Four months have passed since 8-year-old Essence Leach of Fairmont was diagnosed with bone marrow failure syndrome. Since then, her mother, Jamie Urban, has undergone a crash course in the diagnosis and treatment of the condition.
With her concentration centered on a video game, Essence pays little attention as her mother gives an update on her status, skillfully translating now-familiar complex medical terminology into layman’s language.
Essence was exhibiting unusual bruising that prompted a doctor’s visit right after Christmas. Testing eventually revealed she had a gene mutation that causes a decrease in bone marrow, where blood cells originate, and a decrease in platelets, the tiny cells that help blood to clot. Her platelet count was 5,000 while a normal count is from 150,000 to 600,000.
The condition can advance to acute myeloid leukemia, which Urban called “very aggressive, very fast.”
“So we’re going to do a bone marrow transplant before it gets to that point, but because of the gene mutation, she’ll always be at risk for leukemia,” Urban said.
Essence, a third-grader at Martin County West in Trimont, is now being home-schooled. She had to give up her beloved gymnastics competitions as a member of the Martin County Magic team, but with little prompting, she happily demonstrates an impressive cartwheel and a graceful back bend.
“She’s always been super active, but if she were to get a cut, she could bleed out,” Urban said. “If she hit her head, she could have a brain bleed because her blood doesn’t clot. If she were to hit her stomach, she could have internal injuries. Yesterday, she dropped a hairbrush on her toe, and it was an instant bruise.”
Urban and her mother, Sharon Scheff, take Essence to Children’s Hospital in Minneapolis once a week for platelet transfusions.
“My mom keeps me sane. I wouldn’t have been able to go through all this without her,” Urban said.
About a week ago, Essence underwent lab work to prepare for the bone marrow transplant and to find the best donor match.
“Of course, the transplant has to be approved by her insurance,” Urban said. “That process will take about three weeks, and we’re only in week two now.”
Once they get insurance approval, the bone marrow transplant will be scheduled as quickly as possible. Essence will spend five days at the University of Minnesota Hospital, one of the country’s largest treatment centers for patients with bone marrow failure syndrome, to make sure her organs are healthy enough for chemotherapy. She will be released for a few days and return to the hospital for five to eight days of chemo.
“That will wipe out her entire immune system. She will have no red cells, no white cells, no platelets. That will kill off all her existing bone marrow,” Urban said.
The chemo also will make her hair fall out so her teal, purple and pink-streaked blonde hair will be gone. When Urban learned her daughter would lose her hair, she agreed to the colors and to letting Essence shave the left side of her head, knowing the look would be temporary.
Essence will receive the donated bone marrow through an infusion port in her chest, a procedure that takes less than one hour.
“It will take anywhere from four to six weeks to actually get into her bones and start making new cells,” Urban said. “She will be in the hospital 35 to 40 days, and that is if nothing goes wrong.”
After she is discharged from the hospital, Essence and her mother will move to the Ronald McDonald House until 100 days after the transplant.
And if the stress and worry of her daughter’s medical situation weren’t enough, Urban must make adaptations in her home to protect Essence’s fragile immune system.
“When she comes home, her life will be very different,” Urban said. “She will still be very immuno-compromised. We have to redo the bathroom, redo the floors, and I’ve got to figure out some way to filter the air.”
Urban, a paraprofessional at Martin County West in Sherburn, has been on family medical leave since Essence’s diagnosis. That leave is about to expire, leaving her with no option but to quit her job to be with her daughter.
“I get it. I completely understand, but I miss the kids that I worked with, and I miss the teachers,” she said. “I absolutely love the teachers in Sherburn. They are some amazing people.”
Urban displays composure when she talks about the frightening times in her little girl’s life, but that isn’t always the case.
“I lose it in the shower all the time, but I honestly think she is stronger than I am,” she said.
Mom and daughter received a surprise this week from Lakyn Sathoff, who recently established Lakyn’s Care, a non-profit designed to help families experiencing situations like Essence’s.
“There are people in town that have contacted me and asked me to give you gifts,” Sathoff told Essence. She presented Urban with a $100 gas card and told Essence that she and her family would be going to the Great Wolf Lodge in Bloomington for a one-night stay to enjoy its huge water park.
Essence was thrilled with the idea of the water park and begged her mother to go this weekend. Urban said her daughter loves to swim, and the Fairmont Aquatic Park is her favorite summertime destination.
“We practically live there in the summer,” she said.
But Sathoff had one more surprise for Essence.
“It’s probably going to be the coolest thing you will ever experience,” Sathoff told the girl. “I’ve been in touch with the head coach of the Minnesota Gophers gymnastic team, and they are going to visit you in the hospital.”
Sathoff, who owns the Hair Etc. salon in Fairmont, also offered to give Essence a pedicure before her transplant so her toes wold look pretty when she was in the hospital.
“Can we do it tonight?” Essence asked, and Sathoff agreed.
You can follow Essence’s journey on the Facebook page “Super Essence.” There also is an account set up at Profinium to help the family.