Iron Man Ian
By George Stinnett
Ian Larmore is more determined than ever to live life to the fullest after his incredible battle with cancer.
Ian Larmore is one tough guy. His parents even call him “Iron Man.” So when Ian complained of pain after a rough and tumble day of play one Saturday in March 2006, Nemo and Stacey Larmore knew there was something wrong with their 3-year-old.
“It was unusual, so we decided to take him to CHKD, where they know all about children,” Nemo said.
The CHKD emergency center specialists suggested some tests, but when Ian’s pain seemed to subside, his parents decided to wait for an already scheduled visit with their pediatrician the following Monday.
The next night, however, an intense outcry from Ian prompted a return trip to CHKD. This time, CT and ultrasound tests were done revealing a grapefruit-sized mass in Ian’s lower abdomen. Emergency room physician Kelli Petronis stayed past the end of her shift to deliver the news and get Ian the help he needed right away.
“You could see the pain on Dr. Petronis’ face,” Nemo recalled. “She took us immediately to the hospital’s cancer clinic.”
Within minutes, the stunned parents met childhood cancer specialist Eric Lowe, who explained that the tumor required surgical removal and an extensive course of chemotherapy and radiation. Ian was admitted right away to CHKD’s eighth-floor cancer unit. And pediatric surgeon Samuel Mahaffey joined Dr. Lowe to plan a strategy that would include immediate surgery.
“We were shocked beyond words,” Nemo said.
First, Dr. Mahaffey performed surgery to take tumor tissue for a biopsy to determine the type of tumor and the extent of involvement with other organs. He discovered the tumor had encased the left ureter and an artery and had grown through Ian’s colon near the rectum. Pediatric urologist Louis Wojcik was called in to place a temporary stent through the ureter for kidney drainage.
Tests revealed the tumor was rhabdomyosarcoma, a type of soft tissue tumor that accounts for some three percent of childhood cancers. About 350 children in the U.S. are diagnosed with the tumor annually.
So Ian returned to surgery with Dr. Mahaffey to remove as much of the tumor as possible. During the 13-hour surgery, the surgeon dissected the tumor away from the attached artery and removed the affected ureter, kidney and a portion of his lower colon. He reconstructed the colon and re-attached it to the rectum.
But within 24 hours, a blood clot developed in Ian’s leg. Then bleeding erupted from the artery where the tumor had been attached. Ian had to go back for more life-saving surgery for each of these conditions.
“It was an incredible effort by the PICU and surgical staff to keep Ian alive,” Nemo said. “And Ian kept fighting too.”
As Ian recuperated from the two surgeries in the PICU, a new threat arose. A hole developed where the tumor had been in his colon. Intestinal material was draining into Ian’s abdomen causing a low-grade infection. Complications mounted as surgeons returned him to the OR and found that the tissue in the bowel was not healthy enough to hold the repair.
A tough decision now confronted them.
They could continue efforts to repair Ian’s leaking intestines and the open wound in his abdomen, or they could start the essential 42-week course of chemotherapy. Time was important for beginning Ian’s battle with cancer. But starting chemotherapy and suppressing his immune system could increase the risk of infection to the wound and cause further complications.
It was quite a conundrum, but the choice soon became clear. The cancer could kill Ian if it weren’t contained. Despite the challenges, cancer treatment had to begin right away.
Still in the hospital, Ian began several aggressive courses of increasingly stronger chemotherapy, then was given a five-week course of daily radiation treatments. The nursing staff, with the help of his family, cleaned and dressed his surgical wound and drainage site at least every two hours to help prevent infection. And the OR team cleaned the site surgically every few days.
“The oncology and surgical teams worked wonderfully together,” Nemo said. “And we were blessed to have a dedicated network of family and friends to help us. Ian never spent a moment during that first string of 296 days at CHKD without someone close to our family at his bedside.”
“Ian’s family and the nurses are the real heroes of this story,” Dr. Lowe said. “It was the frequent dressing changes that helped prevent any infection and got Ian through his treatment.”
The child life specialists worked hard to keep Ian busy with activities. Ian and his brother, Townsend, then 6, love baseball, so hundreds of games were played in a family lounge with a plastic ball and bat, along with staff, family and other patients joining in. Ian also loved working with the physical, occupational and speech therapists in the hospital therapy gym as they dealt with physical side effects from his extended PICU stay and chemotherapy. And nutritionists, nurses, chaplains and social workers supported Ian and his family and came to know them well during the long days during his hospitalization.
“Everyone at CHKD worked hard to keep Ian’s progress moving forward,” his mom said. “Everyone was incredibly engaged and supportive.”
Ian’s oncologists encouraged short trips outside the hospital to places like Waterside, the zoo, church, home for Father’s Day and Christmas. On one special trip to Harbor Park near the end of the 2006 baseball season, Ian “ran” the bases after the game with the help of his father and the Tides’ head groundskeeper. He completed the last 15 feet across home plate by himself and to the cheers of several hundred fans who had stayed to watch.
By the end of December, nine months after his original diagnosis, Ian’s chemotherapy was complete and his discharge home arranged. He went home to Virginia Beach to recover and get stronger for what the family hoped would be his final surgery.
As the date for the April reconstructive surgery approached, Ian had a CT scan to check for cancer cells. The results dealt another scare. There were two spots on Ian’s lungs, which Dr. Lowe explained could be a recurrence of the cancer. Rather than perform the surgery they hoped for, the surgeons might have to remove the tissue from the lungs and start the cancer treatment over again.
Ian’s parents decided that whatever the outcome, they first wanted Ian and Townsend to have a happy memory they could always share together. They were granted an emergency Make-A-Wish trip, including Ian’s nurse, to Disney World in Orlando, where they spent a glorious week.
Perhaps, it was the “Magic Kingdom” that made the difference. But when they returned home, a follow-up scan showed the spots on Ian’s lungs were smaller. It was a certain sign, according to Dr. Lowe, they were not cancer, but more likely scar tissue from pneumonia he had suffered earlier.
So again Ian headed to surgery, where Dr. Mahaffey cut out the leaking section of small intestine and stitched it back together, then re-attached Ian’s colon to his rectum. But the repair didn’t hold, likely because the rectal tissue was weakened from the radiation. Dr. Mahaffey had to install a colostomy on the boy’s lower abdomen instead.
With the leaking intestine repaired and the abdominal wound closed, Ian’s life returned to a normal such as he hadn’t enjoyed for more than a year.
“Ian is a great kid,” Dr. Mahaffey said. “He showed a lot of courage for a child his age. A lot of children live normally and do well with a colostomy. Ian appears to be no exception.”
The oncologist agrees. “We’ll see Ian frequently in the cancer clinic over the next few years. He’s definitely a child who’s determined to beat this disease and live life to the fullest. And that’s what we expect,” Dr. Lowe said.
Now almost 5, Ian is doing just that. He attends Emmanuel Episcopal Day School and is active in swimming, gymnastics and “anything to do with a ball,” his mom said.
Ian’s mom also appreciates what CHKD has done for Ian and her family. “We’ve been given a lot, and we embrace CHKD as part of our lives,” Stacey said.
Both sides of Ian’s family – the Larmores and Bondurants – and many friends have shown their support of CHKD in a myriad of ways, organizing blood drives and fund-raisers so that others can have the same help Ian received.
They established an endowment fund at CHKD – the Ian Wilson Larmore Fund for Childhood Cancer – to benefit patients and families of cancer patients for years to come. The endowment is funded, in part, from donations as well as activities like church dinners and the annual “Iron Man Ian Golf Classic” at Heron Ridge golf course.
“As difficult as our journey has been, our goal is to give something to CHKD that will live on for the children and families of our community and make it even better for those who follow,” Nemo Larmore said. “We’re grateful for the opportunity to return the acts of kindness we received in this way.”
“We’ll always be involved with the hospital and work to give back as much or more than we received,” Stacey said.
Drs. Lowe and Petronis
practice at CHKD with Children’s Specialty Group PLLC. Dr. Mahaffey practices with CHKD’s Pediatric Surgery practice; Dr. Wojcik was formerly with its urology practice.
This story was featured in the fourth quarter 2007 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.