UPDATE Jan. 26 — Shondie Green confirmed with Cedar City News Tuesday, while in the hospital laboring with baby No. 3, that Chanelle Hess-Green’s tests Monday showed her cancer is in remission.
Hess-Green’s oncologist, Jessica Mesnarich, told the family “her bone scan ‘looked beautiful’ and ‘clear,’” Green said in an email.
An echocardiogram revealed that there was no left-side enlargements that would be suspicious and the family is preparing for Hess-Green to have her “port-a-cath” removed from her chest. The “port-a-cath” is an intravenous device placed under the skin of a patient needing repeated chemotherapy treatments, blood draws or transfusions, antibiotics or IV foods.
“We then went to Shriners and adjusted her prosthetic and now she can stand up straighter and kick her leg out farther to walk better,” Green wrote. “‘heel to toe’ instead of a hop looking walk.”
Taken from Green’s Facebook wall posted Monday:
Chanelles scans turned out great!! She is officially in remission….!!!
Now we will schedule her next step and that is to get her port taken out hopefully next week sometime and continue going back out for her prosthetics and physical therapy regularly.
All the scans will continue now every 3 months for all these tests for the next year and continue to spread them out to 6 months, 9 months and so on until we hit 5 years from now.
CEDAR CITY — After 10 months of chemotherapy and a controversial surgery that involved removing cancerous bone in her femur, then rotating her leg backward and reattaching the healthy bone together, 9-year-old Chanelle Hess-Green of Ballard will learn Monday if her cancer is finally in remission.
Hess-Green had her surgery, called a rotationplasty, June 23, 2015, followed by a second surgery in July to address an infection that developed because the cut was so high up her leg.
Since then, her mother, Shondie Green, said, Hess-Green’s wounds have healed beautifully. She has completed chemotherapy, has regained her appetite and is gaining weight while getting used to her new backward-facing leg, her second prosthetic as she grows and ongoing physical therapy.
Hess-Green’s next milestone comes Monday when she and her family hope that tests will find her cancer in remission.
The biggest challenge for rotationplasty patients can be acceptance, Hess-Green’s surgeon, Kevin B. Jones, of the Huntsman Cancer Institute in Salt Lake City, said.
“It looks like you have your foot on backwards,” he said. “And that’s a fact — you do have a foot on backwards.”
But acceptance is no problem for Hess-Green who calls it her “Nemo leg.” She chose the surgery herself when presented with options – surgical options that freaked the family out a little, Green said.
One surgical option involved bone replacement with cadaver bone grafts or metal replacement; the other, rotationplasty, was a radical surgery that would utilize healthy material from her daughter’s leg to create a firm base to which the prosthetic would be attached.
For herself, Green said, it was a difficult decision. With the first option, her daughter would have to give up her active lifestyle and face years of additional surgeries. With the second option, her daughter could continue to play sports and be her usual energetic self – but, Green said, she couldn’t envision her child with her leg turned around.
For then 8-year-old Hess-Green, the choice was clear right from the very beginning, Green said. She chose rotationplasty.
“I think a lot of people can be perfectly happy with a mostly walking life,” Jones said. “But that’s a tough thing to do to a 5-year-old or an 8-year-old or … even a 10-year-old — they run by nature, even if we tell them not to.”
Rotationplasty; a little-known procedure
Rotationplasty can be a controversial topic in the medical field, Jones said.
“There are only about 50 to 100 surgeons in the U.S. who look after bone cancers,” he said. “A large number of them will not do rotationplasty, because they look at it as, ‘well, we have all of these technologies that are so great otherwise,’ but I think we just feel that, ‘yeah, there are newer technologies, but they don’t work better.’”
Orthopedic surgeons who perform rotationplasty consider the procedure to be a “biological reconstruction,” Jones said, meaning they use the patient’s own body to recreate what they will need in the future.
The surgery is done by removing the part of the femur that has cancer in it and dissecting the nerves and vessels away from the tissue, Jones said. Then they rotate the bottom portion of the leg 180 degrees and attach it to the hip, bundling up the nerves and vessels so they are secure.
The new placement of the foot allows it to act as a knee, he said, and gives a stable foundation for the patient to use a prosthetic leg successfully.
Spreading awareness about this little-known, but not new, surgery is key to helping patients and others overcome the notion that rotationplasty is a strange practice.
“What these children are choosing between is this and another surgery that’s, first of all, going to be one of many surgeries,” Jones said, “and second of all is going to be really (restrictive, because) they’re not going to be allowed to run and jump and play.”
Once people can look at it that way, he said, it opens up a whole new world of understanding.
Making the best out of the worst
Hess-Green was diagnosed with osteosarcoma in March 2015.
One evening while sitting on the couch, Hess-Green’s 2-year-old sister climbed across her lap and slipped, Green said. The baby’s elbow jammed into Hess-Green’s leg, she said, and a huge lump appeared immediately.
Her daughter had been complaining of leg pain, Green said. At first, she thought it was just growing pains or maybe sore muscles from the soccer season that just ended.
But when she saw that lump on her daughter’s leg, Green said, she knew something was very wrong.
Their pediatrician was from the East Coast and had experience with lumps like the one she described to him over the phone. He told her to bring her daughter in for testing right away.
His suspicions were confirmed, Green said: Her little girl had bone cancer in her left leg.
That week Hess-Green began a 10-month course of three different chemotherapies.
She was a superstar from the moment it all began, Green said, explaining how the bad news didn’t even seem to faze her happy-go-lucky child.
“There were times when she was comforting me,” Green said, “telling me it was going to be OK.”
Green knew that with the chemo would follow inevitable hair loss. So instead of allowing it to become a traumatic experience for her daughter they chopped their hair together.
“We did it in stages, dyed our hair funky fun colors,” Green said. “Then I found out I was pregnant and I had to stop dying my hair, but she did all kinds of fun stuff with hers until she eventually lost it.”
The primary decision-maker for what’s next is her daughter, Green said. She never kept the diagnosis from her. Instead, she told her everything about the disease, treatments and how they would impact her life, she said, so Hess-Green could help make informed choices for her own future.
There were times when Hess-Green was very weak, Green said, and she had lost so much weight by July 2015 that you could see her ribs. She even had to discontinue school because she was too sick sign into the homeschooling program every day.
Despite her physical ailments Hess-Green’s upbeat attitude never wavered, Green said.
The journey has been a long one that won’t be over for years to come, Green said.
“When they say, ‘Oh, I bet you’re glad it’s going to be done …,’” Green said, “We’re not going to be done for years.”
Her daughter will have scans every 2 to 3 months for the next year and then gradually fewer over the next several years to make sure the cancer hasn’t returned.
Hess-Green’s final round of chemo was Dec. 5, 2015. Since then, she has started to get her appetite back and is rapidly gaining weight.
“She was in a size 8,” she said. “Now her 10-12s are getting tight so I bought her a size 14.”
There is still a long road of physical therapy, scans and prosthetics ahead, Green said, noting that her daughter has already outgrown her first leg. They know a 16-year-old boy who has gone through nine legs since he had his rotationplasty surgery.
“It’s better than having to have surgery over and over again as she grows though,” Green said.
Through it all, Green said, she has watched her daughter battle osteosarcoma with an infectious smile, courage and strength beyond her years. The new friends they have made along the way say they are awed at Hess-Green’s grace in the face of adversity, she said, adding that her composure is a testament to a bright future ahead for her daughter.
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Copyright St. George News, SaintGeorgeUtah.com LLC, 2016, all rights reserved.
Copyright St. George News, SaintGeorgeUtah.com LLC, 2016, all rights reserved.