Early last summer, the lives of Jeff and Jennifer Richmond and their children, Tyler and Kaitlin, were normal. The family moved into a new house on five acres near Coupeville, Jennifer attended her 10th high school reunion, the family went on a camping trip to Oregon for 11-year-old Tyler, and in July Kaitie celebrated her third birthday.
“Life is always great until everything turns upside down,” Jennifer Richmond said last month in Seattle.
That comforting normalcy ended Aug. 22, 2002, when Kaitlin was diagnosed with neuroblastoma, a virulent childhood cancer. She was in the most advanced stage.
Neuroblastoma is one of the most common tumors of early childhood. This cancer of the nervous system usually starts around the adrenal gland, near the kidneys. Most patients have widespread disease at diagnosis. Treatment is harsh and typically lasts 12 months — if the child lives that long. Neuroblastoma also has a very high relapse rate.
After months of treatment, Kaitie’s doctors estimate her odds of staying cancer-free for five years at 50 percent — if final radiation leaves her system totally clear. That’s better than the 20 to 30 percent chance they gave Kaitie just months ago.
A CAT scan in December showed no residual cancer in her abdomen. A bone scan showed spots of cancer still active in her femurs and pelvis. Results of a more sensitive test give doctors hope that the spots are only healing bone, not active cancer.
“You’re always hoping doctors will tell you, ‘It’s all gone. Go home. You’re done with treatment,’ ” Jennifer said.
Kaitie has months of hospitalization, radiation and more tests before doctors declare her ready to go home.
“We’ve learned to live life as we go,” Jennifer said. “We can’t forget that while we are here we are living and creating memories.”
Stem cell transfer done
Kaitlin could get an entirely new life if her stem cell transplant is successful. On Feb. 26 the Coupeville preschooler began receiving stem cells during a two-day transplant procedure. New stem cells would give her an entirely new immune system.
A few days before, high doses of chemotherapy were pumped into her to kill any remaining cancer cells — along with her immune system.
Doctors say high-dose chemotherapy and stem cell transplants are such drastic measures the treatment is called “rescuing.” And there’s no guarantee it will work.
If the new stem cells take over, Kaitlin will have the immune system of a newborn, susceptible to any germ or virus. She’ll need new immunizations.
“Lots of people consider transfusion day a new birthday,” Jennifer said.
She and her husband say they are lucky to live near Seattle. Children’s Hospital has one of the most highly rated pediatric cancer centers in the country.
And Ronald McDonald Northwest Charities provides safe living areas while a child is having treatment. Since August, Jeff, Jennifer, Kaitie and Tyler have lived at Ronald McDonald House in Seattle.
“It’s hard to keep a family together here,” Jennifer said. “But I knew I could not do this without Jeff.”
The couple also is thankful for everything their employers at Whidbey Island Bank and Nichols Brothers Boat Builders have done for them.
“Everyone at both businesses has been so wonderful to us,” Jennifer said. “We were told to do whatever we had to do for Kaitlin and not to worry about jobs.”
Whidbey Island Bank established a fund for Kaitie and continues to contribute to it, as do workers at Nichols Brothers, Freeland.
How it began
Kaitie went through several bouts with stomach trouble last summer. Looking back, Jennifer said the camping trip made her realize just how badly Kaitie was feeling.
“We all had a good time,” Jennifer said, “but when we were driving home I thought about how Kaitlin had run a fever all the time. And she became very clingy.”
The girl was taken to local doctors, who thought she had an E. coli infection or mononucleosis. But her parents suspected something else.
“Jeff insisted Kaitlin have a CAT scan,” Jennifer said.
A doctor called the next day: The scan showed a mass in the preschooler’s abdomen.
“We were hoping and praying it wasn’t cancer. But we were pretty sure what we were in for,” Jennifer recalled.
The Richmonds had Kaitie at Children’s Hospital in Seattle by 11 p.m.
Today, Kaitie lives with a full schedule, but not the typical 3-year-old’s life of play dates, dress up and Disney movies. Kaitie’s time is occupied with chemotherapy, bone scans, blood work and radiation.
The Richmonds always carry a small red photo album with family snapshots: There’s Kaitie on a rocking horse at Christmas, Jennifer and Kaitie working in their new yard, and Kaitie beaming at her third birthday cake, blond hair curling over her shoulders.
After the cancer diagnosis, Jennifer had Kaitie’s hair cut into a short bob. One morning after chemotherapy began, Kaitie’s hair began falling out.
“She sat in the bed, pulling out hunks and laughing,” Jennifer recalled. “She didn’t want anyone helping her.”
Kaitie stashed her fallen tresses in a handbag her aunt had given her.
“When Kaitie looked at her head, she said, ‘Mama, now I’ll be a baby again,’ ” said Jennifer. “Lately she’s been saying she doesn’t want to grow up. She says she always wants to be a baby.”
“I want Mama to hold me forever and ever,” Kaitie whispered, snuggling close to her mother.
The Richmonds agree that Kaitlin is lucky. She hasn’t had setbacks that knock her off her treatment schedule. While she has had high fevers and has been on antibiotics, she’s been in isolation and no infection has taken hold of her system.
Likes nurses, not doctors
Despite having seven rounds of chemotherapy and the accompanying sickness and surgery to remove the tumor from her abdomen, Kaitlin acts a lot like any preschooler. She carries a backpack filled with toys, runs around and likes being read to or told stories. She shows streaks of independence — Kaitie loves her nurses but ignores her doctors.
Jennifer said Kaitie has never made eye contact with a doctor, not even when they talk to her.
“Doctors say that’s spunk, and spunk is good.”
But in her backpack, along with her toy horses, is an intravenous bag filled with a nutritional supplement that’s pumped through a tube into Kaitie’s chest 16 hours a day.
Kaitie generally has one good week a month when she feels like eating and playing, her mother said. Her parents have been extremely careful at the hospital to make sure treatment doesn’t make Kaitie feel worse.
The Richmonds found out the hard way how Benadryl, a drug commonly used to help manage pain, affects Kaitie.
“She hallucinated. She had night terrors,” Jennifer said. “Kaitie would wake up screaming for me to hold her, when she was already in my arms.”
Try to keep smiling
“We keep a smile on our face,” Jeff said. “We can’t let Kaitie see us get emotional. She’s in pain and needs us to be strong. She’s going through so much that we can’t let her see how much pain her being in pain gives us.”
Children’s Tylenol is the only medicine Kaitie will take without a fight.
“She knows the grape flavor will make her feel better,” Jennifer said.
Seeing medicine being forced on Kaitie is hard for Jennifer. Giving Kaitie the daily injections that boost her immune system is the hardest thing Jeff and Jennifer have to do.
“Sometimes both Jeff and I have been in tears. What would take one second takes one hour,” Jennifer said. “Giving that shot every night is awful. Kaitie kicks and screams. She hates it.”
The Richmonds have worked with a specialist to learn how to help Kaitie deal with her life.
“We’ve learned to offer her choices about the shot,” Jennifer said. “She can play on the floor, she can sit in a chair. We know that how she acts is her way of not giving up the fight and showing control over her life.”
Kaitie has little control over her life. Most of the time that she’s not receiving chemotherapy, she’s at the hospital having tests. Noted her mother, “We don’t have many days without an appointment.”
Kaitie wishes for a horse
Kaitie has never asked why.
“She only asks when. When can we go home?” said Jennifer.
Since August the family has been given more than its share of bad news, but Jennifer says they aren’t angry.
“God has not done this to us; He’s getting us through it. We don’t pray for miracles; that sets us up for disappointment. We have to make choices in how to deal with what life gives us. Only God can help us make the right choices.”
Recently, Kaitie became eligible for Make-A-Wish Foundation, an organization that grants wishes to children with life-threatening illnesses.
Kaitie wants a horse. The family has plenty of room to keep one at their home on Whidbey.
“We all miss home. Kaitie always asks me, ‘Mama tell me a story about Whibbely Island.’ So I tell her a story about being home with the dogs, in the yard, with our family and friends. It would be good to be home,” Jennifer said.
Kaitlin Rose Richmond celebrated Feb. 26, 2003, as her new birthday. Her wish for a “rebirthday” present from Make-A-Wish Foundation is a buckskin colt and plenty of fencing for the Richmond’s Whidbey Island acreage.
