By Kim Hilsenbeck.
With her upbeat personality and slightly warped – though never inappropriate – sense of humor, you might not realize two of Lisa Crane’s three children have life-threatening diseases. Her third child has challenges of his own.
For the past five years, Crane and her husband Stephen, who reside in Kyle’s Plum Creek, have been living on pins and needles. Their now five-year-old son Sebastian, nicknamed Ash, was born with hypoplastic left heart syndrome, or HLHS. Essentially, the left side of his heart didn’t form during the pregnancy.
Ash underwent three major heart surgeries, the first at two days old. His next surgery was at six months, the third at about two and a half years old.
“We were told he could die between the first and second surgery,” Crane said in a recent phone interview.
But Ash made it through. Each procedure re-routed veins and arteries in his body to compensate for not having the left ventricle.
“They jerry-rigged it,” Crane said. She chuckled. “It’s a good jerry-rig.”
“It’s like the heart is a four cylinder engine, but his is acting like a two cylinder,” Crane said.
He’s had a few setbacks along the way, such as an infection, along with the need to repair some of the re-routed veins and arteries using a heart catheter and once through his neck, which left two holes.
Crane said Ash loves to be called a vampire zombie because of his heart and all the pokes and prods and surgeries, and the neck holes.
“We joke about it because it keeps us sane,” she said with a laugh. “It is what it is.”
The family had to move from Colorado to a lower altitude to help Ash. They picked Texas because of the proximity to the children’s hospital in Houston, and Crane’s ability to transfer to the Austin area with her job at Progressive Insurance.
A side bar revealed humor is one way the Crane family deals with what life throws at them.
Crane was telling her family’s decidedly unfunny story from outside the hospital room of her daughter, Emmalee, 9, who is nine weeks into a 36-week course of chemotherapy. She has rhabdomyosarcoma – a rare childhood cancer.
At five months old, Emmalee had a mass coming out of her vagina. That was Christmas Eve day. Doctors said the tissue was too necrotic to test but they didn’t think it was cancer.
The Cranes put the incident out of their minds. This past summer, it resurfaced.
Emmalee complained of stomach pains while visiting family in Colorado Springs. Doctors said it was constipation and sent her home with an enema. Three trips to emergency rooms in three different cities later, Crane finally told doctors she wasn’t leaving until they did more tests to figure out what was wrong.
That was on Emmalee’s ninth birthday.
“[The other ERs] did a CT scan but they were just looking at her bowels,” Crane said. “They kept brushing it off as constipation.”
An ultrasound at Dell Children’s Hospital in Austin revealed Emmalee’s bladder was the size of a filled water balloon.
“It was cutting off her urethra,” Crane said.
Crane said doctors found a three-centimeter tumor on Emmalee’s bladder and performed a biopsy.
Here: Embracing life The Crane family of Kyle at Halloween this year. In the caption on Caring for the Cranes Facebook page, Lisa Crane wrote, “Embracing life! Dr. Dominic (left) and his patients.” Lisa, her husband Stephen and their youngest son Sebastian, 5, who has a congenital heart condition, all shaved their hair off to support Emmalee, 9, who is battling a rare childhood cancer. Lisa said one way the family deals with adversity is humor. At top: Emmalee, Stephen, Dominic, Lisa and Sebastian Crane of Kyle’s Plum Creek neighborhood found an outpouring of love and support from neighbors and church members as one child battles a rare childhood cancer and another fights a potentially terminal heart disease. A benefit this Sat. will help raise money for the family. (Courtesy photos) |
“They said it was not cancer,” Crane said. “They wanted to [surgically] remove the tumor,” she said. “That didn’t sit well with me. It didn’t sound right. They sent her home with meds and a catheter.”
So at the end of August the Cranes took their daughter to Houston’s MD Anderson Hospital for a second opinion. Tests confirmed Emmalee has rhabdomyosarcoma, a soft tissue cancer.
“In children,” Crane said, “it’s rare – maybe five percent of childhood cancer cases. In the bladder, it’s more rare.”
During the course of chemotherapy, Emmalee will also have six weeks of radiation treatments.
Crane said her little girl is holding up as well as can be expected. Losing all her hair was emotional, causing her to not want to go out. Emmalee receives home bound instruction, which is funded by Hays CISD, from Negley Elementary School teacher April Starnes, who volunteered for the job.
Throughout the past few months, Crane said her family received so much love and support from neighbors, church members and strangers.
“Every time we have chemo, someone brings us a meal. People mow our lawn. [Middle child] Dominic feels left out, so people take him on play dates.”
Crane said one organization did a room makeover for Emmalee while the family was at the hospital.
“Horses are her favorite,” she said.
Doctors gave Emmalee a 60 to 70 percent survival rate, Crane said. But even surviving cancer won’t leave her completely in the clear.
“We’re learning about the consequences of the chemo,” Crane said. “One drug makes you sterile.”
Crane recited a list of other potential problems: hip problems that require surgery to correct them, reduced blood supply since radiation kills off veins, bladder problems that could require a permanent catheter.
“We’re nine weeks into it,” Crane said.
How is Emmalee’s reaction thus far?
“She’s normally pretty good. Last night she was very nauseous for the first time,” Crane said.
They have to go to the hospital after every third treatment to prevent dehydration; she gets fluids at home each night.
Does Emmalee understand what’s going on?
“I don’t know if she realizes the severity of it. I don’t want her to,” Crane said. “Her personality is much different. She doesn’t know what she’s mad at or why she’s sad. She’s just coping with it and going through the five stages – mourning, anger, acceptance, etc.”
Doctors recommended an anti-depressant and talk therapy to help Emmalee with her feelings.
How are Crane and her husband holding up?
“Stephen’s dad died of cancer when [Stephen] was 16,” Crane explained. “The kids’ medical trauma has been hard for him. But he’s been really great.”
She said he’s there with her, sitting and playing with the kids, administering IV meds, getting up with kids in middle of night.
“He’s our rock.”
The Crane’s other child, Dominic, doesn’t have a life-threatening disease but he was diagnosed with senso-processing disorder at 18 months old.
“His mind can’t figure out where his body fits in space,” Crane explained. “Loud noises bother him.”
Crane said Dominic, 7, is the mature, responsible sibling.
“He’s my strong little boy,” she said. “But he wants to go to doctors and hospitals. We take him out and spend time with him but it’s never enough time. He’s well liked at school.”
Crane takes each issue, each setback in stride, but she said some days, she feels a little gipped.
The support and help from friends and neighbors, who also recently organized a fundraising benefit, has been one source of strength for Crane.
“It’s amazing how big [the outpouring of love and support] has been,” Crane said.
Benefit for the Crane family
Caring for the Cranes is a team of friends and neighbors who want to help Lisa and Stephen Crane and their three children, Emmalee, Dominic and Sebastian.
A benefit this weekend at Texas Old Town, who donated use of the facility, will help the Crane family of Kyle as their little girl endures 36 weeks of chemotherapy (along with six weeks of radiation) to fight a rare childhood cancer; meanwhile, their five-year-old son has a severe heart condition and will likely need a transplant later in life.
The event takes place from 3-7 p.m. this Saturday, Nov. 16, at Sage Hall at Texas Old Town in Kyle.
Caring for the Cranes will include a silent auction that runs from 3-6:45 p.m. Donated items include:
* A party at Texas Old Town (within the next three months)
* Two trip packages; One to a cabin on the Frio River and the other to a beach house at Galveston
* Bundles of family games
* Massage gift certificates
* Store and restaurant gift certificates
* Quilts
* Buda YMCA membership
* Karate membership and uniform
…and much more
Dickey’s BBQ in Kyle donated all the BBQ plates for the benefit, however, those plates sold out. Many concessions will be available from several other vendors during the benefit, including Pokejos sausage wraps, Dominos pizza, Chick-fil-a sandwiches, homemade goodies, popcorn, cotton candy and drinks.
To donate to the Crane family or purchase a T-shirt, visit www.caringforthecranes.com.
