6-year-old Osage girl battles six-year-old cancer
When Carol Jokela talked to her granddaughter Lydia Sanderson Thursday morning, Lydia was very excited to be going shopping for an air popper so she could have some popcorn.
While it may be typical for a youngster to be excited to go shopping and be able to enjoy some popcorn, Lydia is anything but a typical little girl.
Since she was 7 months old, Lydia has been living with brain cancer. Now 6 years old, she has been through chemotherapy, surgery, seizures and -- coming soon -- radiation, and her family is looking for nothing short of a miracle.
"They're hoping they have arrested the growth," Jokela said of Lydia's radiation, which will be done in mid-February. "Anything more than that would be fantastic."
Born a healthy and happy baby, it wasn't until Lydia was 7 months old that her parents noticed something was wrong.
"Her eyes were shaky. They didn't stay still," Jokela describes as the first sign that something was wrong with her granddaughter.
When Lydia's parents, Annette and Derrick Sanderson of Osage, took their daughter in for her well-baby check-up, the doctor said Lydia's head was growing too quickly. They performed some tests, and her brain tumor was discovered.
Doctors inserted a shunt -- which is a passage that allows fluids to move from one part of the body to another -- into Lydia's stomach to drain fluids from the brain tumor, but "her stomach couldn't process it and she blew up like a little Michelin baby.
"It's been ups and downs for years," Jokela said.
Doctors then moved the shunt to her heart and started chemotherapy treatments. It was too far for the family to drive to the hospital in the Twin Cities for the treatments, so they instead drove to Fargo for chemo.
"They went to Fargo for two treatments and on the second treatment, the doctor said, 'I won't treat her anymore, she's not going to make it to her first birthday,'" Jokela said, becoming emotional when recounting her young granddaughter's health.
"So they brought her home and went for a couple other opinions."
The doctors at the University of Minnesota in the Twin Cities said they could give Lydia oral chemotherapy treatments that the Sandersons could give her at home. Jokela said that treatment took place for about a year and a half until Lydia was old enough to have a port inserted and could take a different form of chemo treatment.
"They said right in the beginning they wouldn't do radiation because of her age -- it would do more damage than good."
With Lydia's port in place, the Sandersons traveled to the Cities every other week for about four years.
During her treatment, the tumor would stop growing and doctors would let her go off chemotherapy for a period of time. For a couple times she got to be off the treatment for about six weeks, Jokela said.
"She went one time for three months and then it started growing again, so she went back one. Each time was a different make up of chemo."
About a year ago then, the doctors were impressed with Lydia's tumor and the fact that it wasn't growing anymore so they cleared her to go to school.
"Her vision was low because of where the tumor is located, but she could see to get around ... played like a normal kid. During the summer months, though, they said it was growing again."
Lydia started a new type of chemo treatment then, but for the first time, the tumor doubled in size after about six weeks of being on the treatment. Doctors changed the chemo, and three weeks later, Lydia started having seizures.
It started happening while the Sandersons were home in Osage, and over the phone, the doctors said they needed to get Lydia's brain swelling under control before they could do anything. It was at night though, with no 24-hour pharmacies around the area.
"They managed, after a lot of phone calls, to get the emergency room in Park Rapids to dispense some medication to stop the swelling."
It was about three days then before they could get to the Cities for an appointment, and when they got down there, the doctors told the Sandersons that Lydia's tumor had again doubled in size.
Given no other choice, the doctors performed surgery on Lydia in October of last year, removing 70 percent of the tumor. They told Lydia's parents that they thought the remaining 30 percent of the tumor was dead.
The tumor was unable to be completely removed because of its location. Jokela said it is embedded between the two halves of her brain and touches the nerves to both of her eyes.
"After the surgery, she had to relearn how to walk, use her arms, and her speech was kind of like a stroke patient. Her speech was not good but coming along, lots and lots of therapy," Jokela said. "She was just getting back to herself -- well, far from it, but better than it was -- and she started having seizures."
Doctors did a CAT scan and the part of the tumor they thought was dead was in fact alive and growing.
The next option: radiation. The Sandersons have moved their family -- Lydia has a younger sister and younger brother -- to a Ronald McDonald House in the Twin Cities to be with Lydia as she goes through 30 rounds of radiation.
"Right now she's very worn out, tired," Jokela said of Lydia. "In radiation, they have a fatigue scale, and hers is getting right up there."
And she's only on about No. 10 out of 30 treatments.
Jokela said that despite the fact that most of what Lydia has known in her life is sickness, pain and hospitals, "she's very happy." She said she gets to talk to her granddaughter over the phone on a regular basis, and that Lydia got to come home for Christmas.
Annette (Lydia's mom) stays with Lydia in the Cities, and Derrick (Lydia's dad) and the other two children come back to check on the house and give the kids a break from the way of living they have had to adapt to at the Ronald McDonald House from time to time.
When her treatment is done, Jokela said that Lydia hopes to be able to return to school because she enjoyed being there so much last year.
To read more about Lydia, visit her Caring Bridge website at caringbridge.org/visit/lydiasanderson.
Donations for Lydia and her family can be sent to TruStar Bank in Park Rapids, or donations of gas cards can be sent to their home address at 19000 Co Hwy 47, Osage, MN 56570.