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Emily’s Stem Cell Story

Two years ago today, Emily received a re-infusion of the stem cells from her bone marrow and completed a 2-3 month long process for reseting her immune system. That was the end of a 5-6 year period of struggles/challenges/trials that came with an MS diagnoses on her 21st birthday.

Because I’ve only met many of you within the last two years, you probably had no idea that any of this existed to us. So I want to give you a quick rundown of our journey.

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Two weeks after we got married, on her 21st birthday, Emily was diagnosed with multiple sclerosis. MS is a disease that is unpredictable. There is no known cause and it acts differently in different people. Within the first year, it was clear that Emily had an aggressive form. The doctors worked hard to keep her as comfortable as possible, but we knew that we were basically just managing the disease and the future was unclear. She went through periods of not being able to see, speak, walk, feel her hands…basically her body wasn’t working at all. Through this time period, we tried to remain positive. It was difficult to always be on the same team, but we always found time to laugh and keep things light.

In 2009, Emily was admitted to a clinical study at Northwestern Memorial Hospital (Chicago) where they were resetting patients’ immune system through chemo and cryopreserving stem cells. While she was admitted to the study, she was randomized to the control arm, which meant no stem cell transplant. We were disappointed, but it was only by the grace of God that we felt peace. We had learned that ultimately, we could only do our best at the legwork, and everything was out of our hands.

The disease was up and down for a few years. She continued on the most aggressive medicine possible. The doctor’s were concerned that because she was so young, she’d lose many of her basically abilities for the majority of her life. That became real in June 2013 when she could no longer walk and ended up in a wheelchair. I called Chicago to update them, and they suggested she come for a follow up appointment. They said that because she was so bad, there was a good chance that they could cross her over to the transplant side of the study. We came back to Virginia and prayed and trusted that this was what was best.

 

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So in October 2013, we wheeled Emily to Chicago (not all the way, just from the airport ha). On December 22, she walked out of the hospital. They took stem cells from her bone marrow, gave her chemo for five straight days, and then reinserted her stem cells on December 10, 2013. Within a day, she was already improving. Her hands were functioning normally. She walked around the hospital floor and re-learned how to keep her own balance. She’s been on no medicine. She exercises. She cooks and cleans. She goes to the mall. She drives. We go to concerts. Etc. These are all things that most people do, that she could not.

 

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That’s an extremely quick version of the story.

We could not have done it without friends and family who so graciously prayed daily, sent encouraging words and gave financially so we could afford to make all of this happen. But most of all, we never lost hope. We believe that nothing happens accidentally. After going through the process in 2013, we realized that we were not ready the first time around. 2009-2012 prepared us for what was to come in 2013. Something crazy happened through this process…we experienced true joy. In a season that would seemingly be chaotic, we experienced very real peace. In fact, while many things were difficult, we look back on that season of life with reverence. It was an adventure that has truly given us a new perspective on our life, and of those around us. We may be strong people (and Emily is especially strong), but there is no way we would have kept the positive attitude, maintained joy and hope, or experienced the peace based on our own understanding. Our experience revealed to us that the hope of Christ and the hands of God are enough to carry anyone through the darkest times and to celebrate the best ones. We know that not everyone gets this chance. And we know that even when it didn’t seem like Emily would, we experienced God being good to us. We are thankful for the transformation and new beginning that we were given through this resetting of Emily’s body and the new life we’re given daily because of God’s grace.

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The official Top Ten Late Night Thoughts of an Insomniac Worship Leader During Easter Week

So as you would expect, the two busiest weeks of the year for church staff (especially worship guys) are the week prior to Christmas Eve and Easter week. This year we added a Easter Saturday night service to try to clear out space for the CE visitors who will undoubtedly come to the 11:15 service on Sunday morning. Did Jesus really rise after 2.5 days? No, but whatever. We can celebrate on Easter Saturday just like we should celebrate His aliveness every day. So it’s 2:30am. I’m leading a service tomorrow night, Friday night, Saturday night, and 3 on Sunday. So here are the Top Ten Late Night Thoughts of an Insomniac Worship Leader During Easter Week. (feel free to add your own)

10. Did I finish the creating the slides?

9. Should I save the real guilty-type songs for Good Friday or use them for the Communion service on Thursday?

8. I hope the drummer gets there on time…the last thing we need is a soundcheck running up to the service countdown.

7. Wait, are we singing Nothing But the Blood Thursday or Friday…I can’t remember. I think it’s Friday, no wait, it’s tomorrow. No it’s Friday, right before Lead Me to the Cross. Yep, Friday. Wait, is Lead Me to the Cross on Thursday or Friday?…

6. I wish I could stop thinking about all of these details that will work themselves out and focus on Christ.

5. Wait, did I finish creating the slides?

4. Maybe we should shift the song order so the powerful response song can become the powerful sermon set-up?

3. Are these song possible song order changes the Holy Spirit? or am I overthinking?

2. I wonder if other worship leaders have these same problems or if it’s just me.

1. I’m taking Monday off to make up for lost sleep!