Our-Hope-Web-Slide
Awards
SocialMediaBANNER

multiple sclerosis

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.

11391117_10102272404879357_1700128767896532993_n

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.

 

Screen Shot 2015-12-10 at 1.09.32 PM

Screen Shot 2015-12-10 at 1.15.21 PM

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.

 

Screen Shot 2015-12-10 at 1.08.58 PM  Screen Shot 2015-12-10 at 1.09.18 PM

 

 

 

 

 

 

 

 

 

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.

Screen Shot 2015-12-10 at 1.16.58 PM

The Windy City (and by windy I mean freezing)

It’s cold here. Emily and I have been to Chicago a few times now for multiple doctor visits and tests, but typically it’s in the Spring or Summer. I’ve heard this 25 degrees with ice cold wind is nothing compared to December – February. We take a cab when we go out together, but when I’m out TCB, I just walk. It’s cheaper and it gets me a little extra exercise carrying the groceries through the streets of The Windy City. So yeah, the chapped lips won’t quit. But overall, it’s been great to be here with Emily, being a support and encouragement to her.

As for the medical stuff…Emily is handling everything like a pro. Her first dose of chemo wiped her out, energy wise, as she slept for almost two days straight. But for the most part, she avoided the worst momentary side effects. She has been herself everywhere we’ve been, and people love that. It seems that most people at a hospital are grouchy or depressed. She might have some anxiety but is generally joyful and you can tell it brings joy to all the people that meet her.

She’s started her blog and you’ll get a peek inside what it’s like for her if you want to check it out. She already has posted some great stories and photos. Check it out HERE and comment to show her some love!

Thanks for reading and loving us!
Keith

 

2 Months in Chicago

chicago

So here we are.

If you follow me or my wife on any social media platform, you’ve probably heard by now that we are in Chicago for the next couple of months as she undergoes an autologous stem-cell transplant to treat her aggressive Multiple Sclerosis. (Autologous means they take her own stem cells, separate the good from the bad, and reinfuse the good ones) This will include a lot of poking and prodding; chemo; nights in the hospital; walking everywhere; etc. Basically a huge disruption to the comforts we have in life.

Earlier this year when we were planning the live worship record, which released last month, I was simply following what it seemed God had next for me as a worship artist. As the process unfolded, it was clear that the theme behind the project was God being our hope in the ups and downs of life. In the midst of the darkness, He is light. (Title: Our Hope) But Emily and I didn’t know this stem-cell transplant was also in the works. So somehow, God worked all of this out and worlds are colliding here and now.

I honestly feel like God is telling me the Christian singer guy to put my money where my mouth is. It’s one thing to sing about God bringing hope and peace during the rough patches of life, but it’s another thing to live it out and let people see it. And he’s telling the husband and personal me, there is no separation. You are you and I and Me no matter what’s going on in life. The person you are sitting at home watching Netflix is the same you singing out the name of Jesus with a guitar strapped to you. I’m still figuring out what this all looks like…

So here we are. In the midst of the muck. Trusting in God. Placing our hope and trust in Him.

I’m going to keep updating my blog to let you know what’s going on here in the Windy City. And hopefully use this season to encourage you, and us, to keep looking for God in the midst of the chaos. He is at the center of it all.

 

ps. You can also follow Emily’s Tumblr as she’ll be updating it as time goes on in a much more creative way than me.