He lived 26 short years, but in his time on earth, Kepha Anyega Ongoto brought joy and laughter to people on two continents and inspired the best in the people of Rochester, Austin, Burnsville, Maple Grove, Robbinsdale and Chanhassen.
Had he remained in his native Kisii, Kenya, Ongoto’s life would have ended about three years earlier. He suffered from a rare cancer — alveolar soft part sarcoma. But his sister-in-law Tami said, “Not on my watch,” and set out to bring him to the United States, where he’d have a fighting chance.
Although she had never met Kepha, Tami felt connected. In fact, the two shared a birthday. “I didn’t know him, but I love my husband. Therefore, I love his family,” Tami said. “I didn’t think about it, I just did what I needed to do.”
“I owe Tami so much,” said Kepha in an interview shortly before his death. “She did everything to help me. It all started with a lump in my [left] leg. They wanted to remove it, but they didn’t tell me why.” That’s the way of doctors in small-town Kenya, said Kepha’s brother, Nicodemus. “They keep bad news from you, and do what they can to help you. They think you’ll just suffer more if you know” the dire prognosis.
“They removed the tumor, but I was in a lot of pain when I woke,” Kepha said. And it was all for naught. The tumor came back.
1% of all cancer cases
Meanwhile, Tami was contacting everyone she thought might be able to help. Because the cancer was so rare, comprising only about 1 percent of all cancer cases, Mayo Clinic agreed to absorb all medical expenses if Tami and Nick could get Kepha to Minnesota.
“Fortunately, we could help,” said Dr. Scott Okuno, an oncologist at Mayo. Just days before he was scheduled for amputation in Kenya, the call came and Kepha was on his way to the United States, never to return alive to his homeland.
“I thank God they didn’t do the amputation there,” Tami said. When Kepha arrived at their home in Austin, Minn., he had a CAT scan and a biopsy of the tumor. Doctors discovered the cancer had spread to his lungs. He went through a round of chemotherapy that shrank the nodules in his lungs, but did nothing to alleviate his pain. In June 2008 his leg was amputated, an event Kepha both welcomed and dreaded. It was a chance to get rid of the long-term pain, but he still remembered the excruciating pain from the tumor removal in Kenya. He did well, was hospitalized for only two nights and went home on crutches, recovering quickly.
In fact, Kepha became the primary caregiver for his nephews Alex and Christopher, now ages 6 and 8, watching them while Tami and Nick worked. The three became close, expanding their loving circle to include baby Melia a year later.
But Tami wasn’t finished. “Kepha was missing out on so much — Alex’s T-ball games and other stuff he wanted to do, plus his back started hurting from being hunched over his crutches.” It was time to get Kepha a prosthesis.
‘We did what we did because she asked’
“I emailed all different kinds of places, even the “Oprah” show. The American Cancer Society gave me names of people who might be able to help. One was Roger Wagner of Hanger Prosthetics and Orthotics in Burnsville. I called him and left a message, telling him my story. When he called back, he didn’t hesitate, didn’t say he’d have to think about it. He just said, ‘I’d be more than happy to help your brother-in-law out.’ “
“We did what we did because she asked,” said Wagner, practice manager and certified prosthetist and orthotist at Hanger. “We’re here to help people any way we can. He made an impression on all of us, and we miss him.”
“He told me, ‘You’re a young person. I’m going to make sure you get a good leg.’ ” Kepha said. “I didn’t have any insurance so there was no physical therapy, but he said, ‘You’re so young, you’ll pick it up right away.’ ” And he did. About that time, Nick’s job moved the family to Maple Grove, and Kepha became the patient of Dr. Harold Londer, an oncologist at the Hubert Humphrey Cancer Center in Robbinsdale.
“He was a very, very nice young man. He had a tremendously positive outlook throughout. He was a fighter all the way,” said Dr. Londer. “I’ve been in practice many years, but I have only seen two patients with this type of cancer.” Several experimental drugs shrank tumors in his lungs and stabilized Kepha’s condition for a while.
“But in the end, it just took off dramatically,” Dr. Londer said. “Kepha just dealt with this; he didn’t like to complain. But he had a lot of faith and was always at peace,” Dr. Londer said. “He wanted to live, but accepted that his cancer was terminal.”
‘He was so funny and upbeat’
Kepha thrived on good medical care and the love of his family and newfound friends. It was impossible not to like Kepha, said Melissa Hanson, Tami’s best friend. “It was a privilege knowing him. He was so funny and upbeat.” He was also a ham, always taking pictures of himself in silly poses with a camera mounted upon a tripod, she said. During his time here, he even met a special lady and made dozens of new friends who marveled at his zest for life and lack of self-pity.
“He was here three years, and I swear he knew more people than I do,” Hanson said. His last celebration was his sister Christine’s wedding. He and Tami were planning for a big joint birthday party a few weeks later, but it was not to be.
The cancer was back in his lungs, bringing with it a nasty hacking cough. The cancer had also metastasized to his skull, leading to headaches. Kepha was told that his cancer was in its last stages and he had six months to live, at most. He was admitted to North Memorial Hospital a few days later.
“The doctor told him, ‘Kepha, our goal is to get you home, but I don’t think it’s going to happen. You are very sick,’ ” Hanson said. Even that news didn’t destroy his enthusiasm and zest for even the smallest things in life — such as his favorite sub sandwich.
Two days before his death, Hanson visited him at North Memorial Hospital, taking with her a 12-inch toasted turkey sandwich on wheat bread, with cheddar cheese, onion, lettuce, tomato, cucumbers, green peppers, mayo and sweet onion sauce. At one point, he started coughing uncontrollably and Hanson moved the sub out of reach. As soon as he recovered from the coughing attack, he said, ‘Hey, give that back. It may be my last meal,” Hanson remembered with a smile.
As she left, she gave him a hug and started to cry. As he returned her hug, he “patted me on the back and said, ‘Don’t cry, Melissa. It’s OK. God has our lives planned before we’re even born,’ ” Hanson said.
“What an amazing person. He was comforting me.”
Two days later, Kepha died. Nick vowed he’d take his brother’s body home to Kenya to provide closure for his family. “If I can bring any kind of joy to my mom at this time, I’m going to do it,” he said.
A few weeks later, he and his sons made good on that promise.
One of Kepha’s Ongoto’s last wishes was that someone in need — as he was — be given his prosthetic leg. If you or someone you know needs a left prosthetic leg, you can contact Nick Ongoto at 507-271-6912 or email him at firstname.lastname@example.org. Information on memorials to the family can also be obtained from Nick.