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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+…..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+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+70: Day of rest

On Thursday during his biweekly doctor’s visit, we were informed that Todd’s CMV results were negative, for the second week in a row, and he was finally granted a day off. YEAH!!!!! Friday and Sunday would be days off with infusion center visits every other day, for now. On Monday, the doctor will determine if Todd can continue with this visiting schedule.

Friday’s plans apparently did not include sleeping in and cuddling with his wife. Instead, Todd partook in two breakfast meals. One “light” meal, ‘the french toast special’ (which included french toast, eggs, and two sausage) at a men’s Friday morning group, and the other with Jen and Darby at The Orphan. He was a little full after the avocado scramble and half of Jen’s Raspberry Lemon Poppyseed pancakes. Yummy!! I’m glad his appetite was back in full force!!!

Even though the CMV could come back at any time, we’re very thankful for the day of fun and rest, and look forward to many more. We praise God for all he has done and continues to do in our lives, no matter how big or small!

Here are a few pictures to enjoy!

Darby has entered into the new phase…climbing. This is a photo taken right after she managed to climb out of her pack ‘n play during her hour of playtime. Doesn’t she look so proud?

Here are a few of our daily activities with Darby:

In these two pictures, you can see how much rain we’ve received. The river is up very high, and moving quickly, and the neighborhood park has become a lake for geese to stop by and visit:-)

And….my favorite of the bunch!!!!!

T+37: Chimerism results!

I woke up a few times last night thinking about today’s appointment with Dr. Carroll. My prayers to the Lord were nothing new. He’d heard them many times before, though this time something was different. I felt more peace and confidence. I’m recognizing that each time a major appointment arises, I find myself surrendering more and more to whatever God wants for our lives despite the outcome. I can’t really explain it, but the more we’ve decided to put our trust in God, the more he has revealed himself to us, given peace, patience, and guidance each step of the way. Makes me wonder what else He’s preparing us for? 🙂

I know many of us live life without truly considering or recognizing a need for a relationship with God, but I urge you to take a closer look at Jesus Christ. Putting trust in our Maker and letting Him lead our lives is a challenge and an incredible ride, and so worth it!

Ok, on to the results……Chimerism is at 96%!!!! This is fabulous news, and of course, everyone is very pleased. We will continue to pray for great cell counts as the days continue. The further out we get from transplant day (Jan 14), the better chance of success, as the risk of rejection diminishes. Dr. Carroll said he’s not going to get “super excited” about the results, but come day +60 or +70 he’ll be more likely to celebrate.

So, Todd will continue to go in for daily infusion appointments. Lately, he has only required hydration (mainly cause he’s not drinking enough fluids), a neupogen shot (to increase his white count), and the daily iv medication for the CMV virus. We hope the weekly CMV test results come back negative, as this would allow Todd a few days off here and there.

At some point this morning (I’m not sure if it was before or after the great news) I got this old hymn stuck in my head. What a great way to praise God for all that He has done!!!

Bless the Lord, O my soul,
bless the Lord, O my soul,
and all that is within me
bless his holy Name.

Bless the Lord, O my soul,
bless the Lord, O my soul,
and all that is within me
bless his holy Name.

King of kings (for ever and ever),
Lord of lords (for ever and ever),
King of kings (for ever and ever),
King of kings and Lord of lords!

T+1:What a ride!

Quick update tonight as it is pretty late, and I’m really exhausted. He moved out of the ICU back into his old room on the BMT unit. An MRI of his head with contrast was completed around 2pm and came back negative. The neurologist said there was nothing abnormal, though believed his seizure was the result of high cyclosporine (immunosuppressant) levels in his system. They have changed the rate Todd will receive this medication, and he will continue on antiseizure meds. Because these medications make him very sleepy, he retains very little of what’s occurring during the day. For example, he recalled very little of this morning, the transfer, visitors, etc. My hope is that he begins to have more clarity as time goes by. Tonight I shared with him the details of yesterday’s events. He was amazed and shocked, and doesn’t remember any of it. Thank goodness! I wish I could erase those images from my mind as well.

Thanks to Virginia who was a trooper and an incredible support last night as she allowed me to go home to get rest while she stayed and kept a detailed eye on Todd and his care. I was very appreciative for the 6 hours of sleep, and felt well rested this morning. Thanks V! AND, thank you to all of you who have been supporting us every moment of the day. We feel incredibly thankful for God’s provision during all of this, and have some very cool stories which have His name written all of them 🙂

I’ll leave you with a picture of Todd and Darby cuddling tonight. He hadn’t seen her since the morning before, and he was grateful to get a little snuggle with his princess before bedtime 🙂