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Still feeling the effects of the anesthesia...

Still feeling the effects of the anesthesia, the frail five-year-old boy tried to open his big brown eyes, then settled back to sleep. Above his head, the slow beep of a heart monitor buzzed in tune with each breath. A Bob the Builder band-aide covered his small hand, which peeked out from beneath the sheets.

"It always takes him a while to come out of it," Kathy said, rubbing C.J.'s back.

Her father, James Aurthur, known to C.J. as "Pop" smiled as he looked down on his grandson.

"You want to look at a miracle, take a look at him," Pop said.

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The trio has been at Children's National Medical Center in Washington, D.C. a hundred times before. This time it was for an MRI to determine whether the medications C.J.'s been on for the past several months had reduced the size of the seven tumors covering his brain.

The grim results came the next day. Doctors called the Sutphin's Culpeper home to say that all seven tumors had increased in size.

The team of doctors fighting to keep C.J. alive we're back to square one. But that's nothing new.

A rare disease

Charles Edward "C.J." Sutphin, Jr. was born on Sept. 4, 2002, with a hereditary disease called neurofibromatosis.

Recognized by a growth of tumors and skin discoloration, the genetic disorder was passed down to C.J. by his mother and grandfather. Both have neurofibromatosis type one, which causes tumors to grow and intertwine with nerves on the outer layer of the body. The tumors vary in size and may cause pain, but are usually benign.

"When I was coming along, they didn't know what it was," said Pop, who is 76. "But in the later years, we learned it was hereditary and there's a 50-50 chance of passing it along."

Pop and Kathy have dealt with this rare disease their entire lives and after the birth of Kathy's first three children, they we're happy to know that it hadn't passed down to the next generation.

But when C.J. was almost two, symptoms of the disease began to appear. Something was wrong with one of C.J.'s eyes.

"We thought he was going to have lazy eyes because my grandmother had it and one of my brothers did, too," Kathy said. "We knew something wasn't right."

Her suspicions led the family to take C.J. to see a neurologist, who ordered the first in a series of MRIs, which would eventually produce sad results.

A tumor behind C.J.'s right eye was causing it to stick out from his skull. The tumor was similar to the type his mother and grandfather have all over their skin, but was inside the body, wrapped around the nerves of his brain.

"The way they are wrapped around the nerve, there was no way to remove it," Kathy said. "If the tumors are inside, they are more dangerous, and that is very rare."

Since being diagnosed with type two neuro-fibromatosis, a total of seven tumors have been discovered on C.J.'s brain. The tumors are cancerous and have been treated with a combination of medications and weekly chemotherapy.

"I want C.J. to grow to be a healthy young man," Kathy said. "There is a chance that they can shrink the tumors, but they will never go away."

'Nothing I wouldn't do for him'

Dealing with C.J.'s condition has become a full-time job for the Sutphin family. Chemo treatments, doctor visits, trips to the pharmacy, and endless phone calls to the insurance provider have become the cycle of daily life.

Everyone questions how Kathy keeps up with C.J.'s needs. She tells them she wouldn't change her situation for the world. She just wants to see the best for her son.

"There are hard times when he is sick and everything, but he is very special," Kathy said. "He gets upset and I usually get the brunt of it, but there is nothing I wouldn't do for him."

Due to his condition, C.J. is faced with a number of developmental problems, such as trouble speaking, eating, and walking.

Although C.J. is able to walk, he normally gets around in a stroller or by holding someone's hand. He visits orthopedic specialists on a regular basis to improve his diminishing muscle mass, a result of toxic medications.

Type two patients of neuro-fibromatosis also suffer from deafness or speech problems, which makes it hard for C.J. to communicate his wants and needs. Frustration frequently fills his eyes and he whimpers to get the attention he needs.

"I tell people all the time, I'd trade places with him if I could," Pop said. "I see the pain that he goes through sometimes, but he can't really talk so he can't tell you where he's hurting. But you can tell by his reactions that he's hurting somewhere."

C.J. is fed through a port on his stomach, known as his "mickey button." It is used to inject nourishment and medications because he can't eat a large enough amount of food through his mouth.

While undergoing weekly chemotherapy treatments, a device known as a port-a-cath was surgically placed in C.J.'s chest just above his heart for easy access to the central circulatory system. Blood is drawn through the device because it is less likely to become infected.

"I can name all of C.J.'s hardware," Kathy said. "But sometimes it's hard to keep up with."

When C.J. was three, a pair of shunts, or plastic tubes, we're placed on each side of his brain to reduce pressure caused by excess fluid. The shunts allow movement of the fluid from the brain, down C.J.'s back, and into his stomach.

"C.J. has had so many surgeries, I've lost count," Kathy said. "At one point, we stayed a month in the hospital just because he contracted an infection. Children's Hospital has really become our second home, I'm sorry to say."

C.J.'s primary health care provider, Children's National Medical Center in D.C., is a two-and-a-half-hour trip from Culpeper. Having traveled there hundreds of times, C.J. has become a psuedo-celebrity. Everyone knows and loves C.J., Kathy, and Pop.

"No matter what department we go in, everyone knows us by name from the head of neurosurgery to the ladies working the desk," Kathy said. "It's really the best hospital."

Everyone pitches in

Seeing promise in C.J.'s reaction to a new treatment, doctors decided to take him off weekly chemotherapy treatments one month ago and prescribed two new drugs to treat the cancer. Rapamycin, which would cost the family $568 per month without insurance, and Tarceva, which costs $1,000 per week, we're thought to be the miracle cure.

"I was sweating when they prescribed them because I knew insurance wasn't going to cover them," Kathy said. "And we usually don't know if they will cover medication until we go to the the pharmacy to pick it up."

Luckily, all of C.J.'s doctor's visits and medicines are covered by FAMIS, or Family Access to Medical Insurance Security, which provides low-cost medical coverage for children of working families in Virginia. The family still pays a co-pay out of pocket and most doctor visits are marked by Kathy's battle with insurance claims, not knowing what will be covered and what won't.

"We fall into that category that we make too much to get Medicaid and we don't make enough to buy our own insurance," Kathy said. "There's lots of moms that fight like I do for health care and it gets expensive."

C.J.'s father, Charles, works two jobs in Warrenton to help pay medical expenses. Kathy runs a day care out of her house so she can care for C.J. around the clock.

"It's hard because Charles will go for 24 hours sometimes and then he comes home and sleeps for a few hours and goes back out again," Kathy said. "He really doesn't have a lot of time to spend with his son."

The family lost their car because they couldn't afford to make car payments. Luckily, one was donated so Charles could make it to and from work. Now, Grandpa Pop serves as C.J.'s taxi service, taking him to D.C. on a regular basis.

"Every trip that has been made to the hospital, I have made it," Pop said. "Regardless of where it is, I'll do it, just because he's my boy. I'm glad that I'm able to do it."

It's the support from C.J.'s large family that has made the most difference in his short life.

C.J.'s two step-brothers, Michael, 26, and Stephen, 19, and step-sister, Star, 13, look at their little brother as the angel keeping the family together. All six of them live in a townhouse overlooking Yowell Meadow Park.

"Ever since C.J. was born, Stephen especially has had a special bond with him," Kathy said. "But all the kids understand and they have sacrificed. They know that we can't take them out to dinner. We never do that anymore."

And C.J. knows he has each one of his siblings wrapped around his finger. All he has to do is give them what they call the "C.J. look" and they're his.

"He's happy, always smiling and gives everyone his C.J. look, which gets everybody," Kathy said. "He doesn't have a whole lot of energy, but he is full of spirit."

Looking into the future, Kathy refuses to know how long doctors expect C.J. to live with his disease. She'll continue doing what she's doing to keep her son alive as long as possible.

"You have to take one day at a time, one prayer at a time," she said. "As long as we have him, we will cherish him."

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Posted in Dentistry Post Date 12/17/2017


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