Alex and Caulen Tharpe go head to head in one of their favorite video games. A favorite pastime of many siblings, the Tharpe brothers especially enjoy taking part in everyday family activities since Caulen began his fight against cancer this year. Caulen is only the fourth child in the United States to be diagnosed with anaplastic large cell lymphoma. Caulen's cancer is even more rare because it has primarily affected his bones.
When 7-year-old Caulen Tharpe began running a fever in February of this year, his parents, Brent and Charity Tharpe, did everything in their power to find the cause of what was making their youngest son sick. Caulen's pediatrician sent him on to Le Bonheur. But after two weeks of fighting a high fever and inflammation throughout his body, the Tharpe family still had no answers."On February 10, he started running a fever," said Charity Tharpe. "That's what got everything started. The fever kept coming and going and the inflammation stayed. It wouldn't go away."
Caulen was released from Le Bonheur with the diagnosis "fever of unknown origin" and ordered to follow up with an infectious disease physician one month later.
"(At the follow-up), we received the same diagnosis," said Charity Tharpe. "They thought perhaps it was a virus."
"We questioned then whether this could be a cancer of some type," said Brent Tharpe. "Some sort of leukemia, but they said it would have shown up in his blood."
"Nothing came back in the blood work," said Charity Tharpe.
At the end of March, Caulen began complaining of trouble with his back.
"We waited two weeks, thinking maybe he had done something to it at school," said Charity Tharpe. "But he went to an Easter egg hunt and when his basket was half full, he couldn't carry it anymore."
X-rays revealed a 12 percent curvature in Caulen's spine. The inflammation was still there and doctors suspected scoliosis or a serious infection in the young boy's back. The Tharpes requested to be sent to Vanderbilt Children's Hospital and arrived on April 18.
"They did another X-ray and saw the curvature of his back," said Charity Tharpe. "The doctor there didn't like what he saw. Caulen was ordered to have a sedated MRI -- a three-hour test -- and he got it that day. The MRI showed multiple bone lesions. It looked like someone took a pin and started poking holes in his spine."
Charity said several of the lesions had connected, causing the spine to fracture.
"There were vertebrae sitting on top of each other due to the compression from the inflammation," said Charity Tharpe. "He was taken out of school because they did not want him taking the stairs and Newbern Elementary was in the middle of its renovation. He spent three days in the hospital to start IV antibiotics and we were sent home with more antibiotics."
During the month of May, Caulen's condition deteriorated even more. He suffered from sciatic flare-ups and by the time he returned to Vanderbilt, he had to be moved in a wheelchair. The Tharpes did all they could to help their son combat his pain, but strong pain medicine -- and even a nerve block -- proved to be very temporary solutions.
"(When we returned to Vanderbilt) his second MRI was worse than the first," said Charity Tharpe. "They thought he had a bone infection called osteomyelitis. But the antibiotics should have helped with that. A back surgery was scheduled to ease Caulen's pain. His physicians washed the infection from around the S1 and S2 root nerves in his back and the young boy's pain was finally relieved. The orthopaedic surgeon also informed the Tharpes that Caulen had a hole in his sacrum, the large triangular bone at the base of the spine."
An unexpected diagnosis
Time at home is a blessing for the Tharpe family. Brent and Charity Tharpe appreciate the efforts of Vanderbilt Hospital to offer programs and partnerships that keep Caulen as close to home as possible during his treatments for anaplastic large cell lymphoma. The family is also very thankful for community support -- from friends, co-workers and the Community Cancer Fund.
"We stayed in the hospital for two weeks, getting a full diagnostic workup," said Charity Tharpe. "Hemotology was called in to check his blood, and a bone scan was ordered. They wanted to do a bone scan before they started a six-month steroid treatment that would have wiped out his immune system. The bone scan showed the damage that Caulen already had in the thoracic and lumbar areas of his spine, a new spot in the cervical area of his spine, and a new spot on his skull in the area in the middle of his forehead. Caulen underwent a CT of his head and more blood work. The CT revealed the hole in the skull in the middle of Caulen's forehead was not contained to his sinuses. It went through to his brain. The bone scan revealed a place in the bone on Caulen's forehead that, finally, pointed his physicians in the right direction."Hemology wanted the spot on his skull biopsied before they would sign off on any paperwork," said Charity Tharpe. "They thought they had seen characteristics of (Langerhans Cell Histiocytosis) in his blood and that the biopsy would confirm their suspicions. This would be Caulen's third biopsy."
The bone scan did provide the Tharpe family with a diagnosis, but it wasn't the one Caulen's physicians expected. "That is when they found the lymphoma," said Charity Tharpe.
Caulen's tests were supposed to confirm LCH, a rare disease related to leukemia or lymphoma with manifestations ranging from isolated bone lesions to multisystem disease. Instead, physicians informed the Tharpes that Caulen had anaplastic large cell lymphoma. A disease usually prominent in the skin, Caulen's ALCL was primarily affecting his bones.
"We went back to Vanderbilt on his 8th birthday, on June 19, and received the diagnosis," said Charity Tharpe. "The skull is just where the cancer had metastasized. A PET scan was scheduled to find the cancer's point of origin. It originated in the lymph nodes of his stomach, the mesentary, and the lymph nodes of his neck. So all of the locations they found cancer include the skull, total vertebrae, the stomach, the mesentary and the neck.
"He is only the fourth child in the U.S. diagnosed with ALCL with primary bone involvement," said Brent Tharpe. "They have no idea what causes it because it is so rare."
The Tharpes requested a second opinion and the diagnosis was confirmed by the National Institute of Health in Maryland.
Finding evidence of Caulen's cancer cells was also a challenge.
Caulen's blood work still showed no signs of cancer. But now that the team of physicians knew where to look, the evasive cancer cells were finally detected. Tissue samples collected from Caulen's earlier tests were also retested and the cancer cells were found.
"You have to look inside the cell, into a certain part of the cell to find the cancer," said Brent Tharpe. "It camouflages itself. St. Jude, LeBonheur and Vanderbilt -- they all missed it. His blood still doesn't show cancer (in the traditional way). There were five different teams of doctors working with him to find out what was wrong."
"Hematology saw that something was not quite right," said Charity Tharpe. "They were the ones that got the ball rolling, they wouldn't sign off on (the treatment for the bone infection) without the bone scan."
"His doctors had to reach out to a network of over 200 of the best cancer doctors in the country," said Brent Tharpe. "For his chemo, they are using two different sets of medicines because it is in the bone. It is very complicated."
Treatment gives hope
"As of Aug. 29, after three of his six treatments, Caulen' PET scan showed all cancer had cleared except for his pelvis area," said Charity Tharpe. "His scan to tell us he is clear won't be until some time around the first of November, which will be three weeks after his last treatment. This is to allow the chemo to do its final work."
This week, Caulen will return to Vanderbilt for his last chemotherapy treatment. He and his mother will stay six days, with Caulen receiving his last chemo series over a five-day period. Caulen's big brother, Alex, will stay home with his father.
The Tharpes are thankful for the many strategies Vanderbilt has initiated that allow them to stay as home as much as possible. A Care-All nurse collects Caulen's blood work twice a week and Vanderbilt partners with Jackson-Madison County General Hospital so that in the case of an emergency or a concern, the Tharpes may only have to travel as far as Jackson.
Caulen is currently keeping up with his studies at home and the family credits the Dyer County School System and the faculty and staff at Newbern Elementary School for their efforts to keep the third-grader on track with his studies. Caulen's classmates began changing classes this academic year and Charity Tharpe said Caulen's teacher, Lauren Hinz, has done a wonderful job coordinating the assignments from all his teachers with his homeschool teacher.
The family receives school emails for special occasions, inviting Caulen to participate in NES celebrations and social events, as well.
"He puts on his mask and goes when they have special events," said Charity Tharpe. "In spite of (his health problems) he is doing his school work. He got to be a part of the Terrific Kids program and the Gold Club."
Caulen and his parents hope he will be able to return to school when the second semester begins in January.
Community support
The Tharpes have been moved by the support of the community and, especially, the efforts of the Community Cancer Fund. Brent Tharpe, a former officer and investigator with the Dyersburg Police Department, now owns a consulting company to teach others to investigate child abuse and sexual assault. He had to shut down his business for several months when Caulen was first ill. Charity Tharpe, personnel coordinator at Walmart, has received great support from her employer and fellow associates during her time back and forth from home to Nashville.
"People have been so good to us," said Brent Tharpe. "I was under the impression that the Community Cancer Fund and the American Cancer Society/Relay for Life were the same. We found out that is not the case. Relay for Life raises money to find a cure. That is very important. We are very much interested in that. The Community Cancer Fund helps local cancer patients. We have learned the importance of supporting this local organization, as well."
Charity Tharpe stresses the importance of being an advocate for your child's health.
"You know your child," said Charity. "You know what's out of the ordinary for them. You just keep taking them back. If Vanderbilt hadn't been diligent, it would have been next year before we would have found the cancer. The steroids would have suppressed his immune system and the cancer would have run rampant. Vanderbilt has been great to him. Finally, finally, we found the answer. It took a while, but they found it. (The only advice I have is) you know your child. Be persistent."
Family rises to the challenge
Charity Tharpe hopes to connect with the families of the three other children diagnosed with ALCL that is like Caulen's in the United States to find out more about the disease, what to look for and what to expect after Caulen completes his treatment.
For now, the Tharpes are treasuring their time together as a family. They have been reminded that simple moments -- like watching Caulen and Alex play a video game together -- are miracles to be cherished. They are also proud of the way both their sons have risen to the challenges in front of them.
"Big Brother Alex has been wonderful," said Charity Tharpe. "And Caulen's doctors are so impressed with the way he has handled his treatment. He is doing really well."
Those who wish to aid the Tharpe family during this time may make donations to a benefit account for Caulen Tharpe at First South Bank.
Source: http://www.stategazette.com/story/1906379.html
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