by Dennis Dalman
editor@thenewsleaders.com
When 21-year-old Kelly Orndorff woke up groggy from brain-cancer surgery, she opened her eyes, blinked, then looked around without seeing anything and with a quickly dawning horror she realized she was blind.
There was no word for her terror. Devastation didn’t even come close. She wailed, and a whirlwind of dark thoughts scurried through her mind:
“Nobody will want to marry me or hang out with me . . . My life is worthless. I’m a worthless human being . . . I’ve been robbed of independence at an early age . . . I wanted to travel and see so many things . . . I won’t be able to see my sister’s baby about to be born . . . ”
One sinking, hopeless thought followed another, bleak emotions and dashed dreams bumping into one another in a vast darkness.
What made it so bad is that it was just the latest devastation endured by Kelly and her family in the previous two months of the horrible summer of 2015.
Orndorff family
Kelly, a 2011 graduate of Sartell High School, is the daughter of Paul and Jane Orndorff, long-time Sartell residents. Paul, who served on the Sartell City Council some years back, worked for Connexus Energy for years, but for the past five years he has worked for Great River Energy, based in Maple Grove.
For years, Jane Orndorff owned and operated a day-care business in her home. Later, she and her husband bought the Liquid Assets coffee shop in Sartell and operated that for several years. Most recently, Jane worked at Edward Jones financial services in Sauk Rapids.
The Orndorffs have four children – Brent, Andrea Maday, Nick and Kelly, the youngest.
Jane and Paul had had health problems of their own in recent years. In 2010, Paul had hip-replacement surgery, but the replacement product that was used poisoned his blood, causing severe infections and resulting in five more major surgeries over a long period of time. Jane, too, recently had to have knee surgery.
A grim month
The springtime of May 2015 brought so much excitement, happiness and hope to the Orndorffs.
Kelly was set to graduate on May 16 from the University of Minnesota, Duluth, with a degree in public-health education and promotion.
The weekend before her graduation, Kelly and sister Andrea took their paternal grandmother, Frances, on a weekend trip to Iowa for sightseeing and shopping. But suddenly in Iowa, their grandmother became extremely frail and sick, apparently from a bout of pneumonia, and she had to be rushed to the hospital in Sioux Falls. As their grandmother lay weakly in the hospital, Andrea had to drive Kelly back so she could attend her graduation ceremony. Paul heard the worrisome news and quickly drove to Iowa to see his mother. Then he had to leave again to drive to Duluth to see Kelly graduate. Right after that happy occasion, he hurried back to Sioux City where his mother died that Sunday.
Paul described his mother as “87 going on 67” – bright, energetic, sharp as a tack right up until the end.
He quickly found out, however, there was really no time to grieve properly for his mother because another terrible shock suddenly struck the family out of nowhere.
Headaches
During her last semester in college, Kelly began to be plagued with painful headaches. She was sure it must be something to do with her neck.
After graduation, the Orndorffs helped their daughter move back to Sartell. Kelly and her boyfriend were planning to move to Champaign, Ill. where they had already secured an apartment.
While helping their daughter move from Duluth, the Orndorffs became very concerned about her severe headaches; they just knew something was wrong, drastically wrong. Back home in Sartell, June 1, Kelly went to see the doctor. Three days later, she was undergoing a diagnosis via a magnetic-resonance-imaging machine. Twenty minutes into the machine, an analyst saw something alarming on the read-outs: a massive brain tumor. A biopsy later revealed the growth to be cancerous – a Grade 3 anaplastic astrocytoma. The tumor was as big as a fist with tentacles from it growing into other parts of the brain.
Heartaches
When she learned of the brain cancer, Kelly broke down and cried and shouted.
“It was like a kick in the stomach,” she recalled.
She shouted questions that had no answers: “Why me? I’m only 21! How is this happening?!”
Her parents held her hand. A nurse rushed into the room and gave her a hug.
“Keep your faith,” the nurse told her. “God will stop this.”
Kelly regained her composure, determined to help stop the massive growth growing in her head, confident that a doctor somehow, somewhere would be able to eradicate the monster.
Surgery
On July 7, after many preparations, Kelly underwent surgery at the Mayo Clinic, a 14-hour delicate ordeal led by Dr. Ian Parney, who is one of only six surgeons worldwide capable of doing such intricate touch-and-go surgery on a brain tumor of that kind.
Before the surgery, Kelly had started to experience some vision loss, but nothing prepared her for the horror of waking up after surgery to discover she was virtually blind. All she could see were wavering shadows of black-and-white contrast with no color and no detail whatsoever.
Pressure from the fluids and tumor on her optic nerves had caused the loss of vision.
Despite the terrible new reality – legal blindness – Kelly’s doctors were optimistic. They had removed most of the tumor. The parts that had grown into her brain would be dealt with by two months of daily radiation treatments and oral chemotherapy, a regimen she began a month after surgery.
But, first, she was allowed to recuperate at home. Jane quit her job to be with her daughter full-time in their Sartell home.
Terror returns
In the midst of radiation treatments, lab technicians noticed a massive amount of colored fluid had started seeping from Kelly’s head incision caused by the earlier surgery.
It was a major setback.
On Aug. 16, she was back at the Mayo Clinic for emergency surgery – a craniectomy, meaning permanent removal of a large part of Kelly’s skull. Almost the entire right side of her skull from the ear area to the top right was removed and discarded.
The recovery sight was gruesome. Kelly lay there, her face swollen and bruised, with 66 steel staples running in a cruel zig-zag up the right side of her head.
And two days later, after the craniectomy, Kelly had to undergo yet another operation, an eye operation this time. It was one called a bilateral optic nerve sheath fenestration. The operation relieved some of the pressure on the optic nerves, otherwise they would have been completely destroyed by the relentless fluid pressure. Her sight, however, will likely never return unless some medical miracle makes that possible.
Later, Kelly was measured for a helmet that she had to wear – a helmet to protect the inside of her head. That is because with the right part of the skull gone, the shape of her head on that side had become concave with nothing but skin and some tissue sunken in on that side. Her head looked, literally, “caved in” on that side.
She also had to undergo two spinal taps to relieve pressure from fluid build-up.
Under the knife, again
After recovering from her third surgery, Kelly resumed radiation treatment at the Mayo Clinic. She and her mother were able to stay in the Hope Lodge, a place by the Mayo for patients and loved ones so they don’t have to drive long distances back and forth repeatedly for treatments. They stayed their for six weeks (last half of September and first part of October).
More healing followed, and finally, some good news started to bloom. The tumor and its tentacles seemed to have been eradicated, although Kelly’s head was still concave on its right side, the skin sunken into the post-surgery void that had been left in her head. She lived that way, with the helmet, for 11 months.
After measuring her head intricately via an imaging machine, a kind of “map” was made for a cranial piece to replace the big part of the skull that had been removed and discarded months before. The map was sent to a specialist in Miami, who – by using the “map” – succeed in creating a titanium skull piece, a perfect match, via a 3-D printer.
On July 19, Kelly endured yet another surgery when surgeons connected the titanium skull piece to the other part of her skull by using 18 titanium screws at three attachment points.
Faith, friendships
Kelly’s recovery from the surgeries and setbacks has been excellent. Her family, friends and acquaintances are constantly astonished at how she has kept up her courage, her determination, her humor and her grace under pressures that would have debilitated most people in a slough of despair.
Even after the most traumatic shocks – discovery of the tumor, subsequent blindness – Kelly seemed to bounce back with brio after the initial fear, sorrow and disappointments.
She and her family credit several things for her positive attitude and recovery: faith in God, family members helping one another, friends, Sartell residents (including some total strangers) and the people in the Orndorffs’ church: Celebration Lutheran in Sartell.
“Kelly has kept an unbelievabl(y) positive attitude and enthusiasm for life through(out) this entire ordeal,” said her father. “Her faith has grown tremendously and has been the focus during her recovery. Family and friends have been (a) tremendous support, and the Sartell community has huge supporters throughout.”
Many people who know Kelly have remarked with amazement how, even through her darkest times, she managed to inspire others with cheer and hope for their own lives. She has given talks at churches, schools and groups about the silver linings in adversity and the importance of faith.
“This sounds clichéd, but it’s true,” Kelly told the Sartell-St. Stephen Newsleader during an interview. “Without faith, family and friends I couldn’t have done it. It’s very humbling to see people step up, come out of the woodwork and be so thoughtful and generous. I’m so grateful for the Sartell community and especially for the people at Celebration Lutheran Church. People – even total strangers – gave us gift cards for gas, for dining out, for time in motels, and Dad had to miss a lot of work, and they were so good about it. There has been so much kindness, generosity, love and support.”
Even Kelly’s loss of sight was, for her, at times inspiring.
“In a weird way, it’s been a blessing,” she said. “I ‘see’ the world in a very different perspective than I used to. I’m more connected to family and parents, and I’m more open and honest and close with friends. It’s as if I actually have a better set of eyes to see with now, to see the things that are important. I relate to that line in Second Corinthians, 5:7. “We walk by faith, not by sight.”
Adaptations
Kelly knows her adaptations will continue throughout her lifetime. She now has a white cane and plans to get a leader dog, possibly through the Lions Club. She also plans to take lessons soon in braille, a way for the blind to read.
“It’s quite easy to get around the house because I’ve lived in it for so long,” she said.
She was surprised at how her other senses became sharper in a compensatory way after the loss of her vision. Even her fingertips seem to have become more sensitive, so much so she can pretty much choose which clothes she wants to wear by the texture of the materials, knowing one piece of clothing from another.
It was and still is a joy when Kelly gets to hold her baby nephew (sister Andrea’s son Leo Maday.) He is, she said, “a little ball of joy.”
Kelly’s parents, though they grieved and shed so many tears, still find it hard to comprehend how their daughter endured so much pain, crushing disappointments and setbacks.
“She has certainly been one tough gal who has never once fallen away from a positive attitude and spirit,” said her father. “She cried at the time the doctor walked into the ER and told her she had a brain tumor, but she only shed tears for a minute and then she reacted in a way I can’t understand some times. She has been positive, fearless, courageous, inspirational and a leader for most of us. Jane and I have cried countless tears, and she (Kelly) is telling us to be strong. Oh my!”
Kelly Orndorff, though blind, loves to hold her baby nephew, Leo Maday, whom she calls her “little ball of joy.”
The Orndorff family stands for a photo taken during daughter Andrea (Maday’s) wedding. From left to right are Nick, Paul (father), Jane (mother), Andrea, Kelly and Brent.
It was a grim and grisly outcome, visually, what with 66 staples in her head, but it’s an operation that saved the life of Kelly Orndorff. A great surgeon removed a huge brain-cancer tumor from her head July 7, 2015.
An emergency operation due to a sever infection after the first one, Kelly Orndorff had to have a huge portion of the right side of her skull removed and discarded, leaving her head concave on its right side.
This is the specially designed helmet that Kelly Orndorff had to wear for months to protect the right side of her skull where a huge piece of it had been removed and discarded.
After a huge piece of her skull was removed in surgery, Kelly Orndorff smiles, brightening up the day for her family, doctors, nurses and visitors to the Mayo Clinic.
In a photo taken at the Mayo Clinic, Kelly Orndorff smiles with bright optimism and good cheer despite a brain operation she had just endured.
