Chris Kopet has endured more than his fair share of trauma and experienced more than his share of miracles since his battle with Hodgkin’s disease began in 1978 when he was barely 20. Then in November 2004, Kopet was diagnosed with Philadelphia Syndrome (Rapid Onset Adult leukemia), a type usually found only in children under the age of 10. In fact, only 30 percent of adults have been reported with this diagnosis.
The devastation began with simple flu-like symptoms that lasted longer than expected, tipping Kopet off that something wasn’t quite normal. A physical completed by Dr. Rodney Snead of CARES in Anniston confirmed Kopet’s worst fears and led to more tests and nightmares to be endured by his family in the months ahead.
Thirteen-year-old son Raymond gave Kopet the greatest gift ever given to a father by a son — life. During a time of treatment filled with chemotherapy and chemo-pills, a part of Kopet’s daily routine, many avenues of hope to finding a match for Kopet led to nothing but dead ends before discovering his own son — once thought too young to be a donor — was now his chance for survival.
It was nothing short of a miracle—the miracle of timing that led to the discovery their son Raymond had just turned of age to donate the bone marrow that would keep their family a unit.
On the 83rd day after Kopet’s transplant, it was good news when the nurses announced he had seen the last of the six-hour I.V. that he was having to endure because of a virus he contracted after a transplant he received that saved his life. The full transplant is only one of three successful transplants from a child to a parent. Before the transplant, it had taken eight days to wipe out all of Kopet’s own white cells that would prepare him to accept his son’s bone marrow, via both radiation and chemotherapy.
One of the most recent of the miracles for the Kopet family happened when wife Donna left her husband at an outpatient facility, Caring House, near Duke University Hospital to spend Christmas with their children at home in Jacksonville.
Upon her arrival home, she was overwhelmed by the generosity of neighbors and friends, particularly Ginny Hinds and Donna Gibson who took upon themselves to decorate the home for Christmas. The two women not only put up and trimmed a tree for the Kopets but also brought a honey-baked ham and added homemade side dishes. Even gifts were supplied because they knew Donna would not have an opportunity to shop.
On Christmas, Kopet, whose gifts on Christmas would include bags of platelets and blood, entered a journal entry onto his section of the caringbridge.org Web site: “I would like to take this opportunity to wish everyone a happy and healthy holiday. The outpouring of generosity to my family has been overwhelming…I cannot imagine another community of people that has supported anyone such as mine has. All I can say is thank you and I will do my best to beat this. It was difficult to not pursue some method of coming home. In reality it would not have been in the best interest of pushing this treatment forward to do that. It is of great comfort to know that my family can have a Christmas with so many people that care so much. God bless all of you.”
But the Kopet family would not be kept apart completely on Christmas. They shared the miracle of Christmas by cell phone and Donna videotaped the experience to share with Chris when she returned two days later. Though it was the first time they had not physically been together as a family during a holiday in their 18 years of marriage, the Kopets managed to connect spiritually on that day. They were later able to convert the memories to DVD.
“He’s still Chris, that’s what I love; I’m flying back to him tomorrow,” said loving wife Donna, who has stuck by his side and been his strength from the very beginning of the entire ordeal. Donna will send her boys off to stay with relatives in Connecticut while she remains with Chris until his return flight home.
During the Kopets’ stay, nurses got together with Duke University’s head basketball coach, Mike Krzyewski, who coaches the now the No. 1 college team in the U.S. As a result, he and his players signed basketballs then presented them to sons Raymond and Christopher.
The boys got the chance of another unforgettable memory: shooting free throws at a Duke University game. The boys were two of 14 chosen for the free throws. To add to their collectible basketballs, they were also given banner-type signed photos of the girls’ basketball team from their head coach, Gail Goestenkors.
Chris Kopet also received another gift about three weeks ago. Rick Hendrick, owner of Jeff Gordon’s NASCAR team and also a leukemia survivor, called Chris to encourage him and give support.
Every little bit of encouragement aids the healing process and Chris never gives up. When the 28-day waiting time after the transplant turned into 53, he had a setback with his liver. He experienced GVHD (Graft Versus Host Disease) virus that would have him waiting to come home after 100 days of treatment of the virus that can prevent progress, affecting skin, organs, and the liver.
As a result, patients often end up having to be a pin cushion for a daily chemical work up that keeps a watch on various health count numbers daily. Normal numbers range anywhere from a .5 to 1.5 in range. Kopet’s had gone to eight, putting him in a jaundice situation. GVHD is usually first noticed in the mouth. Side effects also include dry skin, rashes, and diarrhea. Two areas are generally affected: the gut or intestines and the liver.
During that time, he became an infant again in the sense that he could eat nothing but ice chips and had to work his way into adding liquids and small particles of bland foods. Dairy products would be the last to add due to the length of time it takes to process the product. Some never regain the ability to add dairy products to their daily routine again. But, Kopet’s faith and strength prevailed when he celebrated by eating steak for the first time in months just last week.
Now, the infection in his colon and digestive tract, typical for a host disease to attack these organs after transplant, has resided.
As the Kopet family continues to battle the challenges of post bone marrow transplant, they anxiously count down to the 100th day when Chris can come home, but the mid-January event seems slow to come.
“I’m feeling pretty good. I’m just about 81 days out and getting closer to day 100,” said Chris on Monday as he again expressed his love for the Jacksonville community that has carried him through this traumatic event and kept his spirits lifted.
After Kopet returns home, he will be prescribed a “move-on” program that will include IVs and pills being transferred to UAB (University of Alabama) hospital where he will continue his maintenance and treatment plan that will keep him chemically balanced as he continues to adjust to his new immune system.
Kopet, however, can’t claim remission until a one- or two-year period has passed when a bone marrow check clears him of the disease. But Kopet currently has 20 percent of his son’s cells reviving him year-to-date.
Kopet makes daily online posts of his condition on www.caringbridge.com. Earlier posts of his condition and experiences can also be found there. Encouragement can be sent by e-mail to Kopet31@cableone.net.
