YORK – “When someone says ‘You have cancer,’ it could be some of the most mind-numbing and humbling words you can ever hear a doctor say,” remembers Amy Holthus.
“That is the statement that turned our world upside down.”
She and her husband, Kendell, had just been living their lives and raising their three daughters, ages 6, 7 and 9.
Their story began in mid-2011, when Kendell noticed a lump on his leg. The couple say they “didn’t think much of it” until it was still there three months later and growing larger.
“I finally convinced Kendell to go to our family doctor, who then sent him on to a surgeon,” Amy recalls.
“After an MRI, they told us they didn’t like what they were seeing and sent us on to an ortho oncologist at the Nebraska Medical Center in Omaha on Oct. 31, 2011.”
The doctors gave the couple stark black and white news, saying it was one of two things: a benign nerve tumor or a rare form of cancer stamped with the brand of sarcoma. When they scheduled Kendell’s surgery for the next morning, doctors went in with the feeling it was a nerve tumor.
“We didn’t think it was going to be any big deal,” Amy remembers.
“Kendell was going to be able to go home after the 3-4-hour surgery. However, that was not the case. About an hour into the surgery, the doctor came in and told me, ‘I’m sorry, but we had to end the surgery and close him up as the preliminary pathology report is showing a type of sarcoma.’”
It turned out to be Pleomorphic Undifferentiated Sarcoma, previously called Malignant Fibrous Histiocytom or MFH, which is an aggressive soft tissue type of sarcoma.
The doctor told Amy that her husband would be scheduled for five weeks of radiation on the leg, to be followed with surgery to remove the tumor.
“’It is never fun to hear the news that a loved one has cancer, but then to be the one to tell him that news is probably one of the worst tasks that has ever been asked of me,” Amy said.
“After that, we still had to tell our three little girls at home that their dad now has cancer. It is hard enough for adults to comprehend how someone – who feels great, just had a physical and is in tip-top shape – now all of a sudden has a life-threatening disease. We weren’t sure how much they understood, but we wanted to be open with them about it all, as their lives are affected by this disease as well.”
“We’ve been very open with the kids from the beginning,” Kendell said.
“They knew the ‘cancer word’ and that it was bad. But they’ve responded well through all of this. They ask questions and we try to explain everything the best we can.”
Kendell went through the five weeks of radiation. His wife marveled at how well he handled it.
“He never complained about the early morning drive to Lincoln and back,” Amy said. “He never missed work until the very end when his leg was so burned it hurt to sit – but even then, I hardly ever heard a negative word.”
By January, 2012, Kendell’s skin had healed enough for the surgery. But first was a set of scans to make sure the cancer hadn’t spread.
“Never did we expect to hear what we heard,” Amy said. “We never expected to hear that they found a spot on his lungs. Our surgery plans changed – instead of removing the tumor in his leg, first they had to do a lung resection. They were able to remove the nodule on the lung. A week later, he went back for the leg surgery.”
They were finally were seeing the light at the end of the tunnel – doctors came back to say that clear margins were obtained on both Kendell’s lung and leg.
“This was the best news we could possible ask for,” Amy said.
“We were told we didn’t have to come back for three months for routine follow-up appointments. Those three months were good! Life seemed so simple.”
When the three-month check-up rolled around, both say they felt uneasy and anxious about the results.
“But we never imagined what we were about to hear,” Amy recalls. “Our doctor told us flat out that the cancer was back and there were tumors in both of his lungs. Surgery wasn’t an option at the time, so we would have to start chemotherapy.”
And so began the next phase of their lives in the fight against sarcoma.
Kendell has completed eight six-day rounds of chemotherapy, “with very good results so far,” and surgery is scheduled for later this month.
“We want to hear the words ‘clear margins’ and ‘no other treatments are necessary,’” Amy says. “He is determined to beat this! We have our faith in God, a wonderful support system of family and friends and a great medical team that is helping Kendell defeat this.”
“The support we’ve had, since the beginning, from our family, friends and the whole community has just been amazing,” Kendell said. “We truly have been blessed by so many caring people.”
As they have fought their battle, the Holthus couple has been inspired – to not only keep fighting for Kendell’s life but to also help find a cure for others just like him who are afflicted by this rare disease.
One inspiration is Natalie Schlegelmilch, also a York County resident, who has won the battle against sarcoma.
Another was a baby, named Knox Lewis, whose relatives live in Utica.
“Knox’ family – I’ve never met them,” Amy said, “but they have touched my life. He was only seven months old when he was diagnosed with Rhabdomyosarcoma, a rare and aggressive form of childhood cancer. Knox went through treatments at Children’s Hospital, as well as at MD Anderson. He was such a fighter – however, God had other plans and called him home on Oct. 29, 2012. I had to ask myself, how can such a rare form of cancer be affecting so many people that I know? So little is known about sarcoma and a cure needs to be found so there is hope.”
That’s when Amy and others began organizing the upcoming “Yellow Out” event to raise money towards sarcoma research as well as awareness. All the proceeds will go to the MED Anderson Sarcoma Research Center (see details in accompanying text below article).
Organizers say the event is in honor of Kendell and Schlegelmilch, as well as in memory of young Knox Lewis.
“It’s all about funding research to someday find a cure for a rare form of cancer that is affecting more and more people each day.”
Basketball players from both the York and Fairbury teams will be wearing yellow socks – and the crowd is encouraged to wear yellow as well. Special T-shirts are being sold at this time – the deadline to order is 4 p.m., Jan. 7.
Yellow order forms are available at a variety of York businesses and at York High School. The forms may be turned in to the school or back to the business from which the form was picked up.
Freewill offerings will be taken for the soup supper (which will start at 5:30 p.m.) and an iPad has been donated as the prize for a drawing winner to attempt a half-court shot at halftime.
“She started all this,” Kendell said, smiling at his wife. “If it weren’t for her, this fundraiser for research wouldn’t be happening. And through all of this, all we’ve gone through, she’s really been here for me. We are a team.”
“We are a team,” Amy agreed.
“And the biggest thing we’ve learned is that we have to be positive,” Kendell said. “Attitude is 99 percent of getting through all of it.”
“Absolutely, we’ve stayed positive and we will continue to stay positive,” Amy added, “because it would be too easy to just give up.”
What is sarcoma?
A sarcoma is a cancer of the connective tissues, such as nerves, muscles and bones.
Sacromas can arise anywhere in the body and are frequently hidden deep in the limbs. They are often misdiagnosed and assumed to be sports injuries or benign bumps.
Sarcomas are rare tumors, comprising less than 1 percent of adults’ cancers and nearly 21 percent of children’s cancers.
>> Soft tissue sarcomas: Make up less than 1 percent of all cancer cases. About 11,000 people are diagnosed with soft tissue sarcoma in the United States each year.
>> Primary bone sarcomas: Make up less than .2 percent of all cancer cases. About 2,900 people are diagnosed with bone and joint sarcomas in the United States each year, and almost half of them are under the age of 35.
If you go...
Yellow Out to Box Out Sarcoma
>> What is it? Fundraiser for sarcoma cancer research, in honor of Kendell Holthus and Natalie Schlegelmilch (sarcoma survivors) and in memory of Knox Lewis
>> When is it? Jan. 18, during Fairbury vs. York basketball game
>> Where is it? York High School
>> What can I do? Order yellow T-shirts – turn order forms in to high school or business where you picked up the order sheet. Order by 4 p.m., Jan. 7.
>> What do I wear? The yellow T-shirts and/or other yellow clothes
>> What else will go on? Soup supper with freewill donation (starting at 5:30 p.m.); drawing for chance at half-court shot to win an iPad.