My dad passed away nine months ago. I’d love to tell you all about how amazing he was, how wonderful of a life he led, how he was the best person I’ve ever known, but it’d take a book. This might end up being a book just with the simple story of his 3 1/2 month ordeal.
Let me tell you about the year before he died. He started out 2019 going on a skiing trip. He did a lot of riding his motorcycle, he went biking, he cruised around on the jet ski up at our cabin in Michigan, giving the kids rides. He wasn’t sickly. He laughed a lot, he joked around a lot. He kept life for everyone around him enjoyable. Everyone close to him, knew they were deeply loved and cared for. That was truly how he lived his whole life.
He had achieved his dream in successfully inventing a product and building a business from the ground up, working from home. It was amazing and I was so happy for him. My kids and I travel to Minnesota from North Dakota very frequently and he was around for us all the time. He read the kids books, rocked the youngest ones to sleep at night, took them out on little runs to the store with him. They loved him to the moon and back. ￼
December 2019, he was getting a bit irritated of having a full feeling in his stomach that had been nagging for a couple weeks. He finally decided one evening to head to the ER. He was there for almost a week. Test after test after test. They found a blood clot in the main artery to his liver, astronomical liver panel numbers, some questionable spots on his liver, adrenal glands, and one small one on his lung. They told him that one wasn’t problematic. He’d had a physical and blood work done in the summer that came back without any major issues. This was extremely unsettling to me regarding getting health checkups. I always thought those helped make sure you didn’t have an illness that was killing you. Not so. The blood work and health exam didn’t give a clue he’d be gone in 8 months.
December 24, 2019. Christmas Eve. He was diagnosed with cancerous lesions on his liver after the liver biopsy results came through. This was after an MRI, CT scans, and PET scans. The biopsy showed they were secondary spots, meaning he had cancer that had metastasized. They wanted to start chemotherapy immediately and meanwhile, continue searching for a primary cancer. Cancer cannot be treated correctly without knowing the primary. As his doctor put it, they were experimenting. They never found it. He was diagnosed officially with stage four cancer of unknown primary. This is very rare and according to research, about 2-5% of metastatic cancers are of this type. The survival rate isn’t good.
A couple days after Christmas, they called and said he had a spot on his brain. They were going to do radiation therapy in January to get rid of that. That did go successfully, and at the end of March, they did another assessment and it was still to their liking.
My grandpa, my moms dad, passed away January 5th, shortly after my dads diagnosis. This was hard on us all. He was a very big part of our life and the first close death to most of us in my family. I drove to Minnesota with my kids the day before the funeral and booked a hotel at midnight after the ten hour drive. The kids had been sick for the past week with high fevers and coughs and I’d been talking with my dad about whether I should even come as I didn’t want him getting sick. He’d had one round of chemo so far. But he convinced me to. I couldn’t miss my grandpas funeral.
My dad didn’t want to miss seeing the kids, so they came to visit us at the hotel in the evening after the funeral. I was heading back to North Dakota in the morning, very short trip. My dads voice was softer, more quiet, than usual. I guess this was an effect of the chemo. I had told my kids, who were no longer running fevers, if they had to cough, make sure they covered their mouths and were nowhere near my dad. They’d run across the hotel room to the corner if they had to cough. My dad thought this quite funny. He spent a lot of his life amused. I cannot tell you enough, he just made you happy being around him. I have yet to find a person who can do that like he did.
Later that month, he had another testing round, this time using a camera down his throat to get imaging of his entire stomach and esophagus area. They came away with a hiatal hernia and many tiny ulcers, but no primary cancer. That was the last of their testing, they’d checked everything in their power. The only option remaining, seemed to be that his immune system probably killed off the primary cancer but not before it managed to spread.
The unknown primary diagnosis from his liver biopsy continued to bother me. I spent countless hours well into the middle of the nights researching cells and the way biopsy’s are collected and reviewed, and what they look for in those. I think in a way, this was my way of coping and probably being slightly in denial. But the thought of losing my dad was impossible. So I threw myself into medical research, determined to find a way to save him.
His chemo continued, he ended up in the hospital starting at the end of January, and it seemed to happen after each chemo treatment. Really, mainly just a fever. I did some research on that too and it seemed to be occasionally normal for that to happen after chemo. I prayed that it would quit. My dad is not one who likes to be stuck and he didn’t enjoy the days in there. Since I wasn’t there, I’d spend the days conversing over text with him. I wished to have been there so much, but being it was flu season and the pandemic was starting, I was terrified of bringing the kids around. He had our family, brothers and friends coming to keep him company.
Then came immunotherapy. I believe it was mid January, his doctor mentioned that she was trying to get him approved to take Keytruda, an immunotherapy drug, along with the chemo. My dad had sent me the info to research and it seemed like a promising drug. Very expensive, almost $10,000.00 for one dose, but insurance usually covered it. I read many stories of people who had success with it and we got a bit excited. He only ended up having one round of it.
The kids and I made a trip to visit at the end of February and stayed at my grandmas house. Only a couple days after I got there, things started going downhill. In retrospect, I’m glad I was there. I went with him and my mom on a Thursday for his standard chemo treatment. He’d just gotten out of the hospital two days earlier, where he’d been admitted for fever again, and given an antibiotic because they couldn’t find anything wrong. They still don’t know if it was the antibiotic, vancomycin, or keytruda, that caused what happened next.
Whilst visiting with the nurses and his doctor, my dad kept kind of falling asleep in the chair. They mentioned how they’d been pleased with what the chemo was doing. Some spots had shrunk, others were stable, nothing had grown. Brain spot had been taken care of. I asked his doctor about the biopsy results and asked her some questions regarding the info I’d researched. It almost amused me, she asked me if I was an X-ray tech and then said she’d put a note to talk to the tech who’d determined the biopsy results.
Following this, my dad showed the nurse this rash he’d had for a week or so and was getting a lot worse. She was very concerned and his dr came to look. He had welts, fluid filled large welts all over him. He said it felt like a bad sunburn. The doctor concluded it looked like a bad reaction to a medication or antibiotic. She hadn’t seen anything like it. My mom had left for work, so my dad and I sat around for another hour or so while the doctor tried to set up an emergency biopsy appointment at a dermatologist. My dad mostly dozed in the chair in the chemo room and I spent the time watching him, worried, biting my lip and thinking of whatever I could to keep myself from crying. This man was the one who kept me reassured in life that everything, every worry would be okay. How was this going to work that the worry was him? I was alone.
The next morning, he had his skin biopsy. They said the results would take a little while to get back. My dad was at home, I was at my grandmas. I texted him to see how he was feeling and he said again, “fine, just feels like a sunburn”. My mom sent me pics of new welts, nearing the size of dinner plates. By evening, he was in serious pain. Two of my brothers brought him to the ER, who assessed his pain, and had him taken by ambulance to the Regions Hospital Burn Unit in St. Paul. He texted me on the way there, letting me know what was going on. My older brother said when they came to break the blisters, it was the hardest thing he’s ever had to see in his life. The pain, evident by the shaking, yet my dad still tried to not let on. My mom went straight to the hospital from work and stayed with him through the night. After the blisters, they had bandaged everything up and then he almost went into respiratory failure. He was on oxygen due to low 02 levels, they think from the immunoglobulin they’d given. They pulled that and the levels improved.
The rest of my siblings and I took turns going to see him the next day. I had my five children with me and they couldn’t go, nor would I have wanted them to. The burn unit is a very strict facility. The risk of infection in patients so high. My dad was talking and awake when I arrived. His brother was also there visiting. My dad was in a hospital bed, bandaged, monitors beeping, falling asleep for a few minutes here and there. At one point, he was telling us a story he found funny from the time he was in the ER the previous night. This was almost a life changing moment for me and I videoed it. Here he was, having just experienced the most pain he’s ever had, and he was still laughing and finding the humor. No whining, complaining, or ranting. He was a superhero. There is no doubt about that. Regardless, after I said goodbye, the tears came. The smell of the antiseptics, the reality that my dad, my DAD, was in a burn unit, was too much. They were hot, angry tears. It wasn’t fair. This should not be happening to him, yet it was. And there was nothing I could do about it. As I washed my hands before exiting the unit, I felt like I was going to explode.
Photo 1- Arriving in ST Paul to Regions
Photo 2- Riding the elevator up to the Burn Unit with coffee for my mom and I
Photo 3- The view out my dads window
The next morning, my mom and I got ready to head back to the hospital to see him. I sent him a quick message to see how he was feeling today and whether we could pick up a treat for him on the way. He sent back, “hmmm, donut and coffee”. Good ol dad. His favorites. I perked up a bit.
When we arrived at the burn unit, my dad and a nurse, one hand on his elbow, were standing outside his room. The nurse was helping him walk around and move a bit and said he was doing good and they’d be right back. We went in the room to wait. After he’d gotten back and was resettled in his bed, he enjoyed his donut and coffee. After a little chit chat, an oncologist from the burn unit came to visit. He spent some time explaining a lot of things to us, he said the biopsy results came back inferring he had TEN. Toxic Epidermal Necrolysis. Rare and deadly. This severe allergic reaction results in blisters all over the body. It’s been described as literally burning from the inside out. The survival rate again, not good. But he survived, it was a miracle! A few days later, he was released from the hospital. They were incredibly pleased with how he’d healed and my mom would continue caring for him and changing bandages and dressings at home.
The evening he came home, we had a late birthday party for my youngest brother who was turning 15. My dad sat at the table enjoying his cake and coffee and looking so much like himself. His doctor was also giving him a break from chemo and planned to resume April 7th.
I left the next morning back home and planned to return as soon as I was able. It was early March now. The weather was starting to improve and we all had high hopes spring was going to make an early appearance. My dad had virtual appointments, as the pandemic was now causing the stay at home restrictions. After about a week being home from the burn unit, another problem arose. He started getting a full stomach feeling, which had previously gotten better, and his legs and ankles were swollen. Initially we assumed it was from so many IV fluids and the medications he was on. My mom had called his dr and they said to go to the ER. Turns out it was ascites, which is fluid in the abdominal cavity from liver damage/failure. They drained about 4L and sent him home. This happened about once a week for a couple weeks.
On one of his later drainings, they did their routine scan of the fluid and found it contained cancerous cells. They wanted him to do a follow up with his doctor. The week prior to this, he had been cleared of his skin wounds from the burn unit, his medication dosages were lowering, but he was exhausted. Then on Sunday April 5th, he wound up in the hospital again. They found he had varices bleeding, which is basically varicose veins bleeding in the esophagus. They were quickly trying to figure out what to do. They scheduled surgery to fix it. Then they did an mri on his liver. The cancer was everywhere. I wished I had seen the mri scans and my mom mentioned his dr had wished I was there to see them as well. I couldn’t believe it. I frantically started researching to find out what they were mistaking for sudden cancer all over. He texted me that they were now trying to figure out whether a new chemo treatment would help or kill him. They eventually decided any new chemo would kill him and decided that upon recovery from surgery, he’d go home on hospice. His doctor said he had liver failure.An example of our texts. I would get him to ask the doctors questions for me. 🙂
The ascites from the liver was having to be drained daily at that point. The day before he was released, they did surgery to install a manual drain on the side of his stomach so that he wouldn’t have to keep going back in. That also went successfully. I FaceTimed him with my kids the day before he was released and he sounded and looked like his old self, joking around with my kids, my youngest couldn’t get enough of seeing him and kept waving “hi grandpa!” It was so reassuring. I thought to myself, they have no idea what they’re talking about. It isn’t what they say it is, he’s going to be fine! Back to my research I went. I read that TEN usually affects the liver, but the liver regenerates. I prayed with all I had that that was the case.
My dad went home the next day, my oldest brother had left North Dakota when my mom had called us that Monday letting us know about the hospice. I had to get new tires on my car, so I had to wait a few days. We were on a mission to heal my dad quick. I called him that Friday evening and joked around with him for a bit and chatted, but he sounded tired and his voice gravely. I lost my optimism for a moment. I needed his assurance and at this point, all I could do was tell him I love him and we need him and I can’t wait to see him.
I kept texting him Saturday while I got ready to head there. He mentioned he’d gone out on the deck for fresh air. I asked if the blinds were open to let the sunshine in, he said yes. But his texts were getting shorter.
Easter Sunday. After the kids checked out their Easter baskets, I got them all buckled into the car, suitcase in the back. I had a sick feeling I was going to say bye to my dad.
When we were about an hour from my parents house, I looked in my rearview mirror and saw the entire horizon glowing orange and red. It was so beautiful I had to pull over on the side of the freeway, jump out and get a photo. Still couldn’t catch the beauty. Fitting for Easter Sunday evening.
I got to my parents house and my dad was lying in the recliner. The kids said hi to him and we talked a bit, then he asked my mom to help him to bed. After he was settled, I went and said goodnight and told him I loved him, and headed to my grandmas. I knew this Easter evening was the turning point. Tomorrow was either going to go one way or the other.
That night I sent my dad a red heart emoji. The last message I sent him.
The next morning, one of my sisters birthdays, my mom had texted me bright and early that I needed to get there as soon as possible. I warmed the car, got the kids ready, and headed out. With a quick stop at caribou drive thru, we made it to my parents around 9.
One of my dads brothers was there when we arrived, as well as all of my siblings except 3 of them (there’re nine of us). I saw my dad in the chair and broke down. He didn’t look good, but was sleeping. He was awake here and there and visiting us when he’d stir. At one point, my mom thought it was over and the family that was there crowded around him. One of my brothers, the one who worked with my dad, brought a speaker over and turned on some church music. Then my dad woke up. He turned to his brother and asked him “why is your hair black?” And his brother replied jokingly that he hasn’t had a cut in awhile. He’s very blond. My dad kept looking at him quizzically and then shut his eyes again. Then he opened them, sat up, put on his glasses and hat, picked up his coffee and took a drink. I thought, oh he’s going to be okay after all!
The remaining three siblings showed up at that point and I went outside to tell that what was going on. One worked in assisted living and she said she’d heard right before someone dies, they get confused and a burst of energy. I don’t remember if I said it or thought it, but there was no way that was the answer. He was going to be okay. As we were all visiting, some siblings going to hug him, tears falling on my dad, I vividly remember thinking their tears were so much bigger than normal. He called my second youngest son, who was very very close to him, gave him a hug and said “thumbs up for boy camp max”. Their thing. And then he looked at us all, pointed upwards with his index fingers, and said “All smiles tomorrow”.
He passed away about half an hour later, his entire family there with him. I went in my parents basement to my dads workspace. Hearing my entire family, including my daughters, crying out upstairs, I fell down on the basement floor crying for him. Anyone who’s been in this position, I’m sure you know what I’m talking about. The despair, the agony, the feeling that you wished you could take their place, the “this isn’t happening”, the thought that I failed him. I tried to save him, doing whatever pointless things I’d done, but in the end, God had his time. And that was it.
My 4 year old son walked up to me there on the floor and pointed at the white laundry room doors. He asked, “mom is that where heaven is?” I said sure. He said “that’s where grandpa is.”
Due to the pandemic regulations, we couldn’t have anyone but immediate family in the church. His service was broadcast online and many listened, they told us they were there together with our family. We got my dads favorite treat, donuts and coffee, to enjoy pre service. His close friends and family were there in separate rooms of the church. It was a very special service to be alone with him.
The burial at the cemetery was the same situation.
The love and generosity extended to my mom and our family has been incredible and there’s so so many thanks.
I strive everyday to be half of who he was. To enjoy the people in my life more, to respect more, be kinder, laugh more, love more, make time for anyone who needs you, be there for everyone. He was always there when you needed him or just wanted to talk to him. I always sent him texts with things I found funny and knew he’d get a kick out of. He shared my sense of humor and had time for it. He brightened my day everyday, and there’s an aching emptiness that will never be filled. Life goes on, we all stay busy, just without our rock to keep us grounded. Til we meet him again someday in heaven.
To my dad; my best friend, my confidante, my teacher, my sidekick, and now my angel.