T+254: Changes in the works.

I’ve been thinking about writing a new post a lot over the last few weeks, but there are too many things about which I want to write bumping around in my head. I owe my readers a post about the U2 concert back in June, a post about how much fun we’re having with Darby (complete with pics and videos!), a few posts about the spiritual journey Jen and I have been on, and of course a health update. Even though I’m not back to work yet, it seems like there isn’t enough time to get everything done in the time frame I want. For now, the easiest thing is a health update, so here it is.

Healthwise, I’m doing pretty good. As of this morning, I’m off Gengraf (immunosuppressant) completely. I saw Dr. Carroll two weeks ago, and he commented that my blood chemistry looked great. My WBC is still a little low (2.6 that day), but it’s been holding its own without Neupogen for the last six weeks. My platelets are also low (75k), but similarly steady. I’m still avoiding sun exposure and being careful to avoid sick people, but otherwise am leading a fairly normal life. Except for going to work, that is. I see Dr. Carroll again in two weeks, and I’m hoping I’ll be cleared to go back to work. It’s been 13 months since I began my leave of absence, and it will certainly be an adjustment when I return.

The next bone marrow biopsy will be in about 3 months. I’m not anticipating frequent health updates since I won’t be seeing Dr. Carroll as often. Instead, I’m hoping to transition to writing about the topics mentioned above, and whatever else comes to mind. I can’t promise the highest quality content all the time, but feel free to continue reading and commenting.

The other change is the domain of this site. Back when I started this blog and registered the kritiostodd.com domain name, blogs were just starting out. I had a bunch of big ideas for what I wanted in a website, and never really implemented them. The functions and features that WordPress provides are enough for my purposes, so I probably won’t renew my domain name when it comes up later this fall. For those who aren’t familiar with domain names, you can always get to this blog at kritiostodd.wordpress.com.

That’s it for now. More news as warranted.

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+163: pneumonia

Well, Todd has been admitted to the hospital for bilateral lobe pneumonia. He’s been hooked up to hydration and IV antibiotics around the clock for the last two days. Each day he’s been getting better. Today, he sat up in bed to eat, he showered, and his face lit up when he saw Darby. These are all very good signs that his energy is returning.

About 5 minutes after Darby and I arrived this evening to visit, Dr. Carroll popped in to check on Todd. He didn’t have much to report, though said he would keep Todd on the IV antibiotics in the hospital for the next day or two and then continue the IV antibiotics in the infusion center for the next 10-14 days. Dr. C didn’t like the idea of Todd taking oral antibiotics in combination with his immunosuppressant meds. I’m assuming this is because there is concern for the lack of the effectiveness in treating the pneumonia with the oral vs. IV antibiotics, though I’m not absolutely positive. So, this means Todd will return to the infusion center for daily appointments for at least 2 weeks. What a bummer! However, we’re pleased he is responding well to the antibiotics. The fever is gone, his cough has subsided, and his energy has improved.

We’re thankful! I believe God has prepared us in so many ways to be more trusting, patient, and calm when these bumps in the road occur. There was a lot of peace, which I KNOW came from our Lord because being calm during these times has been a tad uncharacteristic for me Thank you Lord for the trials you’ve put in our lives because it has made us depend on you so much more, and we know only You could have given us the strength we needed to get through them.

FYI: Todd has his Day 180 appointment scheduled for July 11. This is another big milestone in the transplant process, as another bone marrow biopsy will hopefully reveal great results. And THEN maybe we can celebrate…..it’s been a long time comin’!!!!

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?