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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.

T+…..ummm….365 plus some.

We’ve stopped keeping track of the days since transplant. Now that I’m back at work, there are plenty of other things of which to keep track. “Now” being the end of October, nearly four months ago. It’s funny how quickly the days go by when you have to work every day. I got used to being semi-retired, and am now playing the lottery so I can hasten my real retirement. Side note: since the California lottery supports education, does that mean that I can claim my lottery expenses as charitable giving and therefore they are tax deductible?

With that distraction out of the way, let’s get to the news. Day T+365 was back in early January, and I had another battery of tests (pulmonary function test, full blood workup, bone marrow biopsy) to see how I’m doing. My WBC, hemoglobin, and platelets are just below normal. The bone marrow biopsy results showed no evidence of disease through the microscope or through flow cytometry. The chimerism results were a little “puzzling” to Dr. Carroll. That’s not a term you want to hear from your oncologist, at least in this context. At T+180, the chimerism was 93.8% donor. This time, the result was 85% donor. Dr. Carroll did say that it’s possible for my cells to be in stasis with the donor cells, which means they coexist without killing each other.

There are two different approaches to consider now. The first is to get a boost of donor cells without additional immune suppression. The boost comes with a very high risk of GVHD, which is serious and potentially life threatening by itself. The second is to do nothing and watch and wait. Since there was no observable disease present in the biopsy and I have no other complications, we don’t think it’s worth the risk to get a boost. We’ve done the watch and wait thing before, as uncomfortable as it may seem given the process up to this point.

In my last post, I mentioned the spiritual journey Jen and I have been on over the last several months, if not years. It has been an individual journey at times, with those experiences and encounters with God combined to make a multifaceted shared journey. I imagine that anyone who goes through what we have on some level must ask serious questions about life, death, and the world in which we live. With questions, we like to get answers – we’re wired to seek knowledge. I wish I could say we have all the answers, but we don’t. That’s why it’s called faith, right?

Without going into a lot of detail at this point (I’m tired and want to go to bed), Jen and I have recently made decisions to become more involved in leadership roles with two different things that we both value highly: Sanctuary Covenant Church and The GreenHouse. Sanctuary has been our home for the past 10 years, and The GreenHouse was formed through an idea of one of founding members of Sanctuary. Why do I mention this? I’ve always imagined that people who read this blog regularly (well, as regularly as I post something) have a reason for doing so. Some of you already know about Sanctuary and The GreenHouse, and I don’t need to tell you about the great work that is going on. Others don’t know much about either one. So, occasionally we’ll probably write about one or the other as they relate to the aforementioned spiritual journey, and we’ll look forward to whatever feedback readers want to give.

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+100: ZZZZZZZ.

Well, Day 100 is here, anticlimactic as it is. It was supposed to be a day of information gathering through a bone marrow biopsy, but I got that done a couple weeks ago. Nothing has really changed since then, though I got a few more days off from the infusion center. This was nicely timed since Jen’s folks were in town for a long weekend. We got to take Darby out for her first bike trailer ride along the American River. She rode 10 miles, and was only asleep for part of it!

After Jen’s folks left, I had some nasal congestion that I thought was just allergies. On Wednesday night/Thursday morning around 3:30, I had chills and couldn’t stay warm. My full-time in-home caregiver took my temperature, and it was 100.1. Following protocol, we called my case manager and reported my symptoms. When I woke up a few hours later, my fever had broken. I saw Dr. Carroll later Thursday morning and he was not overly concerned. I went home and took a hearty nap that day. Jen was kind and let me sleep in when Darby woke up on Friday morning, and I didn’t get out of bed except to take my pills until noon. After lunch (I had cereal) I took a nap again, and turned in early that evening too. Saturday and Sunday were similar, though I didn’t get to sleep in.

It is now almost four hours since I started this post. Darby woke up from her nap and was endlessly crying because she’s tired from not getting good sleep the past few nights. Did I mention that she got sick too? We need to teach her how to blow her nose, fast. Anyway, I don’t remember if I had a segue planned, so if this is abrupt, that’s why.

I’m sick, Darby’s sick, and we (Jen included) haven’t slept well for the last few days. This is the first time Darby has been sick, and she’s quite fussy. If I put myself in her velcro shoes, I’d be wondering, “What’s going on with me? Why can’t I breathe normally, and why am I coughing and waking up at night so much?” We’ve been teaching her sign language, and she can usually communicate pretty well when she wants something. It seems that in her current condition, she doesn’t remember how to communicate, and has regressed into crying and whining instead. Granted, I’m talking about a 17-month-old child, so this isn’t really unusual, but stay with me here.

Yesterday was Easter (He is risen indeed!). Jen and I have been following a scripture reading plan for Lent this year, taken from the Anglican Church’s Book of Common Prayer. Over the last several weeks as we’ve thought about what we’ve read and processed what’s been going on in our lives, we’ve felt strongly that we want there to be something different in our lives as a result. We aren’t sure what form it will take, but are looking forward to whatever God brings. The challenge, though, is how we respond to it. Will we act like a child and regress into our comfortable place? Or will we trust our Father and still feel safe even though we may feel uncomfortable?

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.