David Kokjohn is a wonderful father of three beautiful, young girls. He is a concientious, 32 year old kind soul who was diagnosed on September 9, 2002 with a rare form of cancer called Mesenchymal Chondrosarcoma.
Up until his diagnosis, David was working as a Pharmacist at a Walgreens, loving his job in helping people (All who had worked with David and all of his customers can attest to this). He also enjoys spending time with his 3 girls, Alyson (11 years old), Samantha (6 1/2 years old) and Jessica (5 years old) whenever he could, his work and the girls kept him a very busy, happy person.
We want to tell you of David's story as to touch anyone out there who wants to learn about David and the type of cancer he has.
David first noticed a "cramp" or "pull" on the back side of his upper left leg in late December 2001. Blowing it off and thinking it was only a muscle pull. After a few weeks, the "muscle pull" did not go away so he went to physical therapy. During the next 3 months, physical therapy proved to be ineffective in clearing up the "muscle pull", and the back of his thigh continued to increase in size. During the entire time, the site never hurt. However, due to the swelling in the thigh, pressure was being placed on the nerves of the leg and pain was noticable in the knee and lower leg. Finally an appointment was made with an orthopedic doctor who specializes in sports medicine. This was the most obvious next course of action, as it was assumed that David had hurt his leg during exercise.
It was a full month before he was able to get into the office for an evaluation. During this time his leg began to swell considerably, causing much more discomfort. The physician did a quick evaluation in the office, testing sensitivity and range of motion. Then he said, "Hmmm. That's unusual." An MRI was ordered to look for some other reason for the swelling. The MRI was done at 2:30PM. The doctor called David at 5:30 that evening with the results. The news at that time was that while the MRI was inconclusive, the possibility existed that the swelling was due to some type of sarcomatous tissue. An appointment was set to see an orthopedic oncologist at the University of Iowa nine days later. This was a concern to David, as this seemed to be going very fast for something that was a remote possibility.
He went to the physician's office taking the MRI scans with him to his next appointment, and of course he read what the radiologist has written. And while the report was inconclusive, it actually favored a diagnosis of sarcoma. The visit with the doctor at the U of I was extremely eventful and informative. Even before the oncologist had seen David he had seen the medical history and MRI, and has already determined that the swelling was due to a sarcoma. The first meeting was in the morning, and immediately David was put thru a battery of tests, including chest x-rays, CT scans, blood tests, and a small needle biopsy. Three days later, the clinic called with the results. The biopsy was positive for Mesenchymal Chondrosarcoma with metastesis in the lungs.
Mesenchymal Chondrosarcoma is a rare variant of chondrosarcomas and may arise from bone or soft tissue. There are 5 types of chondrosarcomas, central, peripheral, mesenchymal, dedifferentiated, and clear cell.
I wanted to fill in more about the cancer itself but not having much time to put it all into words I will place an excerpt from Thomas Pacheco's website about the cancer. A big thanks to the Pacheco family!!! "Mesenchymal chondrosarcoma is one of the most monstrous cancers known. It can grow at an alarming rate, it is resistant to both radiation treatment and chemotherapy, it has a very high occurrence of metastasis (spreading to other parts of the body), and it has a history, remaining dormant for up to two decades and reappearing suddenly. Because of its tenacity and rarity, it is presently one of the deadliest cancers known. Long term survival rates are about twenty to thirty percent."
(December 2nd, 2002)
In David's case, when the tumor in the leg was discovered, the cancer has already metastisized to his lungs. The doctors did a biopsy to tumor in the leg, finding that it was at level 1 - grade 4, in another words, they said it was at a slow growing cancerous rate so chemo was not going to be very effective and had decided to go to the main tumor site with radiation treatment. After a few weeks at the end of the radiation treatment they were going to go in and surgically remove the tumor, 8 inches in length! After a couple weeks of recoop time from surgery they were going to go in and then remove the 3-4 nodules that were in the lungs.
To complicate matters, during the first week David was up at the Mayo clinic for his 2nd opinion, on the way home from the trip, David had a massive pain attack on his right side under his rib cage. The next trip back, they discovered David was throwing blood clots to his lungs! The doctors attributed this to the tumor in the leg, it was getting so large that it was holding so much around the bloody tissue and must have had leaked some of the blood clots, lodging them to the lungs. This continued for the next few weeks. These were David's actual first symptoms of having the cancer, he has been a very healthy young man otherwise.
During the 2nd to last week of David's radiation treatment, the doctors decided to do another round of MRI's and catscans because of his complication with the blood clots. The results were very distraughtful because the scans showed there were many more nodules to the lungs (this had developed within 3 weeks!). Now something else had to be done, because the cancer didn't seem to be the grade the doctors' had detected it to be, chemo was then entered into David's treatment. He received his first chemo treatment his last week of the radiation cycle(5 weeks total). Typically the doctors do not like to administer chemo when a patient is already going through radiation because it is already really hard on a persons body, but in David's case, something had to be done and they figured David was a very strong and fit man who can handle it more than a much older person could, the chemo was 3/4 of the usual dosage.
A few weeks later, David went back for his follow up and re-evaluation of what is to come next, surgery to remove the tumor in the leg then removal of the nodules in the lungs? This of course, was all dependent if the tumors in the lungs were controlled and/or were shrinking. The results were devestating! there were even more spots to the lungs and they've also seemed to have grown in size. Anyone who knew David or spoke with him about when he learned of his cancer, he has always been very optimistic, highly spirited and never sorry for himself, his only concerns and sorrowfullness were for his daughters.
Surgery is now out of the question, even to the main tumor site, everything had been going downhill and there was nothing we can do now but pray. David's only hopes now are to continue with Chemo to help shrink and even adbolish most of them before surgery is possible again. Those results came on November 20th, 2002 and his next round of chemo were scheduled for November 25th and 26th.
However, on Sunday, November 24th, David progressively gotten worse, breathing became much more labored and the family then decided that he had to go to the emergency room. He was then rushed to the Mayo hospital by ambulance, a 5 hour drive, his parents following. I recieved a call from his father first thing the next morning, only to recieve news that David was not doing well at all and the doctors were not hopeful. The days were becoming numbered and different plans were being made but by the grace of GOD and the loved ones surrounding him during this time, David pulled out the biggest miracle on that unit. Although things were very dismal, David went ahead and decided to continue with the chemo on Monday and Tuesday. Although taking the chemo meant it was going to be much harder on his body and adding to the fact that the doctors were not giving him any hopes, this was David's last shot of staying around for his girls. The doctors now call him the "miracle boy", mind you he is a 32 year old young man, but they can call him anything, he is our inspiration!
Today is Monday, December 2nd and we learned earlier today that David will be released from the hospital, the best news he has received since finding out about his cancer. This was a great acheivement, although there are still a lot of hurdles left to get over, we are blessed that we can still see his warm, smiling face.
My name is Alyson Kokjohn. I am the oldest of the three girls. One of my other sisters name is Samantha Kokjohn. She is the middle child. The youngest girl in our family is Jessica Kojohn.
We found out about my dad's cancer in September, 2002. Although we were very sad and scared we still stand very strong by his side helping him. We've been suportive and helpful. We vist or talk to him every day. We know what is ahead and we try hard to help him. My mom told me that this type of cancer is very rare. She said, "You have a better chance at getting struck by lightening ten times than getting this cancer." Life was different but my dad stated that all though this change has occured, you have to live life like you did before this happened." I know we have a lot of support from our family and friends and that means a lot to us because it helps gets through some tough times.
When my dad was staying at the Hope Lodge, we visited him a couple of times. Hope Lodge is located in Rochester, Minnesota and is a special place for people who are currently cancer patients at the Mayo clinic and need a place to stay for a while. The first visit to see him, he showed us where he had his radiation treatment and the last time we visited he showed us his room in the Hope Lodge. We hope for the best for him.
This is my story about my dad. Before we knew about his cancer he was living a normal life. He was a working at a pharmacy called Walgreens in Muscatine, Iowa. That is 10 miles away from where he lives, Wilton, Iowa. Along with working at Walgreens he was spending time with his girls. We used to spend one night a week with him and every other weekend. It was a shocker when we found out he was diagnosed with cancer. I knew somthing was wrong when my mom pulled into the driveway when she was supposed to be away on a business trip in Owensboro, Kentucky. We spent that night eating at a restraunt together as a family. It was very hard on our family because my mom and my dad are divorced.
I hope this webpage helps you understand about what is going on in our and other peoples lives. Thank you for reading my article on my dad.
Once I learned about David's cancer, I immediately went on the internet to do all the search I can about his specific cancer. I ran across a website about a boy named Thomas Pacheco, an 8 year old boy who has the same rare form of cancer as David (also see Carly Laverty's Story, a 4 year old girl who has the same horrible disease).
The search on this particular cancer turned out to be very minimal but still I am very thankful for the internet, I would have never learned as much as I did in the short amount of time and especially a big thanks to Thomas's father, Ron Pacheco for helping me get this website started.
My intentions for this website is also to help the girls through these times, the guest book can also be messages for the girls as well as David. This has really helped our family, time is a huge factor for us and because of the generosity of this website hosted by the Touch of Hope of Project, we can spend our time and efforts in helping David through this tough time. Please visit the Art for Hope Foundations Touch of Hope Project web site and show your support.
Sincerely,
Kim Kokjohn and Daddy's girls....Alyson, Samantha and Jessica
4-7-04
I needed to add this excerpt to David's story because I'm afraid not all is aware of what has transpired since the beginning of his story. It has already been a little over 6 months.....
It is sad to announce David's plight against cancer has ended October 3rd, 2003. David was a true inspiration to all who knew how hard he fought against this horrible disease. He did it without prevail and feeling sorry for himself, he fought for his 3 daughters. There is not a day that goes by the girls do not think of their daddy but one of the things they hold onto is what he told them near the end, "I will always be in your heart." Although he is no longer on earth with us, he will forever be in all of our hearts and minds. May David shine all over us in heaven and God bless us all.
