|Ty Camblin faces partial removal of rare tumor|
|Written by Brenda Johnson Brandt|
When HHS freshman Ty Camblin failed a BOCES hearing screening at school last fall, he and his family had no idea it would lead to the diagnosis of a rare diffused neurofibroma tumor.
Through CT scans, MRIs and doctor visits at Children’s Hospital in Denver and Mayo Clinic in Rochester, Minn., Camblin is electing for surgery to remove a portion of the tumor that is pressing his left ear canal shut.
He and his parents, Kris and Marla Camblin, made the trip to the Mayo Clinic last week for an April 16 appointment. The second opinion matched the diagnosis from Children’s, and Camblin is tentatively looking at a May 20 surgery date in Denver.
With optimism to be admired, Camblin just looks forward to hearing again. With an anticipated three-to-five-day hospital stay after surgery, the teenager has his eye on his driver’s license and his 16th birthday on May 27.
While no contact sports will be allowed for six to eight weeks, Camblin will still be able to focus on his steers this summer as he works on his 4-H and FFA projects.
Their faith, along with community/friend/family support, has made the diagnostic journey easier for the Camblins. “God shows his path for Tyler, and we’ll walk it with him,” said Marla.
Instructed to keep his life as normal as possible as he awaits surgery in May to remove part of a diffused neurofibroma tumor near his ear, HHS freshman Tyler Camblin is pictured with his family and his FFA State Fair steer, Ace. The Camblins are pictured from left, Kaylee, Kris, Marla and Ty. The family has received extensive and much-appreciated support from their cattle show circle, as well as the local community.
Fundraiser planned Friday
The Camblins’ church family at Zion Lutheran is coordinating a freewill donation brat feed Friday, April 25 from 5-7:30 p.m. in the Biesemeier Room at the Phillips County Event Center.
Up-front funds for the feed were applied for and granted through Thrivent Financial.
An account to assist the Camblins in defraying medical costs has also been set up at First Pioneer National Bank in Holyoke.
Ty’s aunt, Monica Becker, has coordinated a silicone bracelet campaign for community members to show their support. The lime green bands, in Tyler’s favorite color, say, “Prayers for Tyler.”
Becker’s initial order was so popular that she’s placed another and will have them available for sale soon.
Tumor is rare
Camblin’s tumor has been called a 1 in 50,000 or 1 in 80,000. “That’s how rare it is,” said his mom.
After failing his hearing screening through the school twice last fall, Camblin visited the local doctor, who thought he might have an outer ear infection. An antibiotic was prescribed, as well as steroids to reduce the size of his swollen tragus, the small flap covering the entrance to the ear canal.
On down the road to diagnosis, a CT scan was ordered through Dr. Jeff Chain, an ear, nose and throat specialist who comes to Holyoke for specialty clinics.
For a more immediate visit, the Camblins saw Chain at his office in Denver, where another CT scan was ordered. Marla said the doctor knew something was there but couldn’t see it clearly. “Something in his gut said not to walk away,” and he ordered an MRI.
That’s when they found the mass, right before Thanksgiving. Chain transferred them to a personal friend, Dr. Melissa Scholes, a pediatric ENT at Children’s Hospital.
A Dec. 3 biopsy showed what they later confirmed to be a diffused neurofibroma tumor. Diffused means that it has no borders, explained Kris. “It’s like a bag of worms, so it makes it difficult to remove.”
Marla added that it is a nerve tumor and is laying on Tyler’s nerves. It runs along his left ear and follows his skull to the middle of the back of his head. Coming forward, it presses on his TM joint, where his jaw hinges.
The disease that produces this tumor is usually neurofibromatosis, but Tyler has none of the symptoms for the disease. A geneticist believes he might have a mosaic form of neurofibromatosis, but there are differing opinions on that.
Genetics will be tested again in a year to keep watch on it.
At Children’s Hospital, it was recommended that a portion of the tumor be removed. There’s concern that some of the tumor runs along the facial nerves, and there’s a potential for facial paralysis.
A second opinion at Mayo Clinic last week found the results to be much the same. Doctors are also consulting and getting opinions from Johns Hopkins in Baltimore, Md.
Kris and Marla said they feel strongly that something should be done but left the surgery option up to Ty. He wants to move forward in order to get his hearing back.
Debulking the tumor is what it’s called, and Tyler is ready.
The surgery will be done by Scholes at Children’s in Denver, possibly with the assistance of a plastic surgeon, Dr. Brooke French.
Marla said Ty hasn’t missed a beat in this hurry-up-and-wait diagnostic process. He wore an ear guard during basketball for a while after his Dec. 3 biopsy but was able to stay active in the sport and continue with his FFA, FBLA and 4-H activities, as well as school.
The Camblins praised his teachers and coaches for working with him. And his sister Kaylee, a seventh-grader, has been a good, strong sister, added Marla.
From thinking there was a slight chance that there could be a mass to getting the call that confirmed Ty did have a mass was drastic. Kris said, “It’s something you never think will happen to you, but it does.”
The Camblins have adjusted to the fact that this is something that Tyler will deal with for some time, if not for the rest of his life.
He will receive regular MRIs every three to six months for the next several years to monitor the tumor. It is benign, but if it were to malignify over time, that would be caught in the monitoring process.
Kris pointed out that the part of Ty’s tumor that is removed will go into research. Dr. Nicholas Foreman, head of neuro-oncology, who has a research center at Children’s Hospital, is excited to study this as it falls in his realm of study.
Kris added that they feel they’re on the cutting edge for medications to help with this type of tumor. If Foreman finds anything in his research to help, the Camblins were assured he would be in touch.
Radiation is not suggested because Ty’s is such a slow-growing tumor. The Camblins also noted that this type of tumor doesn’t react to chemotherapy at all, so that’s not an option they’re looking at.
“We’ve had our ups and downs,” Kris admitted as they described their journey in digesting Ty’s diagnosis.
They’ve been proud of Ty, who made the comment as they were at Children’s Hospital that he didn’t know why the fuss was all about him when he saw kids who were so much worse.
Texts, Facebook messages, cards of encouragement and phone calls of support have helped the Camblins through. “We’re fortunate to live here,” said Marla, adding that their faith, along with the community, has helped them all.
Holyoke Enterprise April 24, 2014