Karl’s Story

Site created on July 14, 2022

On May 31, Karl started experiencing mild abdominal discomfort which increased over time and sent him and Jacki to the ER in the early morning hours of June 6. Due to that day being a national holiday in Malaysia, no radiology was available and the ER doctor prescribed medication for gastritis and possible ulcer. Karl and Jacki traveled to the US on June 11 but the abdominal pain persisted and the medicine stopped working. He finally received stateside insurance, and although feeling better,  went to an urgent care facility on June 24. He was diagnosed with acute pancreatitis with a pancreatic tumor and liver lesions. 

The news turned our world upside down. On Tuesday we  had bought some furniture, on Wednesday a car, on Thursday we signed on a house, and on Friday he was diagnosed. It's still hard to comprehend. If you know Karl, you know how healthy he lives his life. There is no cancer in his family. We just moved across the globe and he was so excited about his new job.

Learning about a significant diagnosis in an urgency center without a primary care physician or follow-up is extremely difficult. We were supposed to receive phone calls for further labs and biopsies but didn't hear anything for several days. We finally secured an appointment for an endoscopic ultrasound and biopsy for July 7, and with the help of a new friend, a visit with an oncologist that same day. It seemed like an eternity to wait! We did the pre-op physical, Covid test, and tried to navigate a completely foreign medical system in a "new" country.

On July 7, Karl underwent the endoscopic ultrasound and biopsy and received confirmation of pancreatic cancer with metastasis to the liver. That same afternoon we had an appointment with a doctor at Minnesota Oncology who confirmed the diagnosis of pancreatic cancer stage IV. He suspects this is an aggressive cancer that started about 6-9 mo's ago and ordered a variety of labs which consisted of traveling to various specialist centers around the Twin Cities over the following 7 days.

On July 14,  we had planned to begin his first round of chemo only to find out that Mayo had received a referral for Karl's case. We delayed treatment for a week in hopes Mayo would schedule something but the following day we learned there were no appointments available until September.  We are disappointed and discouraged but will continue to pursue Mayo for the future. For now, we will travel to Minnesota Oncology for his first round of chemotherapy on Thursday, July 21. The plan is 3 weeks of chemo with one week off for 4 cycles until October when it'll be reevaluated.

You can help by praying. Pray that the tumors will respond to the chemotherapy and begin to die and die rapidly. Pray that the symptoms from chemo will be mild and that he can continue doing what he enjoys, working at school and being with friends and family. Pray for health, weight gain, and no infections. Pray that we can solve the issue of insomnia which has plagued him for weeks. Please pray for protection from spiritual attack and discouragement. Pray Mayo will take his case . And please pray for hope and that in some way, God will turn Karl's story into a miracle.

If you're someone who wants to help in practical ways, Kassy and Mikaela set up an Amazon list called "Survivor 54" in honor of their dad's favorite reality TV show and the season for his age. You can be on "Team Karl" and help with practical chemo needs by following this link - https://www.amazon.com/hz/wishlist/ls/3FT0WB3N8RJ6I?ref_=wl_share  (A drop down menu will allow you to see priority items.)

If you're someone who enjoys research, we are looking for a few people to gather data. The average age of pancreatic cancer diagnosis is 71 - a stage of life in which most people have retired. We are at a disadvantage in that regard. Only about 3% of people with stage IV pancreatic cancer survive to 5 years and we want to be on the right side of those numbers! We need help to find the best information to fight this battle. We've set up a Google folder (https://tinyurl.com/2p9ca7r4 ) with 7 different categories. You can be on "3% to 5" and help us gather information without overwhelming Karl's email inbox.

Thank you for joining us in this challenge. We need you now more than ever!

Newest Update

Journal entry by Jacki Steinkamp

This past Tuesday was Karl’s 56th birthday. He wasn’t here to celebrate it with us. Some people say it’s his first birthday in heaven but I doubt it matters there. It matters to us, however, because we’re still bound here, on earth, in the present, without him. 

We chose to continue Karl’s tradition of giving gifts on his birthday. A precious group of ladies from church made teddy bears from Karl’s childhood t-shirts that his mom had saved in a grocery bag out at the farm. Tied with ribbons with his initials on their feet, they sure looked cute! I never could get the stains out that had set in permanently from years in an old missionary barrel in the shed, but I suppose the bears “bear” the mark of his DNA.

For his birthday, the kids also gifted each other something memorable and they got me a journal for writing letters to Karl. We went for dinner and shared a video call with Mikaela. That was Monday night, and for the remainder of the week it was emotional, sentimental, and we all felt a little raw, emotionally exposed. Our Dalat family remembered and honored Karl on his birthday by planting a tree, burying a little urn of his ashes, and installing a marker in his memory. The tree looked festive and cheery all tied up in purple streamers. Staff and students wore purple and all around campus were big purple ribbons and bows. Like a dear friend said, “Karl always liked a good party.” He really did!

On Monday night, we started getting texts and photos from family and friends who went out for Dairy Queen blizzards. Karl loved Reese’s chocolate peanut butter and whipped up with ice cream, all the better! Many wore purple and stood with us on that day in solidarity for the meaningfulness of his life, physically declaring he has not been forgotten. It was comforting to us and I’d like to think it’s a simple tradition we could carry forward.

His birthday brings back sweet memories and fondly recollected stories. He was fun and full of life and humor. He lived his life in a good mood. He fulfilled his earthly roles and relationships with intentionality and authenticity. We cherish all those things. With the remembering, celebrating, honoring, comes an accompanying sorrow and deep sense of loss. We missed him more acutely, more deeply, his absence stark and painful. It’s a strange feeling for a celebration to hurt so much. As a result, it brought about unfamiliar emotions of him spending his first birthday in heaven, those celebratory feelings somehow soured. Oh, what we wouldn’t do to have him for mere seconds! It may seem illogical to you, or you may judge us for it, but we craved a sign, a dream, a vision of where he is right now. We wanted him to be with us.

In several articles and books that I’ve read, grieving people are sometimes comforted by signs they believe are from those who have passed on. Some of the stories are plausible, even credible, seemingly orchestrated rather than coincidental. It’s yet again one of those experiences that cause you to feel like if you don’t receive those signs, that somehow you’re doing something wrong. Tim Challies, author and pastor, talks about his experience when others ask him about heavenly signs from his son. He said that he neither looks for, expects, even wants those signs. He writes, “I understand the impulse to look for a sign and I understand the comfort that can come when we believe we have received one. Death and all that comes beyond this life is a great mystery. Though we all go that way, none return to describe it, none make their way back to assure us that heaven is real and God’s promises are true. Our loved ones cross the river and are lost to our sight and our hearts burn to know that they have passed over safely. It is natural, then, to hope for some kind of information, to seek some kind of a sign, to know that they are okay.”

To do so, we have to rely on truth and not our feelings. We have to possess Hebrews faith. The same faith that guarantees salvation guarantees resurrection. It also doesn’t mean that a loving God won’t provide some special encouragement to us, or that stories from others aren’t somehow real. Even our desires can bring about interpretation of circumstances in such a way that gives us encouragement. For example, I know that Karl didn’t become a star, but when a friend shared that a star lingered long past daybreak over Dalat School that morning, as he took his last breath that evening stateside, it was a lovely, encouraging thought. When his dear friend took his little urn of ashes for one last tour of the campus, I’d like to think he’d be pleased about that. It made us all smile to know and see photos of the morning of the ceremony as it dawned with beautiful shades of purple. There’s no biblical reason for thinking such, but there is an element of human encouragement. And when you’re grieving, every morsel is precious.

So as Karl’s birthday came and passed this week, we were certainly very mindful of earthly reminders and markers of his time here. Scripture is vague on the exact order of events, likely intentionally as that should not be our focus. Even books about heaven struggle to define what happens immediately after death, providing little comfort for that powerful quest for understanding that accompanies grief. What we do know is that in Luke 23, the thief on the cross said to Jesus, “Remember me when you come into your kingdom.” And Jesus replied, “Truly I tell you, today you will be with me in paradise.” From Luke, we also know that Lazarus was ushered into heaven by angels. So our assumption is therefore immediate presence with Jesus. Yet our brains sometimes struggle with the metaphysical aspects of the moment just post-death, and our finite minds want assurances.

In his extensive research and writing on heaven, Randy Alcorn refers to the present, intermediate heaven that is temporary until earth is restored. It’s possible we don’t understand the physics nor the measure of time in how that all works. He writes, “As Paul tells us, though we naturally grieve at losing loved ones, we are not to ‘grieve like people who have no hope’ (1 Thess. 4:13). Our parting is not the end of our relationship, only an interruption. We have not “lost” them, because we know where they are.”

A few months ago, I was watching a documentary about the biofluorescent flora our eyes cannot see. Since we cannot see in the ultraviolet spectrum, there is a world outside the scope of our natural eyesight. Scientists have used special equipment to view this unique spectrum of creation and it provides a special perspective on nature and how there are worlds hidden from our human senses. How much more would that be true of life after death if we cannot see the veil that separates the two?

We may never fully comprehend the complexity between life and death and we may never feel satisfied in wanting to know and understand more. Neither might we receive comforting signs or earthly assurances of Karl’s current, immediate presence. It’s hard. Having faith is hard. But knowing it is indeed a temporary interruption from our eternal reality is a comfort. We are simply and sadly on the side where the wait feels long and the separation most pronounced, unable to comprehend the constructs of time and laws of physics that allow for Paradise. So in the meantime, our responsibility is to look to scripture, not for heaven’s descriptions, but for direction on how we live until then. We should live like we’re homesick for Paradise, like we’ve been left behind. And when someone you dearly love dies, that longing becomes palpable and so very, very real.

Happy birthday in heaven, Karl. We miss you immensely and can’t wait to see you again!

 
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