A second birthday for Kaitie

Early last summer, the lives of Jeff and Jennifer Richmond and their children Tyler and Kaitlin were wonderfully normal. The family moved into a new house on five acres of Central Whidbey land, Jennifer attended her 10th high school reunion, the family trekked to Oregon on a camping trip for Tyler, and Kaitie celebrated her third birthday in July.

“Life is always great until everything turns upside down,” Jennifer Richmond said last month in Seattle.

That comforting normalcy ended August 22, when their lives changed drastically: Kaitlin was diagnosed with neuroblastoma, a particularly virulent form of childhood cancer. And she was in stage four of the disease — 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 kidney. Most patients have widespread disease at diagnosis. Treatment is harsh and typically lasts 12 months — if a child lives that long. Neuroblastoma also has very high remission rates.

After months of often painful treatment, Kaitie’s doctors at Children’s Hospital estimate her odds of staying cancer-free for five years at 50 percent. That’s if final radiation leaves her system totally clear. This is up from the 20 to 30 percent chance they gave her just a few weeks ago.

“Number wise, it doesn’t look good, but doctors tell us not to think in numbers,” Jennifer said. “They tell us ‘numbers are just numbers, someone is that 20 to 30 percent.’ ”

In December, a CAT scan showed no residual cancer in Kaitie’s abdomen. A bone scan showed spots of cancer still active in her femurs and pelvis. Results of another, more sensitive test give doctors hope that the spots are only injured, healing bone, not active cancer. That test, which involved injections of radioactive material followed two days later by another body scan, did not show active cancer remaining in her body.

“That’s good news, but you’re always hoping doctors will tell you ‘It’s all gone. Go home. You’re done with treatment.’, ” Jennifer said. Kaitie still has months of hospitalization, radiation and more tests ahead of her before doctors declare her ready to return to Whidbey Island.

“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 a transplant is successful. Wednesday, Feb. 26, the Coupeville preschooler began receiving life-changing stem cells over a two-day transplant procedure in Seattle. New stem cells circulating through her body would give her an entirely new immune system — hopefully one that’s free of cancer. Last week, high-doses of chemotherapy were pumped into her system to kill remaining cancer cells along with the little girl’s immune system.

If the new stem cells take over her body, Kaitlin will have the immune system of a newborn: she’ll be extremely susceptible to any germ, any virus that comes near her. She’ll need new immunizations.

Doctors say high-dose chemotherapy and stem-cell transplants are drastic measures. So drastic, they call the treatment “rescuing.” And there’s no guarantee the treatment will work.

“Lots of people consider transfusion day a new birthday,” Jennifer said. “But my mind won’t let me take all that in.”

Despite all the pain and hardship the Richmonds have endured, the family has stayed together. Jennifer and Jeff agree that they are lucky to live so close to 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. Some families staying at Ronald McDonald House split up: one parent stays with the child during treatment, the other remains at home and at work. Jennifer and Jeff have seen how hard that is on other families.

“It’s hard to keep a family together here,” Jennifer said. “But I knew I could not do this without Jeff with us.” Jeff and Jennifer also are thankful for everything their employers at Whidbey Island Bank and Nichols Brothers Boatbuilders 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. So do co-workers at Nichols Brothers in Freeland. At first, Jennifer planned to have 11-year-old Tyler remain on Whidbey Island with other family. “But he needed us as much as I needed Jeff,” Jennifer said.

Today, Tyler attends school run by Fred Hutchinson Cancer Center for children with cancer and their siblings. “It’s made a big difference in him,” Jennifer said. “He knows he’s not the only person his age going through this.”

Parents knew Kaitlin was sick

Kaitie had gone through several bouts with stomach trouble over the summer. Looking back, Jennifer said the camping trip made her realize just how badly Kaitlin was feeling. “We all had a good time but when we were driving home, I thought about how Kaitlin had run a fever all the time. And she became very clingy.”

Kaitie was taken to her local doctors, who at first thought perhaps the little girl had an E. coli infection or mononucleosis. But her parents suspected something else was wrong.

“Jeff insisted Kaitlin have a CAT scan,” Jennifer said.

A doctor called the Richmonds at work the next day: That scan showed a mass in the preschooler’s abdomen. The Richmonds had Kaitie at Children’s Hospital in Seattle by 11 p.m. “We were hoping and praying it wasn’t cancer. But we were pretty sure what we were in for,” Jennifer recalled. “We were very anxious to find out what treatment would be and get started.” But they had to wait a weekend for everything to be arranged. Doctors gave the family a day pass from the hospital and they went to Woodland Park Zoo.

Today, Kaitie lives with a full schedule but it’s not the typical 3 1/2 year old’s life of play dates, dress up and Disney movies. Instead, chemotherapy, bone scans, bloodwork and radiation occupy her time.

Kaitie has been in and out of Children’s Hospital since August. Between hospitalizations the family lived at the Ronald McDonald House. Recently, the Richmonds moved to an apartment overlooking Lake Union. They needed to seclude themselves from as much bacteria as possible before Kaitie began the high-dose chemotherapy that will destroy her bone marrow and her immune system. When that is finished, Kaitie will undergo two days of transfusions returning stem cells to her system. Before her initial round of chemo last summer, Kaitie went through three full days of her blood being withdrawn for stem cell harvesting. Then, as part of a research study she’s in, her stem cells were sent to Los Angeles to be “purged” or cleaned of any cancer fragments.

Kaitie may participate in another research study that would insert antibodies into her new immune system. Jennifer and Jeff Richmond aren’t sure yet what they will do yet. It would mean more hospitalization, more tests.

“We’re trying to get her on in Seattle,” Jennifer said from Seattle Tuesday. “But we need to know if it will give her quality of life or just extend her life.” Final radiation is one to two months away for Kaitie. “That seems so far away right now,” Jennifer said. “We’re trying to get to the stem cells.”

By Tuesday, doctors were concerned enough about Kaitie to consider putting her on the same antibiotics that had previously dropped her blood pressure to “almost zero,” Jennifer said. “Tuesday, Kaitie popped out with extremely itchy skin. That could mean bacteria are in her system or it could simply be the chemotherapy drying her out,” her mother continued.

Whenever the Richmonds find themselves in Children’s Hospital, they always make sure they have a photo album in Kaitie’s room. The small red album holds treasured family snapshots that remind them of times away from the hospital: Kaitie on a rocking horse at Christmas; smiling relatives; Jennifer and Kaitie working in their new yard; Kaitie beaming at her third birthday cake, blond hair curling over her shoulders.

After her diagnosis, Jennifer had Kaitie’s hair cut into a short bob. “We’d heard from other parents how a little girl’s hair would get matted and snarled,” Jennifer said. 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. “We have the bag saved; someday we’ll look for it,” Jennifer said.

“When Kaitie looked at her head, she said ‘Mama, now I’ll be a baby again.’ Lately she’s been saying she doesn’t want to grow up. She says she always wants to be a baby” Jennifer said.

“I want Mama to hold me forever and ever,” Kaitie whispered, snuggling close to Jennifer.

The Richmonds agree that Kaitlin is lucky in some respects. She hasn’t had setbacks that knock her off her treatment schedule, and while she has had high fevers and been on antibiotics she has 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, surgery to remove the tumor from her abdomen, and countless blood tests and body scans, Kaitlin acts a lot like any preschooler. 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,” Jennifer said. Kaitie carries a backpack filled with toys, runs around and likes being read to or told stories.

But in her backpack, along with her toy horses, is an IV bag filled with a nutritional supplement that’s pumped through a central line into Kaitie’s chest 16 hours a day.

“We’ve had a goal of Kaitie reaching 14 kilograms,” Jennifer said. “It was a big day when she got there.” It’s the heaviest — almost 31 pounds — Kaitie has ever weighed.

“Everyone measures progress in centimeters and kilograms,” Jennifer continued. Centimeters in a child’s height and the size of their tumor. Kilograms in weight lost during chemotherapy and kilograms regained when appetite returns.

According to Jennifer, Kaitie generally has one good week a month — one week when she feels like eating and playing. Jeff and Jennifer have been extremely careful at the hospital to make sure treatment doesn’t make Kaitie feel worse. “We’ve heard and seen all sorts of side effects from drugs in other children,” Jennifer said. “We’re very careful doctors and nurses tell us what they are giving Kaitie.”

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. Kaitie would wake up screaming for me to hold her when she was already in my arms,” Jennifer said.

Parents 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 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 child life 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 how she acts is her way of not giving up the fight and showing control over her life.” And Kaitie has very little control over her life. Most of the time that she’s not receiving chemotherapy, she’s often at the hospital all day having tests run.

“We don’t have many days without an appointment,” Jennifer said.

The weeks before what they hope is the last round of chemotherapy started, Kaitie was at Children’s from 8 a.m. to 4 p.m. having tests. From bone scans to X-rays to kidney function tests, doctors looked at everything. Doctors also tested her ears; high doses of chemotherapy can affect hearing. Jennifer said Kaitie shows some hearing loss but nothing that will require her to wear a hearing aid. Kaitie’s kidney function test had to be repeated so doctors could work out the exact dosage of chemotherapy. And doctors wanted to know how well Kaitie’s kidney was functioning. In December, doctors removed one of Kaitie’s kidneys because the remaining tumor had worked through the renal artery. By Tuesday afternoon, Kaitie was puffy from retained water. Her only kidney was being stressed so doctors cut back on medications.

Kaitie’s wish, a horse and home

Through everything, Kaitie has never asked why all this is happening to her. “She only asks when,” Jennifer said. “When can we go home?”

Since August the family has been given more than their share of bad news. But Jennifer says they aren’t angry. “God has not done this to us. He’s getting us through it,” Jennifer said. “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. This foundation grants wishes of children with life-threatening illnesses.

“We’ve talked to Kaitie about what she wants,” Jennifer said.

“At first she said she wanted to be Barney and go on an airplane. Later she said she wanted a horse.”

The family has plenty of room for a horse at their home on Whidbey Island. “We’re not supposed to push her to a decision. We need to find out what she wants,” Jennifer said.

“We’ll be sitting down in the next few weeks with Kaitie’s doctors to outline goals and potential outcomes. That will let all of us see where we are. Then we can think more on where we are going,” she said. “But 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.

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