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?

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

Appt at Rush University

Screen Shot 2013-11-09 at 7.09.23 PMI‘m always instructed to wear a head scarf and paint my nails black before my appointments at Rush, in order for the neuro on the other side of town to stay blind to whether or not I was in the treatment arm of the study vs. the control arm… Meaning, whether or not I had lost my hair or had obvious signs on my nails from undergoing chemo.

I’ve been a patient in the Multiple Sclerosis stem cell transplant study at Northwestern for over 4 years (awhile after we heard about it on the news), but I was randomized right off the bat to the control arm, so we flew right back home.

BUT a patient has the potential of crossing over into the transplant/treatment side of the study if his/her original EDSS score (scale that assesses the level of disability) increases by a certain amount, AND stays that way for at least 6 months. We all knew my score would be bad enough this go-‘round, but still, it all officially hung in this morning’s appointment. If the doctor assessed my score at the same level as in 2009, we would come home. Again. And it would be the biggest “never mind” of our lives.

I sat there answering his questions, doing the various exercises for him to examine my level of disability, and listening to him explain to the interns why I wasn’t capable of doing certain, very basic movements…
It totally caught me off guard when I started crying. It’s like my soul alerted my mind, “This is huge, Emily. You guys have been trying to get here for 4 years, and it’s happening right now.” The reality of it—and a sense of peace—overwhelmed me.

Dr. B handed me the sheet of paper with my score, which was more than high enough. Double my 2009 score. So it’s all a “go.”
“Full speed ahead,” as the nurse said who called me later to find out the news.

I’m full of gratitude tonight—gratitude in too many directions to process, so, now it’s time to sleep :*)