MOJAVE – A nearly year-long battle against a life-threatening disease is almost over for five-year-old Cali Journagan, her final round of chemotherapy ended March 19.
Meeting with Cali and her family - her mother Adrianne, younger brother Samuel and grandmother Bonnie (her father Casey was at work) - at a Mojave restaurant on April 3, it's hard to imagine the bubbly and energetic girl with a big appetite is anything but healthy.
The only clues to Cali’s medical condition are the Disney character medical face mask she wears to ward off airborne pathogens and the sparkly baseball cap covering her hair loss from chemotherapy and radiation.
Although quite animated, Cali is also still a little shy talking to a stranger, confining most of her responses to nods of her head and yes or no answers. Her mother, Adrianne Journagan, fills in the story behind the events of her diagnosis and treatment.
By the end of the interview however, Cali is eager to talk, easily rattling off the family's home phone number and proper spelling of the family’s last name. She also talks about her desire to become a nurse someday.
"Sometimes at the hospital, I act like I'm changing daddy's dressings (bandages)," Cali says of ways to deal with the boredom of not being able to leave the hospital.
Going for a walk
Shortly before her fifth birthday Cali was out for a walk with her family when she started complaining of pain on her right side. The family had just moved from Mojave to Rosamond, her grandmother still lives in Mojave.
"We just thought it was cramps or something from the walking," said Adrianne Journagan.
By the next morning Cali was nearly doubled over in pain and her parents rushed her to Urgent Care in Lancaster.
Initially thought to be a blockage in her intestines or appendicitis, Cali was transferred to Antelope Valley Hospital.
"That's when they told us, it's not anything like that, it's a Wilms tumor," said Adrianne Journagan.
A Wilms tumor (also called Wilms' tumor or nephroblastoma) is a type of childhood cancer that starts in the kidneys. It is the most common type of kidney cancer in children. About 9 of 10 kidney cancers in children are Wilms tumors, according to the American Cancer Society website.
Additional tests revealed the tumor had grown to take up the whole side of her body from her right kidney to the lower portion of her right lung. The tumor was also now stage IV - meaning that it had metastasized and spread to other organs of the body the diagnosis stunned the family.
"At that point, it was serious. We were so distraught; we couldn't believe this was happening." said Adrianne Journagan.
“It started out really rough,” said Bonnie Journagan. “It was hard on all of us, we didn't think we'd get through the first few months.”
By this time, Cali needed to be transferred to Kaiser Permanente Medical Center in Los Angeles and would be in and out of the hospital for the next several months – including her fifth birthday, first day of school, Halloween and Christmas.
"We almost spent Thanksgiving in the hospital but we got out just in time," said Adrianne Journagan. "Then we went through some rounds of chemo and after they felt it was small enough, they did surgery and removed the tumor."
The surgery included removal of her right kidney and a portion of her right lung, followed by radiation treatments and more rounds of chemotherapy. A biopsy showed the cancer had not spread to her lungs, but that she was instead also suffering from Valley fever - a fungal lung infection.
The family estimates that Cali spent three out of 10 months in the hospital, staying for at least week each time. Sometimes twice a month and at least one extended stay for two weeks. Samuel would be dropped off at Bonnie Journagan’s house while Cali’s parents stayed with her at the hospital, her father commuting to work from wherever they were.
Adrianne Journagan was also documenting the experience on a Facebook page called Cali’s Journey.
On the mend
Although she is on the mend, Cali still has to be careful. She is more susceptible to other forms of cancer and with only one functioning kidney, must take extra precautions.
“Now she has to drink a lot more water so it filters her kidney,” said Adrianne Journagan. “She pretty much has to be extra healthy to protect that one kidney. For the next five years she'll have to get scans and ultrasounds every few months until she's 10. There's always the worry of another cancer occurring.”
On April 10, the family was informed that Cali will be able to have her Hickman line port - used to help with administering the chemotherapy - removed by the end of April.
“She’s been out riding her bike,” said Bonnie Journagan. “I have to slow her down a bit. We need to get her through the next couple months of the scans and plan a big birthday party. She wants to go back to school, she never got to enjoy that first day of school.”
Make a Wish
Representatives from the Make a Wish Foundation contacted the family while Cali was in the hospital.
“She was given four choices to make, then she gets to pick the one she wants most and they’ll tell us what they can do.”
Cali chose to either be a nurse for a day, to get a gift of Lego’s, to visit Disneyworld or to meet the singer Pink.
“She chose Disneyworld, so we'll see what happens now,” said Adrianne Journagan.
Adrianne Journagan said she learned a lot about strength while dealing with Cali’s illness.
“The biggest thing is not to worry so much,” she said. “I did worry a lot that something was worse than it was and I think that affected me. You have to be strong for them. As long as you're strong and they see you're strong, then they could fight it.”
Community support was equally important.
“We really appreciate all the support and thoughts and prayers,” said Adrianne Journagan. “It really helps our sanity to know that people are there when we need them, even if it's just to talk.”
“Just the small words of encouragement can help,” added Bonnie Journagan. “They can help get you through the next day, they next week, the next challenge.”
The next challenge for Cali is her birthday on June 27 and starting first grade in the fall.
“The doctor's given her the OK,” said Adrianne. “She hadn't even started school at all. I had actually just finished paperwork for her to be able to start school, then I had to get more paperwork for to start homeschool instead.”
The final two words on the experience come from Cali herself.
How are you feeling?
Are you happy to be out of the hospital?