Kristin’s Diagnosis: Lymphoma, Lung Cancer or Sarcoidosis?
I started this blog back up a couple months ago after years of silence because there were so many things that God was teaching me. We were in the middle of starting a church with a vision like none other I’ve seen before. I was excited to write about the ups and downs of birthing a millennial reaching church. I was excited to share leadership learnings I’ve gleaned from the corporate world over the last decade and thoughts on how that experience is translating in the church context. I was genuinely excited to write again. It felt like we were on the brink of something new and I wanted the world to hear.
I didn’t get very far with my fancy new blog because only weeks after starting it, Kristin got sick. Then she got sicker. Wait…is this a joke? This isn’t supposed to be what is happening in this season of my life!
I really didn’t think I’d be writing about my wife having an incurable disease anytime soon….but I was wrong.
The Road to a Diagnosis
It all started with fatigue, raised lymph nodes and itching in October. First the doctor thought she had lymphatic cancer. He sat us down and warmly – but clearly – told us that he was pretty sure that we were dealing with cancer. Symptomatically it was a perfect match and we made appointments with cancer doctors and everything, but after 2 biopsy surgeries, they could find no cancer. The surgeon calls us and tells us that in his 23 years of experience he was totally sure we were dealing with lymphoma. He added that he called the pathologist himself, because the results were hard for him to believe.
In the following weeks, things got worse and she began experiencing a vague shortness of breath. She needed to take serious breaks after doing simple activities. Things spiraled down until we ended up in the hospital the week before Thanksgiving. She was unable to walk, barely able to speak, running a high temp and struggling to breathe. We were struggling for answers.
One night the doctor pulled me out of Kristin’s hospital room and took me back behind the nursing station to a computer screen. He pushed a roller chair my way, asking me to sit. “These are pictures of Kristin’s lungs” he began. “Each image is a slice looking from the top.” I appreciated the kind and detailed explanation, even though I’m all too familiar with CT scans and such. He showed me an area he called “infiltration” in the bottom of her lung. There was a pretty clear picture of a dense mass with inflammation all around it. “This part right here” he said “this is why we think Kristin has lung cancer.”
Kristin has lung cancer?
I mean, the biopsy was scheduled for the next day, so I was trying to not put too much stock in the scans, but it sure looked that way from my nursing station roller chair. I couldn’t shake the thought that if we played this scenario out by the numbers – if we look to the statistics – my wife is most likely going to die of cancer in the next few years. I will never forget the feeling in my chest as I walked outside the hospital that night and wept. But the same night, while my mind was wandering into all the what-ifs, God was speaking to Kristin in a remarkable way. A way that burned a sense of peace into her heart that she hasn’t wavered in, to this day. I can’t wait to tell you that story!
The next morning as we wheeled Kristin’s bed down to the operating room for her lung biopsy, her smile was unburdened; her eyes sparkled with a penetrating confidence and her voice was quiet and comforting. I kissed her head, thanked her nurses and exited to the waiting room, a bit less comforted than she.
Three hours later the surgeon finds me in the waiting room. He grabs my arm and tells me that there were tears in the operating room as the pathologist announced to everyone after multiple biopsies he could find no cancer!
What he did find however, was something called non-caseating granulomas. This type of growth is indicative of only a few diseases and only one thing that matches Kristin’s symptoms. Kristin was diagnosed with an incurable disease called sarcoidosis.
Where are we today?
There is no cure for sarcoidosis and in some cases it is a devastating disease. More often though it is manageable with treatment. In many cases it can be kept at bay after its under control. The first few days seemed to feel like she was getting better. We left the hospital with some answers on Thanksgiving day and she improved for about a week at home – able to walk a bit, talk a lot and sleep normally. Unfortunately, the improvement didn’t last. Today, we think her lungs are probably improving but other symptoms are not and the doctors don’t seem to think they match the disease we thought we saw in her lungs. Her muscle fatigue and weakness is unreal; she has lost her ability to walk more than just a couple steps and sitting up for any amount of time is a real challenge. If you can imagine, we are eating with plasticware, because regular silverware is too heavy. We see new doctors each week and have a few key tests on the horizon. The lung doctor (who runs point on sarcoidosis) is “perplexed” with all of this. Thankfully my hope isn’t only in the doctors 🙂
In the midst of this, God is teaching us beautiful things. Some days our hope is renewed in him; other days though, are terrible and discouraging and we aren’t as strong. I’ll write some of those stories soon, but I needed to write today because we haven’t been so good at sharing the details and I’m hoping you can pray with me. Kristin is getting an MRI right now. I’m sitting in the waiting room of my previously frequented diagnostic imaging center adding the final words to this post. Sarcoidosis can impact just about any organ in your body, and with all that’s going on we have to make sure everything is clear in all her organs, particularly her brain.
God is good, he really is. Somehow this will work out for the good. It’s pretty cool to hear Kristin remind me of that. I do know that God uses these types of things for incredible good. I’ve seen it first hand and it has been beautiful – painful, but beautiful. And listen, it took Joseph like 15 years to figure out what God was doing behind the scenes in his Old Testament drama. We can hang in there at least till 15 weeks 🙂
Anyway, for now, I’m just asking you to pray with me. One day at a time. Really praying that there are no problems with today’s brain MRI. We are hopeful that this shall all pass soon. Whether it does or doesn’t, God is still good.
Wow, thanks for the update. Praying with you man.
Lets pray soon. I have some time to help out.
In Jesus name,
Marie A Deane
Thank you for the update Darren. Praying daily for Kristin and your family as well.
Thanks for sharing… my heart is heavy. Praying!!!!
You guys are in my prayers. I know God is so much bigger than Kristen’s disease. I’ve seen 1st hand how he has continued to amaze the doctors with my mother-in-law’s stage 4 lung cancer. They told her she’d be lucky to live 1 more year & it is over that & her tumors are more than 3/4ths gone. Hold tight to His promises.
Wow! I will be praying my friend. God has a reason for all things, as you know. I know this isnt easy to go through again. Thank God for His peace and loving strength.
I’ve been praying for Kristen everyday, and will continue.
Sorry to hear about the struggles you two are having. I will be praying for Kristen and you Darren.
We don’t really know why these things happen but we do know God loves us and will be with us as we go through these unthinkable trials, As you know. I will be praying. God bless you both.
Darren, I am so sad. I feel kicked in the gut for you. : ( I will be praying.
Darren, I have not seen you around in awhile. I will be praying for you and your family. Please keep me posted.
My family and I are praying for you! How could this be happening?
Darren praying for your beautiful wife and family my husband too has sarcoidosis we found out in September when my husband slowly lost his ability to walk . So know that I will keep your wife in prayer.
Praying…God is in control…
Will be praying?
Darren – I amazed at your faith! I was in tears reading about Kristin. Lisa and I will be praying intently. I have known you from a distance and watched God in you. Hugs from me my brother.
Eighteen months ago I was diagnosed with stage IV cancer. I was told two to three years. My faith has been unwavering by the power of the Holy Spirit, yet I know it is God who must be glorified. I’m ready for His will. For you I pray for a miracle, that God would make Himself known as Healer.
Please send Kristen my love – I will be praying for Her & You and your family. I am off until the Third of Jan so if you need help with the girls or help for Kristen please let me know – I would love to be there for all of you – xoxo ?
~ Eve ~
Thanks so much for sharing this hard and hopefilled story!
Darren, praying for you all. Will continue to keep your wife lifted up. We serve an awesome God. His mercy is new every day!!
We are thinking of you and your family.
Praying for you all. God is greater than all things we can comprehend! Stay strong in Him!
Life throws us many different challenges. Some are more difficult then others. God promised us that He wouldn’t allow us to go through something that we couldn’t handle with His power running through us. I’ll be praying for you and your family. I can’t imagine how you must be feeling, but I see your faith in God shining through. My heart goes out to you, and pray for God’s strength and peace to envelope you in your time of need. Hugs, and more hugs!
Just prayed and will keep praying. According to Facebook we have 13 mutual friends. I do no know if we have met but you and your family will be bathed in prayer
Darren and Kristin and beautiful girls,
Praying for you all. Darren your blog really caught me off guard, so many thoughts are flying through my head right now. I can sense your optimism and I’m standing with you praying and believing in Our God and His abilities to bring good out of every situation.
Has lymes disease been considered? Your story sounds very similar to someone local in PA who eventually found the root to her symptoms and near death state to be lymes. Late stage lymes requires a very specialized doctor to diagnose. There is one in Lebanon, PA- Dr. Noonan.
My wife & I continue to join you, your precious friends and family in sincere prayer for Kristin, you and your girls.
It is at times like these I dream of being the kind of Man of God who could wave a hand and speak a supernatural blessing in the name of the Lord that would cause all sickness and suffering to cease.
We are praying for all Kristin and your family. We are encouraged by your incredible faith and your honesty. Yes God is good but yes my heart does break for things that I will never understand. We love you. God does have a beautiful plan.
Dr Sue Massie ND
Please contact me for further information.
Darren and Jane Ross
Darren-Both Jane and I will be praying for Kristen and you. We know that God has everything under his control and we know that your faith is strong in Him. Let us know if there is anything we can do to help. We love you!
Thank You for sharing with us. We all love you guys and will be praying for answers and healing.
Darren, So sorry to hear you and Kristen are going through this. My heart is heavy and I have no words except I will keep your family in prayer for peace, strength, and healing!
Paul and Cathy Emery
Darren – our prayers are with you and Kristen. There are some things in life that we are given without clear understanding. However God is faithful and promises to be there for us in good and bad times. We know He will never leave us or forsake us. Webjust pray that God continues to give you both the strengh to endure what ever He has in store for you both.
It has been a while since we talked. I’m so sorry to hear the news about Kristin. I will definitely be keeping Kristin, you and your whole family in my prayers.
Darren, I’m stunned by all this. So sorry Kristin has this disease. Nick and I will be praying for you all. God is in control! We love you!
Wow, I had heard some vague rumblings about this but had no idea what was really going on. Our hearts and our prayers are with you. It just seems that God must have some incredible work for you if the enemy is seeking to throw so much at you. Be of good cheer!
Greater is He that is in you than he that is in the world.
Praying for all of you!! Have Kristen or yourself reach out to me with anything I can do for you guys.