Neil’s story is unique in the fact that he actually graduated with Kyle Strand, the original INDY warrior. Neil and Kyle actually went through their journeys at the same time. While talking to Kayla, Neil and Kyle’s mom, Sue, they all mentioned the bond that Kyle and Neil shared, because of their health complications.
I (Chelsea) originally reached out to Neil’s wife Erica, asking if she thought he would feel comfortable sharing his story, not only with me, but the entire INDY nation. She told me that she wasn’t sure, as attention isn’t usually his thing. She very soon told me that Neil agreed. He said “he’d do it for Kyle”.
Can you tell us about your story?
I got the flu in January of 2016. I got over it fairly quickly. A week later I got sick again. One night while I was playing with the kids on the floor, I felt like I had been stabbed in side with a knife. The doctor I saw told me it was a pulled muscle and to take Ibuprofen. A couple days later I saw purple spots on my feet. I just thought it was broken blood vessels. One night I bit into a plain M&M and thought that I broke my whole jaw. I couldn’t chew. A couple days later that got better. On February 19, I got up and did chores and had shortness of breath. I would sit down, and it would get better, but it kept happening. I finished morning chores and then took a nap. When I woke up, I had lots of pressure in my head. I called Erica to take me to urgent care at CentraCare. There, I was tested for strep and influenza which both came back negative. They decided to do more blood work. I was in a hurry because on top of my own chores, I was covering my uncle’s work, as he was recovering from surgery. Erica went in the hallway and had a weird look on face. It was about 15 minutes later when Erica and two nurses came in. They explained to me that my platelets at 10 – very low. We were then sent to the hospital and would be told four days later that I had Leukemia. There were many hurdles along the way. At the first bone marrow biopsy, laying on my stomach, they tried to do it, but had a dull bit. They then put a new bit on and went too far. Eventually found out they never hooked me up to the IV – no numbing, felt 100% of it. After all that, he found out the following morning that they took a bad sample and had to do it all over again.
I started chemo February 25, 2016 and at the time 90% of my blood was leukemia. I ended up celebrating my 33rd birthday in the hospital. Everything had been timed out perfectly so that I could just enjoy cake and ice cream, but another setback came and I needed blood, so I was actually receiving chemo while celebrating that birthday.
The doctors told me that I needed a bone marrow transplant, no way around it. They tested all of my siblings. I did a consult with the doctor that would be doing it, only to find out that I didn’t need a transplant due to chromosomes changing. My body fought off everything it needed to without it.
I eventually found out that I had spinal stenosis, and had to get a reservoir put in my head. In situations like these they have to take fluid out as they put chemo in and they had to tap five times. They were doing spinal taps to get the chemo to the brain because cancer likes to hide there.
After they put the reservoir in, they put me in the ICU, because my whole head ”blew up”. I found out the next morning that they put it in the wrong spot. They did surgery again and placed the reservoir in the correct spot and I woke up in no pain. The oncology doctor came up to the ICU and took me back to oncology and started chemo the same day.
On Mother’s Day, I had a bloody nose that wouldn’t stop and I was coughing up blood clots. I wanted to let Erica sleep in because it was Mother’s Day, so I wanted until she woke up at 8:00, and she took me to the ER at noon. I walked into the ER and they tested my levels and my hemoglobin was down to a four (According to the doctor, you shouldn’t be able to function under seven). I ended up getting four pints of blood. I came home two days later and finished putting crops in. The doctor let me prolong round five of chemo so I could complete planting.
The original plan was that Neil was supposed to go through six rounds of chemo and then do the bone marrow transplant. But again, U of M said there was only a 50% chance of bone marrow transplant working and no siblings matched. That was why they decided he was young and doing well with treatment and no longer needed transplant.
Rounds six and seven of chemo came with no issues!!
After round 8, I walked out of the hospital – all nurses working bubbled me with love as I finished and was leaving!
Two weeks later, I got sick again, and was back in the hospital for 24 days.
It was at the end of September 2016 that they did PET scan and everything came back good- all clear! I then started the two year maintenance plan.
In September of 2018 I hit the two year maintenance mark. Neuropathy that I got from chemo still bothers me. I experience no feeling in my feet, feels like they’re sleeping all of the time. I also experience this in my arms and hands as well. It can make it hard to sleep, because it hurts so bad.
In January of 2019 had to get Omaya reservoir out. Met with the doctor for pre-op. He told me that I should live my legacy out now instead of waiting until I’m 65. Since I already had cancer, my chances of getting a different kind of cancer and recurrence rate is higher.
I got the port out and am currently on no medications!
We all have inner superpowers. What would you say are some of yours?
According to Erica: Neil is a very easy going guy who gets along with everyone
Neil recognizes that he can make people laugh, lots of jokes. He told me that when he was in the hospital it was during Olympics, he liked watching beach volleyball and tried to get his nurses to dress like the girls playing volleyball.
What brings you joy and fulfillment?
My kids, my wife. When I was in the hospital, the whole year, 2016, not once did I think I was going to die. All I could think about was getting home to the kids and the wife and getting back in the tractor. It never occurred to me until I was done that there was a chance that I wouldn’t come home. Someone was up there almost every night.
What does it mean to be a cancer survivor?
I’m still here and able to see my kids grow up. Father Mark, up at the hospital, we got really close up there. He would come visit me when he was working and we grew a close bond. He had cancer twice - Lymphoma. He changed his whole life around, diet/exercise and It just came back for a third time.
Who was an influential person to your cancer battle?
Again, Father Mark. He would come in there and we would talk about what we both went through. He could relate (also had a farming background), so he would understand why I would push the boundaries on the farm to get the farming done against the doctor’s orders.
What were some key things that helped you in the midst of your battle?
The love and support of family and friends.
Knowing what you know about cancer, what would you tell other survivors?
Everyone says stay positive, which is a key thing. I didn’t think twice. I look back at it and think it was a dream. I stayed in my normal routine. I’d get in a tractor, drive around and look at crops. I kept doing things to keep my mind off of it.
Any final thoughts you’d like to share?
I was honored when Erica said you’d reached out. I remember when I went to see Kyle in the hospital. Seeing Kayla and how strong she was, with her husband like that. She’s a very inspiring woman.