10 Things Keith Did to Keep Us Afloat

At the Residence Inn during November or Northwestern Memorial Hospital during December…

10. He spent hours creating an entertainment center (basically getting the Apple TV, Xbox and internet FUNCTIONAL)! It was his mission. From NetFlix to HBO Go, iTunes, Pandora, Amazon Prime, and dozens of Breaking Bad DVDs, we pretty much had every show/service anytime. Continue reading

GET THIS

MOMandDAD

My parents flew in today, and were very cautious to not catch anything on the notoriously germy plane ride. Thanks, Mom & Dad!

[Keith is flying home tomorrow to be back for Christmas Eve (kind of the Super Bowl when you work at a church so he totally has to be home)].

AND GET THIS… Part I: I’ve been quietly aware of having stopped using my left hand/arm for anything (Had a flare-up earlier this year when I lost the feeling & coordination there). I was painting yesterday & using a messy/painterly style.. And just started precisely smearing w my left hand.. Regular brush stroke w my right and smear w my left. It was like my whole arm woke up from a coma. Was so blown away and feeling like a true miracle. The first “whoa”

Part II: When we were telling my parents about this tonight I remembered another thing from my flare-up earlier this year… Based on where the new lesion was in my MRI at the time, my neuro showed me how when I quickly dropped my chin to chest I’d get an electric-shock-type of feeling down my spine + left arm. [Been that way ever since, of course #mssucks]

But tonight I couldn’t make that happen. No matter how many times or how quickly I did it. It’s gone. What a tangible display of healing… I’m still processing. And how could you not cry, explaining that to your beautiful, also-teary-eyed parents?

Go-time

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Ok fam it’s go time..

My blood counts started rising (a big celebration for us stem cell patients!), so can you join me in praying specifically for my WBC to shoot all the way up to 1.0 by sometime tomorrow?! That’s what is necessary for my discharge, which we’re all (us & medical team) hoping/expecting to occur tomorrow. But it all comes down to that WBC getting to 1.0!

We’re Back – [Guest Post from Keith]

Well we’re back in Chicago. And it’s go-time. The last few months have felt like go-time, but this really is go-time.

After a much-needed quick trip home for Thanksgiving, Emily and I arrived back 6 days ago. 5 of them, she’s been in the hospital. She just finished her 4th (and last) day of chemo yesterday. Her last ATG treatment was overnight last night. ATG is a heavy-duty immunosuppressant. And today is the big day where the 32 million stem-cells will be reintroduced to Emily’s blood. From there, the docs will monitor her blood count, give her transfusions as needed, and wait for her nearly non-existent immune system to show some life again.

The main thing people have asked is, “How is she doing with the chemo?” I’m thrilled to report that outside of some fatigue, she hasn’t experienced many side-effects. She’s had very little nausea, which has been quickly treated by meds (and Queazy Drops from Tamara). The docs say that the chemo affects everyone differently, and no doubt God’s grace has been shown by how it’s affected, or not affected, Emily.
Two last things before I go:
1 – Emily is handling everything like a pro. There is a lot of resting and sleeping, but as you might expect, her joyful attitude and wackiness (in a good way) have brought smiles to all the nurses and patients we come in contact with. Her enthusiastic attitude has also kept her spirits positive in situations where most people’s may not be. We know this is because of God’s peace and strength, and through the prayers of our friends, family and even strangers.
2 – If you know us well, you know that Emily and I are both talkers. We like to have fun and are never short on words. But honestly, when it comes to the support and love we’ve been shown by everyone, we really don’t know what to say. We have talked many times about how amazing it has all been. From the outpouring of financial gifts…to the hourly prayer times…to the texts just saying she’s being prayed for…to simply reading this blog…we know that it’s all provision from God and because we are well loved. So thank you.
Please keep praying that Emily would respond well to the rest of the meds, transfusions, treatment, etc. She already has some ideas and plans for blogging once she feels better. Comment on her blogs and let her know that you are reading.
Thanks!
Keith

Total Stem Cells & Why We’re in PA Right Now

2 million stem cells were needed from Thursday’s harvest. The # of my stem cells collected was 31.16 million! Crazy…
The fruit of 6 days of waking up at 6am to do 2 injections of the growth factor Neupogen—to help my stem cells grow and move from my bone marrow out to peripheral blood.

The side effect of Neupogen they warned us about was “bone pain.” That was vague and kind of creepy sounding.. Not descriptive enough to be helpful in knowing what to expect. Well, we found out what it’s like and there’s really no good way to describe it! Some people don’t get it as bad as others and apparently there’s a correlation between the amount/degree of bone pain to the # of stem cells collected. That makes sense because by the time Tuesday rolled around my pain was through the roof. In a 31 million vs. 2 million kinda way :) So that validation was nice for some reason.

Since Thursday I’ve just been continuing to process what happened and what that was like. Lots of you have said things about how strong I am and I really appreciate the encouragement because it’s made me realize it doesn’t make any sense. God has given me clarity about it. See because I never would have been able to endure that myself.

I’ve thought about that some and God gave me some clarity on that—the

The Dreaded MRI

Our first week here in Chicago consisted of basic medical tests to make sure my body can handle the transplant. Keith and I spent the week running around the hospital and various buildings each day. I had a bunch of tests on Thursday–MRI, chest x-ray, dental eval, labs & EKG. It all started with the worst–the MRI. Well, technically 3 different MRIs, so about 2 hours total.

Over the years MRIs have become really difficult because it causes a tremendous amount of pain trying to lay perfectly still for an extended period of time. It’s the worst. The technician often tells me I’m moving and they have to repeat a scan, (or 3 :/). The reason I move—and I try my very best to NOT move at ALL—is because my body gets so stiff and tense trying to lay perfectly still, and the pain slowly builds to new levels each until I can’t take it anymore.

I’ve developed a variety of methods to help me cope through MRIs—basically anything to distract me from the pain… Listening for all the different tones. It’s interesting to listen to both the wretched dissonance and the quirky harmonics of the machine. Also, the incessant—and nearly violent—rhythm of magnets clanging around for the various scans. I try to find some sort of imperfection from my span of view inside the machine. There’s usually a scratch or smear you can find, or some sort of mark on the interior surface. You can try to imagine what different shapes the mark could be, like you would with clouds in the sky. Really, MRIs are awful for me, no matter what I do.

But this was unlike any MRI I’ve ever had!

When they were escorting me back to radiology the technician explained I’d be able to listen to music during the MRI scans. (Uhhhh, what?! HOW!) He explained they had a pair of all plastic headphones that doesn’t interfere with the scans and allows them to play music for patients. (!!!!?!??!?!?!?!) When I was all set up with my IV, a blanket and the headphones, the bed started receding back into the machine and he asked what Pandora station or artist I wanted to hear (!!!!!!!). I said, “Yes, an artist–Keith Elgin.” The MRI machine was up and running a minute later with its raucous noises.

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After another minute the voice of the love of my life floated above reality as I heard “Stronger” start to play through the headphones. I lay there in this entirely surreal moment, filled with total peace and comfort. I thought, “Wow. This is happening.” By the time it really hit me around the first chorus, tears were streaming down the sides of my face. These were the kind of tears that didn’t stop—the experience of being so overwhelmed by emotion that your body takes over and decides to cry, without your knowledge or permission!

Then I was laughing about how I couldn’t stop crying,
and how unbelievable all of it was…

 “Stronger” from Our Hope [Live] by Keith Elgin.

A few songs later was “Dance, Dance, Dance,” at which point I was grinning ear-to-ear inside that machine… I was picturing Chloe, our fabulous 4-year-old niece, breaking into super-energetic dance and singing along! Such happiness :) She calls it “The Keith Song.”

At one point (well actually I think it was 4 times total) the technician buzzed in over the speaker saying he had to repeat some scans because I had been moving. I always feel bad about that because it’s annoying for them and it takes longer, but I really do my best. He got more grumpy each time, so I felt more and more like a fool, apologizing. Then it turned out he had to leave and got another radiologist to cover for him because it was running into his dinner break. So when they wheeled me out of the machine to put the contrast in my IV, this new radiologist greeted me and explained.

She was cheerful and kind, with a gentle spirit. She took care to update me between each of the scans, encouraging me and saying how long the next one would be. She also gave me breaks and explained what parts of my body I could move. She regularly asked how I was doing.
It was like an angel had arrived to run the MRI.
And her name was no coincidence—Gloria—like my mom.

So I got to finish up this 2-hour MRI listening to my husband sing about God and feeling the loving and caring presence of my mom.

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Some thoughts & reflections from inside the machine:

Wow…
This is unbelievable…

…fragmented thoughts of bewildered gratitude, trying to wrap my mind around the astounding love of God…

Is this real? This is really my life?
I can just say my husband’s name for a Pandora station?!

And, go out to that same guy in the waiting room, who’s eager to see me and find out how this one went?
The waiting room of Northwestern Memorial Hospital…
But this time we are getting the transplant?
It’s really happening…

And everyone we know is in it WITH us…

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From all around the U.S., hundreds of our best friends, family members — and many we’ve never met – helped us get here.

And made all of this possible.

By the provision & crazy love of God.