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by Mike O'Kelly
St. Jude helps budding golfer Brennan Simkins through his battle with a rare form of acute myeloid leukemia, which required four bone marrow transplants.
To win a tournament, a professional golfer battles an unrelenting course with such obstacles as deep roughs and sand traps. Adapting to changing winds or extreme temperatures, he stays mentally focused in order to fend off challengers for four rounds and enter the clubhouse as a champion. At age 6, budding golfer Brennan Simkins was beginning to display that kind of focus and tenacity.
But Brennan’s world would soon head in a different direction. Although he was dreaming of a future with four rounds of 18 holes each, his reality would consist of four bone marrow transplants in 18 months—and a life-threatening battle with a severe form of acute myeloid leukemia (AML) that would require the world-class treatment available at St. Jude Children’s Research Hospital.
Brennan loves golf. Several times, he and his brothers have attended the world’s most prestigious golf tournament, the Masters, with their parents, Turner and Tara. Known as the Band of Brothers, Brennan and his siblings, Nat, 11, and Christopher, 7, enjoy golfing with their dad, who jokes that his golf foursome was genetically created, since all three boys are golfers.
Brennan gravitated to the game early with an unusual focus on the short-game skills of pitching, chipping and putting. While other toddlers whacked golf balls as hard as possible, 3-year-old Brennan practiced for hours on the putting green. Soon people began to comment that his swing was one of the most natural they had ever seen. Today, unsure how he acquired his skill or determination, 9-year-old Brennan modestly explains, “I believe I can do something on the golf course, and I just do it.”
Usually energetic and full of life, Brennan began feeling lethargic and experiencing leg pain in November 2008. When X-rays revealed no problems with Brennan’s legs, a physician advised that Brennan have a blood check-up. During a subsequent family outing to the North Carolina mountains, Brennan did not feel well enough to play in the snow with his cousins.
“I remember going on a hike with Tara and her sister. All three of us had this gnawing feeling inside that something was wrong,” Turner recalls.
Tara took Brennan to the pediatrician for blood work when they arrived home. Later that day, the doctor called to say that additional tests were necessary. Turner and Tara explained to Nat and Christopher that they were taking Brennan to the hospital for more tests. They assumed they would return later that evening.
It would be more than a month before Brennan would return home.
At the local hospital, clinicians slipped warming gloves onto Brennan’s frigid hands to increase his blood circulation. A transfusion of four units of blood boosted his red blood cell count and restored his energy. The next day, Brennan celebrated his seventh birthday in an oncology unit while doctors sought the cause of his hospitalization.
After changing their diagnosis from acute lymphoblastic leukemia to aplastic anemia, doctors finally determined that Brennan had a rare form of AML marked by a 7q deletion. Most cases of AML are the result of genetic mutations. The 7q deletion occurs when chromosome 7 loses genetic material. Children with this mutation have an extremely poor prognosis.
Brennan underwent four rounds of chemotherapy before undergoing a bone marrow transplant. In May 2009, Brennan received stem cells from his older brother, Nat, who was a perfect match.
“Brennan and his brothers are best friends,” Tara says. “While Nat might have showed some signs of apprehension about what he was going to endure, he would always let go and focus when we got to the part about helping Brennan.”
Although the transplant was initially successful, a scheduled clinic visit in October revealed low platelet counts. A follow-up bone marrow aspirate confirmed the Simkins’ fears: the 7q deletion was present in 20 percent of Brennan’s cells. Brennan’s only hope was a second bone marrow transplant with an unrelated donor.
Because of the risks associated with a second transplant, only a small number of institutions perform them. With limited options available, Brennan was referred to St. Jude in November 2009, where he resumed chemotherapy treatments in an attempt to achieve remission before the transplant.
“When Brennan arrived at St. Jude, a bone marrow aspirate revealed that he had 50 percent immature leukemic cells, or blasts, in his blood,” says Jeffrey Rubnitz, MD, PhD, St. Jude Oncology.
“We first treated him with conventional chemotherapy. He tolerated the therapy well, but had no response. A bone marrow aspirate performed a month later showed he still had about 50 percent leukemic blasts.”
Since Brennan showed little response to conventional therapy, he was enrolled in an experimental protocol and received a more aggressive form of chemotherapy. At the conclusion of that treatment, Brennan still had 35 percent leukemic blast cells in his blood.
When he received results of the bone marrow aspirate, Turner assumed that a second transplant was now impossible. That evening, he took his son to the grocery store.
“I couldn’t focus on anything,” Turner says. “I was thinking, ‘This is the last time we are going to be coming to this grocery store. We are heading home and are going to be calling hospice.’”
That same night, Rubnitz called the family to deliver surprising news: St. Jude wanted to proceed with the transplant. Brennan would be the first patient to try a new transplant treatment developed by Wing Leung, MD, PhD, Bone Marrow Transplantation and Cellular Therapy chair.
The protocol involved total-body irradiation twice each day and administration of the drug plerixafor.
“Plerixafor is designed to collect patients’ stem cells for future autologous transplants,” Leung says. “Since it has the property of moving stem cells from bone marrow to blood, we predicted that it could also move leukemia from bone marrow to blood.”
Once in the bloodstream, the leukemia cells may become much more sensitive to the effects of radiation and chemotherapy.
In late January 2010, Brennan underwent his second transplant, receiving the stem cells of a donor whose identity is unknown to the family, but whose cooperation with an ever-changing situation was greatly appreciated.
A month after his second transplant, Brennan’s disease was again in remission. In June, he returned home to enjoy the summer months with his brothers. He donned a floppy hat, a mask and plenty of sunscreen to participate in a July golf tournament with his brothers, but could only muster a few holes before he felt the aches from osteopenia, a side effect of chemotherapy.
As autumn approached, Brennan slowly resumed the life of an 8-year-old boy—climbing trees and fences, tossing the football and looking forward to attending college football games. In late September, however, a bone marrow aspirate at St. Jude revealed leukemic cells.
The Simkins family met with Leung, who presented them with two options. The first choice was to do nothing; Brennan had already received more treatment than most children would ever receive. But Brennan and his parents decided to pursue the alternate option—a third bone marrow transplant using stem cells from Turner or Tara. This procedure, Brennan’s only hope, was extremely risky.
“We knew that the risks were greater, but Tara and I both wanted to be picked for the third transplant,” Turner says.
Turner’s cells were harvested for the third transplant, which occurred in early October 2010. Since only half of his cells were matched, there was a significant chance of Brennan acquiring graft-versus-host disease, a condition where the donor’s T cells attack the recipient’s tissues. However, a mild form of graft-versus-host disease is seen as beneficial in attacking the leukemic cells. Once again, plerixafor was used to push the blasts into the bloodstream, where they could be attacked by Turner’s cells.
Weeks after the transplant, Brennan developed a life-threatening viral infection, which led to inflammation in his brain and liver and the build-up of fluid in his lungs. He was placed on a ventilator in the hospital’s intensive care unit, where Nat and Christopher visited their brother for what they feared would be the last time.
But Brennan persevered. He slowly recovered and left the ICU, only to develop aplastic anemia, a condition in which the bone marrow does not produce a sufficient amount of cells to replenish the blood cells. The graft from the third transplant was lost. Brennan began receiving two platelet transfusions daily and complete blood transfusions every two or three days, which put him at a high risk for infection.
“We knew that without another transplant, he probably didn’t have much time,” Tara says. “We had to move forward with another transplant right away.”
Leung consulted with Turner and Tara about the risks and complications associated with a potential fourth transplant. This one would be different—it would recover the bone marrow rather than attack the leukemia.
In January 2011, Brennan underwent an extremely rare fourth bone marrow transplant, with his mom serving as the stem cell donor. Less than a week after that procedure, Brennan developed fever, nausea and a build-up of fluid in his lungs. He returned to the ICU. Before being intubated, Brennan gasped for air and uttered, “This is the hardest day of my life.”
Although Brennan underwent multiple organ failure and swelling throughout his body, he slowly improved and returned to the hospital’s Bone Marrow Transplant unit.
Brennan’s condition continued to improve, and he achieved remission in May.
Not long afterward, pro golfer Loren Roberts visited St. Jude and presented Brennan with a flag from the Senior British Open golf tournament. The seasoned veteran was amazed at the boy’s tenacity.
“Brennan told us that when he was in ICU, he felt that his light was going out, but that he had to somehow focus through it,” Turner recalls. “When Roberts heard that, he said, ‘Anybody who can say that can do anything.’”
Brennan was cleared to return home by doctors in June, but not before serving as an honorary caddy during the FedEx St. Jude Classic golf tournament in Memphis. He even wowed spectators and golf professionals with a few swings at the tournament, which benefits the hospital.
Before tournament champion Harrison Frazar walked the victory trail to the clubhouse, he joined several patients. Brennan smiled as he sat on Frazar’s knee for a photo—a true image of persistence. It was Harrison’s first win in 355 tries.
Just days after that snapshot, Brennan returned home. With a grin on his face, he entered the house that has been scarcely occupied the last 2½ years.
“This is like a dream come true,” he said.
Brennan now returns to St. Jude for monthly check-ups. He looks forward to returning to the golf course, but for now, he is enjoying his time with his family and his dog, Lucky. Brennan’s parents attribute St. Jude and positive thoughts to keeping their hopes strong through transplants and relapses.
“St. Jude has been a tremendous gift to our family,” Tara says. “It has allowed us to live as a family, and now, when we come back to St. Jude, it’s like a homecoming, a second home.”
Promise magazine, Autumn 2011