My first GVHD

A few days ago I got a rash. Thus far, we’ve learned that any change in my status quo, means something. So I contacted my NP at UCLA. Since we had a scheduled appt already and I had no fever, we waited for that appt.

The gist is this. I have my first case of graft vs. host disease, aka GVHD. It sounds horrible. The notion that my grafted cells are being combatted by my immune system seems to be the worst case scenario. Here’s the explanation…

My NP dumbs it down for me with the realization that I actually got some kind of sickness; the flu, bad cold, etc. My grafted cells (the stem cell transplant) have been grafted, and thus are my immune system. So, they went to work killing off the sickness! Yippy! I never even experienced the sickness!

However, as soon as they killed the virus, they went looking for something else to kill, and those “foreign” cells were the next target. Hence, I got GVHD.

This is a sign that my graft has has grafted, and that I’m actually doing well! I even recall being told, so many months ago, that getting a little GVHD is good, and will be a welcome sign. They plan for this, and were quite ready. I’ve returned to a med I once discontinued, and have added a few more. These should do the trick!

Now, on a side note, very few truly understand how hard my wife has worked over the 18 months. There have been months that were basically single-parent months for Deanna. She has done a tremendous job! I cannot fathom doing this without her!

So as I thank God for his provision and care during this long journey, I’m reminded to thank Him for her as well. She has been the active and real Jesus in my day to day.

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2015 Challenge, Week 3 Outdoor Photography – TREES

2015 Challenge, Week 3 Outdoor Photography – TREES

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2015 Challenge, Week 2: NUMBERS – 10 and Under

2015 Challenge, Week 2: NUMBERS – 10 and Under

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2015 Challenge, Week 1: MACRO – KITCHEN

2015 Challenge, Week 1: MACRO – KITCHEN

This is my submission for this week’s theme of PhotoChallenge.org. I liked that the onion was sprouting new growth. I’m still getting the hang of my dad’s old Canon zoom/macro lens, so this isn’t as sharp as it could be, but I’m happy with it nonetheless.

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2014 Challenge, Week 48 Landscape – Cityscapes/Townscapes

This week’s submission to the 2014 PhotoChallenge, week 48 Landscape – Cityscapes/Townscapes.

2014 Challenge, Week 48 Landscape – Cityscapes/TownscapesThis is a slightly elevated shot of Santa Maria and Orcutt, where I live. There are only a few locations that will allow a decent elevated view of our small community, but this one is the closest. The others are farther away, and end up making the town even smaller. (I don’t have a decent zoom, so I chose to remain closer to town but not as hight.)

This image is 4 photos stitched together in PhotoShop. Then processed in HDR Efex Pro 2, for the tone-mapping. The back up, or runner up, image below is identical, except I processed it in Silver Efex Pro 2.

Back to the week 48 submission for PhotoChallenge.org

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So much to be thankful for today, and always!

I personally have so much to be thankful for these days. I want to tell you all about it, later in this post.

But first I want to share with you why Thanksgiving as a holiday is special to me. Some believe that the early Americans who kinda created this so-very-American holiday, may have borrowed the notion from the traditional Jewish festival called Sukkot, or the Feast of Tabernacles. What? Never heard of that?

Well, first, the early setters were Puritans, and as such quite Reformed or Calvinistic in their doctrine. For them, the idea that the Church was in essence the New Israel, meant that there was a respect and understanding about much of the traditional Jewish holidays, etc.

The Feast of Tabernacles, (Sukkot from now on) is basically a celebration of God delivering  Israel from persecution at the hands of Egypt. It happens during the fall harvest, as our Thanksgiving happens at the end of the fall harvest.

The Puritans had fled persecution in England, and ended up spending about a decade in Holland, which was considered a safe haven from religious persecution, at that time. So their relocation to the New World was in face a kind of Exodus-like experience for them. It makes sense that they’d seek a similar way to commemorate their Exodus, the way the Hebrews did.

In time, the Jews began to see Sukkot as a celebration of God’s provision and steadfast love. The Puritan settlers were celebrating the same.

“Give thanks to the LORD, for he is good,
for his steadfast love endures forever.
Give thanks to the God of gods,
for his steadfast love endures forever.
Give thanks to the Lord of lords,
for his steadfast love endures forever;
to him who alone does great wonders,
for his steadfast love endures forever;”

(Psalm 136:1-4 ESV)

There is so much more I could write about this topic, but if you don’t get it now, you’ll only be bored by more information.

God loves us. His sovereignty over all of creation can be seen all around. Celebrate that today! His grace abounds, and I celebrate that much more these days than ever before.

I’m thankful that the Lord has sustained me so well the past 16 months. He’s used so many of you to help us financially and prayerfully, and that has been such a blessing.

I’m thankful for the amazing wife I have! She could not be any more perfectly made to be my companion. In the midst of our suffering, she rises to the occasion time and time again. She has modeled for our children the most holy example of fulfilling her vow to care for me in sickness.

I’m thankful for my kids! Each of them has grown in ways that only God-ordained suffering can induce. They’ve grown together, looking out for each other more. And they’ve grown up in their understandings of being responsible and contributing to the household. Just a week or so back, our 12 year old boy texts Deanna asking, “Don’t the trash cans need to go out tonight? Should I put them out?” So blessed!

I’m thankful for all my extended family, including in-laws, who have stepped up to take our kids at unannounced times, with a smile and no complaints. My own sister has done this at quite inconvenient times, with no whining.

I’m thankful for our larger group of friends, most from our local church community, and many from my online community, whom I’ve never met in person. We’ve had sizable checks arrive out of nowhere, at just the right time. We’ve had small and large donations arrive to our PayPal account all through the past 16 months, each time a wonderful blessing. Deanna has had folks walk up and hand her a gas gift card, just when we had a long trip to UCLA coming up. At our most needy times, an army of folks from church made us dinners, saving Deanna time to do other important things for me and the kids. One friend even made us 5 or 6 freezer meals that only needed to be dumped into the Crockpot, to be a delicious meal.

No doubt, God has designed those things to happen at just the right time, and all these nice people were willing and able to give when they were called upon. Thank y’all so much!

I’m thankful for my medical team at UCLA, Dr. Gary Schiller and NP Karolina Faysman. They have been with me every step of the way. I first met Dr. Schiller the weekend I was admitted to UCLA, last year, after having been diagnosed on the Friday prior. He is wonderfully straight forward and always clear and understandable. From my scientist/physician, I need that. And Karolina is always patient and considerate in how she helps Deanna and I understand each stage, setback, and treatment.

And of course, I’m thankful for what is now an anonymous 28 year old woman, who was willing to donate some bone marrow to a man she’d never met or known. :-)

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2014 Challenge, Week 47 Nature & Wildlife – Litter & Trash

One of my first opportunities to get out and create an image for our weekly challenges at PhotoChallenge.org. This metal bar appears to have been an old sign post, in near a group of oak trees. We’re in Cameron Park, CA for Thanksgiving with my in-laws. This was taken on a walk with my wife.

2014 Challenge, Week 47 Nature & Wildlife – Litter & Trash

f/2.0, 35mm, 1/1600, ISO 200, Fujifilm X-T1

 

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Self promotion: Need a 2015 Calendar?

So, a few months back, my co-authors at PhotoChallenge.org conceived an idea for how they and our numerous participants could help our family out, by purchasing a calendar of  PhotoChallenge.org submitted images. So we announced the idea, asking for submissions. The four of us authors voted on our faves, and 12 images were selected. Jeremy, one of my 3 co-authors, designed the calendar, and last week we announced the final product on our blog. The profits are coming to me, to help Deanna and I with finances, etc.

(If you didn’t know, I publish a themed photography challenge blog. I have 3 co-authors that also contribute.)

As of today, at 10 am, 51 calendars have sold. I figured that I’d promote it here, for any of my readers who might want to help us out in this special way, and also get a calendar out of it. I know a few people have bought more than one, to give away as gifts. That helps us even more. Don’t sweat it if you can’t.

We love you all for you continued prayerful support!

dscf0981

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Been a while, sorry

Hello all! First I want to apologize for not writing any sort of update for a very long time.

When last I wrote, I had just spent a weekend back in the hospital with a little setback. Thankfully, I recovered and was sent home, and that’s where I’ve been since. I’ve had weekly, then bi-weekly clinic appointments, but no more admissions back into UCLA.

I started out on a ton of meds, and they’ve been slowly decreased. A few have even been discontinued. Other than that, my clinic visits have been consistently simple and boring, and that’s great!

Since August, we’ve continued to have several wonderful people who have blessed us with financial help that arrived at just the right time. It’s amazing how God continues to care for us, while I’m on disability. We are so very grateful!

One of the important emotional milestones I’ve arrived at, has been releasing the notion that I’ll have improvements from day to day. Yet on the other side of that coin I’ve embraced the notion that I can experience improvements from week to week. Once I embraced this, I found my spirits lifted quite a lot.

About a month ago, I was given permission to attend church again. That was a HUGE milestone!

You see, there are basically two things that have much room to improve. The first is my strength and endurance. The second is my immune system. When I received the transplant, and began to rebound, my immune system was more diminished than a new born infant. They had the benefit of their mother’s antibodies. So, early on, I was susceptible to the simplest of sicknesses. That’s why I spent that weekend in the hospital. And ever since, I’ve been slowly getting healthier and healthier. So once I had been well enough, long enough, my Nurse Practitioner let me start going to church again. Crowds are not a good thing for me, which is why I was denied the opportunity to attend the annual LA Auto Show. :-( Another tradition I’m having to forego, for now.

On the strength and endurance issue, is where I ask for the most prayer. I am not as responsible at getting out and walking, which I need. I was cleared to start cycling again, and I did my first ride a week or so back; 2.7 miles. Any riding is good riding! I’m hoping to start riding once a week, soon. My mileage will remain quite small, but even a short ride helps me out a lot.

I think that about catches y’all up with how my recovery has progressed over the last few months. Thank you again for your support and prayer!

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Going home…again

Ok folks, I spent the weekend in the bighouse admitted back in UCLA. As you may know, I spiked a fever last week. So they bring me down and immediately put me on antibiotics. When the fever didn’t break, they admitted me. It broke immediately, and I haven’t had a fever all weekend. So the treatment worked. There ended up being evidence of one bacteria when they cultured me. Apparently I did have something. So the meds continue until I’ve had a nice long course.

Today I’m being released, and headed back home. They’re continuing my antibiotics, which will be administered by a nurse at our home everyday, until it’s done.

Thanks for the continued prayers! We know we’re loved and prayed for and it’s such a blessing!

We cannot fathom how much we are blessed through this whole process!

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