A face of cancer
PIPESTONE -- Bright eyes, pink cheeks and a ready smile. It is a beautiful face, and it stands many feet high on billboards in several locations around Sioux Falls, S.D.
It is the beautiful face of cancer.
Eighteen-month old Jordyn Olsen of Pipestone can be seen on four billboards in Sioux Falls for the Cure Kids Cancer Foundation and Sanford Children's Hospital, advertising a radiothon to raise funds and awareness. According to her mother, Jodie Olsen, Jordyn was chosen for the billboards by the Children's Miracle Network because of her contagious smile and sparkling personality.
The billboards, which show Jordyn from the waist up, bear the words, "She's battling cancer. So are we."
Jordyn was diagnosed with neuroblastoma when she was less than 1 year old. Now, she is in a hospital unit beginning a final round of chemotherapy before she undergoes a stem cell bone marrow transplant.
Born in mid-July 2006 to Justin and Jodie Olsen, Jordyn started to get sick when she was 6 months old.
"She would run fevers and developed a bump on her forehead," Jodie explained.
Local doctors told the Olsens it was either a birthmark bump or a subdural hematoma. If it had not gone away by the time she turned 1, they would look further into it.
In early June 2007, the Olsens decided not to wait any longer and brought Jordyn to the Sanford Children's Hospital in Sioux Falls.
"They did some testing and biopsied the bump," Jodie said. "Then they did some scans and found a larger tumor in her pelvis."
On June 17, doctors told Jodie and Justin their daughter had stage IV neuroblastoma, which meant the cancer had already metastasized to other parts of her body.
Neuroblastoma, the most common cancer in young children, develops in tissues that make up the sympathetic nervous system -- the system of nerves that regulate heart rate, blood pressure and digestion. According to the American Cancer Society, about 650 people are diagnosed with neuroblastoma each year in the United States.
"It was hard at first," Jodie said about handling the news her youngest child had cancer. "But we said, 'OK, she has this, now what do we do?'"
One thing the couple decided early on was to stay positive.
"The better attitude you have, the easier it is to handle," Jodie explained. "So maybe today was a bad day, but we have tomorrow. Or we think, 'We survived today, we'll do it again tomorrow.'"
In the beginning
Justin and Jodie met while they were both in the National Guard. Justin is still in the Guard, but Jodie finished a six-year hitch the day before Jordyn was born. Both attended Minnesota West Community and Technical College. Justin, who was studying to become an electrician, was an All-American defensive tackle for the Bluejays. Jodie, originally from Luverne, was in the law enforcement program.
They married and moved to Pipestone, where Justin joined the family business, Olsen Electric, with his father. Jodie, who had finished all of the law enforcement requirements except skills because of her pregnancy, settled in to focus on being a mother to Jordyn and to her 3-year-old daughter, Brenna.
After Jordyn was diagnosed, their lives changed dramatically. Extended hospital stays for rounds of chemotherapy had Jordyn battling nausea. Problems with central lines and infection caused additional doctor visits and overnight stays, and platelet and blood transfusions became almost commonplace.
Throughout it all, the journal entries by Jodie on Jordyn's CaringBridge site were all upbeat and full of praise for her daughter. A comment about a trip to the hospital to replace a leaking catheter is preceded by "What a great weekend!" Entries about preparing for another hospital stay mention Jordyn's spirit.
"She sure is being a little trooper!" Jodie wrote. "Jordyn keeps smiling, which helps us a ton."
Nights when the sick little girl could not sleep are tempered with comments about how great Jordyn would be at working the graveyard shift some day.
Day by day
In August, the Olsens were told the tumor in Jordyn's pelvis was growing, so an aggressive round of chemotherapy was planned.
"We have a long road ahead of us, but not an impassable one," Jodie wrote.
Low hemoglobin and a staph infection stretched the hospital stay out much longer than was planned. Blood and platelet transfusions were needed, but by the end of the month the family got to spend a couple nights at home before heading to the University of Minnesota to learn about the upcoming harvest of Jordyn's bone marrow cells. Throughout September, there were numerous trips to Sioux Falls or Luverne for lab tests. Jordyn was plagued by infection and low blood counts.
Another trip to the Twin Cities took place in mid-September so the stem cell harvest could take place. Within days, Jordyn was back in Sioux Falls for more chemo. The family received good news by the end of the month -- the tumor in Jordyn's pelvis was shrinking.
The next two months were filled with quiet moments at home between doctor appointments, transfusions and hospital stays. In late October, Jordyn took part in the KTWB radiothon for the Children's Miracle Network. By early November, Jordyn was again fighting fevers and infection.
"She seems to be just so tired out and sad," Jodie wrote Nov. 5.
There was another round of chemo in November that seemed to go well. On Nov. 16, a quote appeared in the journal that summed up the Olsens' fighting spirit.
"Don't tell God how big the storm is, tell the storm how big your God is."
On Dec. 3, Jordyn underwent a surgery that lasted just less than 10 hours to remove the pelvic tumor. Four hours into the procedure, the surgical team was working on loosening the tumor from the muscles and organs throughout the abdomen. By late afternoon, the second stage of the surgery had begun. Jordyn was placed on her stomach and a piece of her tailbone was removed so doctors could come in from behind and remove more pieces of the tumor. About 80 percent of the tumor was removed.
A journal entry from late afternoon Dec. 4 states. "This afternoon when she opened her eyes, she looked right at Justin and said 'Owee, Owee.'" By Dec. 6, Jordyn's smile was back, as was her sunny attitude.
"Two steps forward, one step back," Jodie wrote on Dec. 8. "Late in the night Jordyn started to get fevers and there isn't much that seems to work in bringing them down. Her latest temp is 103."
By Dec. 10, Jordyn had to be sedated so doctors could do tests and change some of her lines. She had CT scans, which showed areas of lung collapse and pockets of fungus.
The Olsens were disappointed on Dec. 13 to learn they could not take Jordyn home as planned that day.
"Maybe tomorrow," Jodie wrote. "Most people think it's just one more day, but it's not. It's 24 to 36 more hours without sleep, irritability, frustration, waiting, worrying, wondering and wishing you were home. ... It's so much more than one day to us. It's not seeing Brenna, or sleeping in our own beds or getting our own mail. It sounds trivial, but when you can't do it, it is huge."
Jordyn was allowed to go home the following day, and the Olsens spent the rest of the month trying to gain some kind of routine and preparing for the holidays. Right before Christmas, Jordyn had her photo shoot for the Children's Miracle Network.
A local celebrity
In early January, Jordyn renewed her love of Cheetohs, was interviewed, along with her family, for the upcoming radiothon and formed her own fundraising team called "Jordyn's Hope." There was another round of chemo, and Jodie made a video about her daughter. It can be seen at www.youtube.com/jodieo25.
While Jordyn developed a serious Pedialyte habit, her parents, grandparents and sister worked on raising funds for the radiothon and just living life. An acquaintance offered to hold a Tastefully Simple book party to raise funds for Jordyn's team and Jodie ordered bracelets to sell as a fundraiser.
Then the billboards started to go up. Suddenly Jordyn's smiling face, bright eyes and little bald head were high up in the air and larger than life. The billboards are slated to stay up until March.
Throughout the rest of January, the Olsens watched Jordyn's blood count carefully and prepared for the transplant of the stem cell bone marrow.
Jodie quoted Tom Petty when she wrote, "The waiting is the hardest part."
By the end of January, the family was waiting for a unit to open up in the transplant area. That happened this week.
Now they have to go through four days of chemo, which will wipe out the ability to grow bone marrow in Jordyn's body and kill what marrow she has left. Several days later, she will have an infusion of her own cells.
Two to four weeks after the transplant, doctors will be able to tell if the cells grafted and are making marrow. If that does not happen, the search for a marrow donor may be the next step.
If the transplant works, there will be two weeks of radiation, some spot therapy on her pelvis, and then the wait for her blood counts to get back to normal.
"If the radiation doesn't get the tumor, then we have to look into another surgery," Jodie said. We'll just have to wait and see."
"She's goofy, she's funny, she's always smiling," Jodie said of her daughter. "She's a daddy's girl and very animated. She's a spitfire."
Jodie said she does not think about Jordyn not coming through the fight with cancer.
"I don't think that way," she explained. "It has never been a question of if she's going to make it."
So what is the question?
"When are we going to be done with everything," Jodie answered.