Living Life To The Fullest: A True "It's A Wonderful Life" Story
By ALAN WESLEY
Josh Kaufman was a shy child. "Sometimes you didn't know he was around," says his mother, Robin Kaufman. When a band teacher asked him what instrument he would like to play in the 5th-grade band, Josh was too intimidated to tell the teacher that he could play the drums.
But he grew out his shyness - grew to become a broad-shouldered, six-foot-tall, All-Conference defensive back on his high school football team, and the boy who "never spoke" now made friends easily.
When he was 16, he grew to love Megan Crump, a pretty, brown-eyed girl with dark hair who worked alongside him in her father's variety store. And Megan returned his affection.
Josh graduated from East Central College in December 1998. He was 20 years old, living at home with Robin, his dad, Mike, and his younger brother, Jake. He was planning to enroll in some computer courses. But throughout that winter he had suffered from colds and sinus infections that never went away. He told his mother that he felt tired. Robin made a doctor's appointment for him.
After some blood work, Dr. Florante Repaso called Robin into his office. "We're looking at a serious problem," he said. "Josh's white blood cell count is extremely high."
Further tests at Missouri Baptist Medical Center in St. Louis confirmed Dr. Repaso's suspicion. Josh had leukemia.
"We didn't understand the full depth of it at the time," says Robin. Josh just said, "Okay, I've got this and I'm going to deal with it."
Josh received chemotherapy at Missouri Baptist Medical Center. Every two months, he endured painful bone marrow biopsies taken from his hip to determine if the chemotherapy was working, and he underwent lumbar punctures so that his spinal fluid could be analyzed for signs that the cancer was spreading through his brain and central nervous system.
Fortunately, Josh was able to receive some of his chemotherapy treatments close to home in the oncology department at Missouri Baptist Hospital-Sullivan. Robin recalls that on his first trip there that he met Bridget Hulsey, RN, a nurse who works in the hospital's oncology unit. She looked up at Josh and said, "Hi, Josh, you and I are going to become best friends." "And they did," Robin says.
He was the youngest patient in the Missouri Baptist Hospital-Sullivan oncology department but, true to his nature, Josh made friends with patients and staff. According to Robin, the entire oncology staff, including Terri Brown, RN, and Hulsey spoiled him. "If he wanted a Popsicle, they got him a Popsicle," she laughs.
He received medications that he and his family referred to as "hairkillers." And his steroid medications caused him to gain weight and become irritable. He tried to return to college, but he was exhausted and slept long hours. Through it all, Josh believed he was beating the cancer.
Then the roller coaster ride began.
Within a few weeks his cancer was in remission, and he proposed to Megan in June 1999. They planned an April 2001 wedding. But in the fall of 2000, the leukemia returned.
Jake was tested as a bone marrow donor for his brother. The Kaufmans had a one-in-four chance of a match for the procedure and Jake turned out to be a viable donor.
"We thought it was a gift from God," says Robin.
In February 2001, Josh underwent a bone marrow transplant at Barnes-Jewish Hospital. Robin and Mike were told that the first 100 days following the transplant would be critical. On day 99, the day that his and Megan's wedding announcement was published in the local paper, Josh learned that the leukemia was back.
On the recommendation of Josh's physicians, the wedding plans were pushed back until November. He was simply too weak.
"After a while, you're almost afraid to celebrate good news because tomorrow, the news might be bad," says Robin.
Michael Bolger, MD, an oncologist at Missouri Baptist Medical Center, put Josh back on chemotherapy. Josh was told that he could die. His face went blank and then he said, "Okay."
He rallied again, responding well to the treatments. "They were amazed at his will to live," says Robin.
Dr. Bolger recommended that Josh go to the M.D. Anderson Cancer Center in Houston, Texas.
The physicians at M.D. Anderson put Josh on an experimental medication, which seemed to work. Josh received treatments there for five weeks while Robin, Mike and Megan shuttled back and forth between Sullivan and Houston.
Friends and family members pitched in to help. They watched the Kaufman's house while the family was away and prepared meals for them when they were home. The community responded with a benefit auction.
And through the long hospital stays, Robin watched her son's heroic struggle in amazement.
While he slept, she memorized his face. "He had dimples and a wonderful smile. I'd be sitting there thinking that I just want to be able to remember him. He was beautiful, inside and out."
Josh told his physicians that he was getting married in November and refused their advice to hold the wedding in Houston. He wanted to go home.
He and Megan were married in Sullivan on Saturday, Nov. 3, 2001. On the following Monday, the newlyweds boarded a plane back to Houston. "Okay, let's imagine we're really on our way to Hawaii with a little detour to Houston," Megan told him.
Josh endured an experimental donor lymphocyte infusion treatment. Jake was the stem cell donor for the procedure, but this time, Josh did not respond well. The doctor's wanted to try another round of chemotherapy. Josh refused. He could receive chemotherapy at home, and that's where he wanted to be. Dr. Bolger agreed, and Josh returned to Sullivan.
He and Megan moved into a duplex apartment. "They just wanted their lives together," Robin says. Josh sent Megan to buy a Christmas mug. It was a Kaufman family tradition to set out a mug of milk and a letter for Santa Claus, as well as carrots for the reindeer, on Christmas Eve.
Another family tradition was to watch "It's a Wonderful Life."
"We laughed when we watched the movie with Josh. He had every line memorized and spoke out loud with each character," Robin says.
A few days before Christmas, physicians at Barnes-Jewish Hospital proposed another bone marrow transplant, this time with an unrelated donor. But one night, at home, Josh's calf muscles tightened. Over the next few hours, the pain became excruciating.
On Christmas Eve, he was taken to Missouri Baptist Medical Center. They ran some tests and sent him home with pain medication.
On Christmas Day, Josh called his parents. The pain was unbearable and he could not walk. At his request, the Kaufmans packed up some of Josh and Megan's Christmas presents and followed Josh's ambulance back to Missouri Baptist Medical Center.
"We thought it was just another bump in the road," Robin says.
During the morning of Dec. 26, Josh's blood pressure plummeted and he lapsed into a coma. He was in the ICU on a respirator, and there would be no rally this time. Dr. Bolger told the Kaufmans, "Josh will let us know when it is time to quit."
"I am so grateful that we never had to tell Josh to give up," Robin says. "Mike and I talked about it many times, and we didn't know how we would do that."
On Dec. 27, Josh died at the age of 23.
"You have to take what you're given and do the best you can," Robin says. "We lived our lives the best way we knew how. I don't want people to feel sorry for me. I feel very lucky to have had the time I had with Josh. I witnessed a beautiful life for 23 years."
"Strange, isn't it? Each man's life touches so many other lives. . ."
- Clarence, "It's a Wonderful Life"
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