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Apr 30, 2017
Welcome to Ken's site. Below is an overview of Ken's journey so far. But the real story—with all the details, humor, and examples of kindnesses the family has received, told in Ken and Barb's own words—is in the Journal. Just click on the link above to see their entries. You can also leave messages in the guestbook.
In late January of 2007, Ken developed a persistent headache that wouldn't go away with over-the-counter drugs, and he was also extremely tired. (Ken said, “Imagine someone inside your head 24-7 pounding away with a sledgehammer.”) On Thursday, February 8 he went to his family doctor and had an x-ray and a CAT scan. He was told that he had a tumor in his left frontal lobe about the size of a golf ball.
On Monday, February 12 Ken went into surgery to remove the tumor. (He asked Barb if this got him off the hook for Valentine's Day.) When they went in they found that the tumor was larger than expected. They also found that it spanned both the right and left frontal lobes—a condition with the deceptively sunny name of "Butterfly Glioma." The surgeon was able to remove 90% of the tumor in the left frontal lobe, but was not able to remove anything from the right side.
The next day they learned that the type of tumor Ken has is called glioblastoma multiforme (GBM) brain tumor, grade 4. The prognosis was for six to eight months.
Ken was in the ICU for about 24 hours, then on another floor for a couple days. He managed to survive Hurricane Fajita, the large-bodied nurse who meant well but never figured out why Ken was there or why he would need a large garbage can in his room (he didn't). Everyone agreed Fajita was giving it all she had. It just may not have been enough.
Ken remained philosophical. His all-purpose catch-phrase during his stay in the hospital was, "It is what it is." Ken said that their friend Laura owed him a quarter every time he said that.
He went home on February 16. He got a lot of visitors, and no one was surprised to learn that boo-hooing was strictly forbidden. Ken saw the oncologist the week of February 18 and started radiation and chemotherapy. He went through daily radiation—32 rounds—and took daily dosages of Temador until April 17. The combination of surgery, radiation, and chemotherapy led to an overall decrease in tumor size.
At this point Ken began taking the steroid Decadron, sometimes up to dosages of 8mg. This was probably the part that Ken hated the most: the puffy face, the loss of trunk strength, the voracious appetite…
In May he began a monthly chemotherapy cycle: five days on Temador, 23 days off. The chemotherapy successfully kept the tumor from growing. The goal during this time was to "get back to normal" and Ken continued to work.
In June the family took a long-awaited vacation to Colorado, where they rode in a hot air balloon, went horseback riding, and experienced a wild white-water rafting trip (see Barb's journal entry for July 2, 2007 for details). In August the family went camping in Wisconsin. And in September Ken took an eating, drinking, fishing, and cigar-smoking trip to the Ozarks with his high school friends. Another of the highlights of the fall was when the Chicago Tile Contractor's Golf Outing was held in Ken's name on September 14.
In October he and Barb celebrated their 20th anniversary at a resort in San Antonio, Texas. In December Ken finished his tenure as President of the Chicago Floorcovering Association; at the CFA's annual Presidential Ball, they named Ken as Person of the Year and donated funds in his name to the American Cancer Society.
His biggest medical achievement was gradually reducing the dosage of Decadron until he was taking only 1mg by March 2008. He was determined to get off the drug completely, but in mid-April it became clear that the tumor had begun to grow again.
After a busy weekend, Ken woke up Monday exhausted and unable to form complete sentences. An MRI revealed that the tumor was on the move. The steroid dosages were increased, which was a huge disappointment for Ken, but his speech did improve. On May 23, an Ommaya Reservoir was inserted in his brain for the purpose of draining the tumor and reducing its size. Ken also began taking Avastin, but after he developed an infection at the surgery site, he was forced to stop and the Reservoir had to be removed.
Ken celebrated his 47th birthday on June 21, and Barb threw a surprise birthday party for him at a private box at the Arlington Race Track. The tumor continued to grow, however, and the exhaustion and speech problems increased. On July 7 Ken decided to end treatment, and a week later he began his official retirement from work. Hospice began on July 15. His bed has been moved to the dining room so he didn't have to struggle with the stairs any more.
The final weeks of July were filled with visits by friends and relatives. As we begin August, almost 19 months since his diagnosis, the phone calls, letters, email, and food keep pouring in. Ken's days are growing simpler. He sleeps most of the day, eats a little, and speaks only a few words at a time, though he can still make his wishes known. We're approaching the end of the journey one step at a time, carried along by loved ones and laughter.