appointments. We wait for day +100 (the day after Easter), which is a very special day. All transplant patients strive to get to day +100 because it means they have a greater possibility of being cured of cancer. On this day, a bone marrow biopsy will be performed to obtain chimerism results again.

Of course, when I start to sense this fear come into my heart, I begin to wonder, “Is my hope in the outcome of this transplant?” or “Is my hope in Jesus, and all he has for me regardless of the outcome of this transplant?” It is such a struggle to trust Jesus day in and day out, especially when things are so uncertain. But, I’m thankful for the opportunity to wrestle with God, and learn more about trusting him in this process. I recognize I have no control and will choose to trust the One who does. For now, I will focus on His word:

“Cast all your cares on the Lord and he will sustain you…” Psalm 55:22

“Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.” Psalm 25:4-5

“Come to me, all who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30

News.

I guess 3 weeks is enough time to put together some answers, huh? Jen did a fine job summarizing what we found out when we met with Dr. Carroll, so I decided not to go into great detail with the answers. The best choice for me is to get a boost from the same donor, with increased immune suppression that will hopefully hold my immune system at bay long enough for the donor cells to become established.

Over the last 3 weeks, we’ve been waiting to hear back from the donor to find out whether she will be willing to donate again. We’ve had our moments of anxiety and frustration as we wait, and I’ll go into more detail about that in a later post. On Monday this week Dr. Carroll told us that the donor has agreed to donate again! This is great news and a tremendous answer to prayer! We don’t have an official date yet, but it will probably be sometime in the first half of January. The donor has to repeat all the tests again because it’s been more than thirty days since the last time she donated. In the next several weeks, we’ll also get further details about the additional immune suppression treatment.