Family thankful for treatment options
By: GEOFFREY STOUTE
Most enter into a church pew and sit down before services without hesitation.
Kasi and Chad Treser and their family wipe down their pew, first.
Most shake hands during the portion of the church service when the congregation offers each other a sign of “Peace.”
The Tresers do the same, wiping their hands with Germ-X.
Most welcome people into their homes, but beforehand, they merely expect them to wipe their feet on the doormat if their shoes are full of mud or other substances.
The Tresers’ visitors are welcome too — if they have no illness. However, before they relax, they must take their shoes off in the “anti-room” in the home’s foyer. Then, they are sprayed with disinfectant, while any of their outer wear or other items are wiped down, too, and left in the foyer.
Next, they must wash their hands up to their elbows for a few minutes with antibacterial soap.
Then, finally, the visit can begin.
Most people would call the Tresers’ actions a germ-phobia.
The Tresers call it life … or, for the littlest member of their family, survival.
For the family, this new way of life began nearly six months ago on June 2, when Kasi, a New Orleans resident and former Morgan Citian, gave birth to a son, Kohen. Shortly after birth, Kohen was diagnosed with Wiskott-Aldrich Syndrome, a rare genetic blood disease that causes him to bleed easily without much clotting and leaves him susceptible to any infection or virus because his body cannot respond normally to anything he catches.
The syndrome also leaves him at an above average risk to leukemia and a brain hemorrhage.
Female family members carry the disease but male family members can be born with it.
According to the National Institutes of Health, the disease affects between 1 and 10 of every million people.
Kasi’s mother, Debbie Bennett — who lives with her husband Craig in Morgan City — has had much more contact with the disease than those statistics suggest — three of her brothers as well as a nephew and a great-nephew all succumbed to the disease.
Her two oldest step-brothers, Larry and Jerry Zaunbrecker, passed away from the disease before she was born, although doctors had no name or no sound treatment for the disease at the time of their death.
Eighteen years after her second son died of the unknown disease, Debbie’s mother gave birth to another son, Walter “Walt” Bowling, who lived two years and two months with the disease — much of that in a New Orleans hospital — before he succumbed to it.
By this time, two doctors — Alfred Wiskott and Robert Aldrich — were researching the disease and both treated Walt, Debbie says.
Around the time of Walt’s bout, she says the two researchers began to put the pieces together.
According to the Wiskott-Aldrich Syndrome Foundation, by the 1960s, patients with characteristics such as members of Debbie’s family, were diagnosed with what now is known as Wiskott-Aldrich Syndrome.
While Debbie’s mother carried the disease, not all of her male children received it as both her sons Richard Zaunbrecker and Johnny Bolin escaped the deadly illness.
“Women carry it, and if we carry it, then it’s 50-50 when you have a male child (if) they get it,” Debbie explains.
Despite some reprieve for Debbie’s generation, the syndrome continued its wrath on the family, impacting the next two generations as Debbie’s sister, Carolyn Netterville — formerly of Morgan City and now a Pride resident — was a carrier of the disease and subsequently gave birth to a son, Kirk Netterville, who died of the disease at age 9.
By the time he was diagnosed with Wiskott Aldrich, doctors were using bone marrow transplants in response to the disease, but patients had to receive a perfect match for success.
“His sisters didn’t match,” Debbie says of her brother, who still outlived the lifespan expectancy (between 2 years old and 8 years old) for Wiskott-Aldrich patients who do not receive a successful bone marrow transplant.
Of those that are born with the disease, though, many usually don’t live past age 2, Debbie says.
Carolyn’s grandson, Drake Robinson, was one of those, although he was born with other health problems and did not survive the chemotherapy that is given to Wiskott-Aldrich patients prior to the transplant to kill any of the patient’s existing marrow before they receive new marrow.
Drake’s brother, Grant, also was born with Wiskott-Aldrich, but he did survive after he was cured following a successful bone marrow transplant at Cincinnati Children’s Hospital in Ohio. The transplant was performed by Dr. Alexandra Filipovich.
Grant, now 18, recently graduated high school.
As for Kohen, Kasi knew she was a carrier of the disease, and while Debbie says her daughter prepared herself mentally for a possible diagnosis of her first two sons — McClendon, 5, and Aidan, 3 — both escaped the illness at birth.
Unfortunately, Kohen didn’t.
“It really hit her hard because … she had the other two and they didn’t have it, and when she had him, she just knew he wasn’t going to have it either,” Debbie says of Kasi.
When Kohen was born, his platelet count was between 15,000 and 20,000. It was supposed to be at 300,000. His count began dropping to almost 5,000, too, and he was given a platelet transfusion just a day after he was born.
Debbie says if her grandson didn’t receive a transfusion, the platelet count would continue to fall and Kohen would hemorrhage.
“That’s what kills them,” Debbie says. “They all have the brain hemorrhage” if they are not cured.
Anytime Kohen’s platelet count drops below 10,000, he is at risk for internal bleeding and a brain hemorrhage.
“His baseline (platelet count) has been 10 (thousand) to 12 thousand most of his life,” Kasi says. “Quite a few times he’s been below it.”
Despite the challenge placed in the Treser family’s lap, they quickly received good news when they learned just three weeks after Kohen's birth that Aidan and McClendon were 100 percent bone marrow matches and could possibly help save their brother.
Through further testing, they learned that McClendon was even more of a match, or what is referred to as a “supermatch.”
Unless further testing as the surgery approaches proves otherwise, McClendon is scheduled to give his brother potentially live saving marrow.
If Kohen rejects McClendon’s marrow, doctors can always try Aidan’s.
“That was half the battle right there,” Kasi says. “All this time we could be looking for a match. Some people, it takes a very long time (to find one). We haven’t taken for granted the fact that we were blessed with that right (from) the get-go.
“I always have in the back of my mind I want success for him, but it comforts me to know that if for some reason he rejects this marrow and it is a failed transplant, that we can try the other one. It gives me a little comfort because any parent in this position, you think about all the bad things that can happen.”
Doctors were impressed that even a match was found among Kohen’s siblings, especially because his parents are descendents of different nationalities — Kasi (German and Irish) and Chad (German and Filipino) — and it becomes complicated to find a DNA match when mixing the blood types of different nationalities.
“A matter of fact, the doctor commented on it again yesterday,” Kasi said Wednesday. “He cannot believe that we have two matches.”
The only reason Kasi could give her doctor for the match was simply all the prayers that have been said for Kohen since he was born.
“The day he was born, we had people praying, and his prayer chain has just grown,” Kasi says.
After he was diagnosed, Kasi decided she wanted to have Kohen’s transplant procedure done at Cincinnati Children’s Hospital, where 11 Wiskott-Aldrich transplants have been completed. The transplant will be completed by Filipovich, the same doctor that did his cousin, Grant’s.
“She’s world renowned,” Kasi says of Filipovich, the director of the Immune Deficiency and Histiocytosis Program at Cincinnati Children’s Hospital Medical Center as well as the medical director of the Diagnostic Immunology Laboratory at the hospital.
However, the family has had to wait six months before the transplant, which is expected to take place Dec. 22, could be complete. The holdup was because doctors don’t like to expose babies younger than six months old to chemotherapy because it can affect the brain, which is still growing.
In the meantime, the family has had to adapt to the tedious task of keeping their house as sterile as possible, so that Kohen is not exposed to antibodies, which could fight off the bone marrow during the transplant.
For the Treser family, that means wiping down various parts of the home such as surface areas, doorknobs, light and lamp switches, remote controls and cellphones.
“We do that throughout the day as much as we can,” Kasi says. “The way the doctor told us, if we keep our home his sterile environment, he should be OK.”
During this critical time, Debbie says if her grandson would contract an infection, he probably would not survive, and if he were to fall and bump his head, he could possibly hemorrhage before he arrives at a hospital.
“I know it sounds scary to other people, but I guess we grew up with it, so we know to protect him and take care of him and watch for all this stuff,” Debbie says.
Despite the challenges, Kohen is able to go out in public — although he wears a mask, is shielded with blankets in his stroller, etc.
Despite these monumental challenges, Chad and Kasi have tried to keep the family life as normal as possible, as the Treser children are involved in extracurricular activities.
“Chad and I just made a commitment to ourselves (and) to each other that we were not going to change the kids’ lives,” Kasi says. “We didn’t want to stop their lives because of Kohen. We didn’t want them … just being kids with their natural reactions, to grow resentful of their brother. We didn’t want them to be worried about their brother. It was important for us to move forward just as we’ve always had with the kids, (but) at the same time, protecting Kohen is our priority.”
However, on Saturday, the family will enter the first of a critical stage in Kohen’s quest to be cured, when they leave for Cincinnati, where he will undergo a battery of tests next week before he is admitted to the hospital on Dec. 2.
Upon admission, he will receive blood and platelet transfusions and a port, which will consist of a small incision in his chest, on Dec. 3.
He then will undergo more testing, and he will be giving small increments of drugs and his blood’s reaction to the medicines will be monitored closely for 48 hours.
“They’re able that way to decide on how to give him the most of the drug at the safest way, so they don’t give him too much chemo, but they want to give him enough to kill off all the bone marrow,” Kasi explains of the blood tests.
By Dec. 12, he is expected to begin a 10-day treatment of chemotherapy, and if all goes well, on Dec. 22, the transplant, which will consist of bone marrow being extracted from McClendon’s hip and inserted into Kohen’s chest via the port, will occur.
While McClendon is expected to recover quickly following the transplant, Kohen will enter what is called “the 100-day period.”
“After (the) transplant is really the scary part,” Kasi says. “It’s not like other transplants where once it’s done, it’s done.”
It will take the marrow as much as two months after the transplant to grasp and start growing and multiplying throughout the bones and making red blood cells, platelets and then white blood cells — in that order.
“During that time period while we’re just waiting to see whether it’s going to grasp or take, he’ll be getting daily transfusions of blood and platelets,” Kasi says.
Once the 100-day mark since the transplant, if Kohen has reached certain benchmarks in his progress, he may be discharged as an outpatient.
However, he will not be able to leave Cincinnati then. He will have to stay in a special isolation room for bone marrow patients at the Ronald McDonald House for another 30 to 45 days during which time he will return to the hospital for checkups, first daily and gradually less and less.
“Once you get to one day a week, you know you’re getting ready to go home,” Kasi says.
Once home, the family will have to keep their home just as clean as before, while Kohen will continue to alternate appointments between visits with his pediatric hematologist and oncologist at Ochsner Children’s Health Center in New Orleans, Dr. Craig Lotterman, as well as at Cincinnati Children’s Hospital, for the next two years.
“Because they have an immense amount of trust and confidence in Dr. Lotterman, and he has had handled cases with Wiskott-Aldrich before when he was at Johns Hopkins, they have told us they will allow me to alternate,” Kasi says.
If everything works out, Kohen could be declared cured of Wiskott-Aldrich two years following the surgery.
But before the family reaches that point, it — especially Kasi — will have to endure some challenging times.
When she leaves Saturday, Kasi will not return home for six to seven months — depending on how Kohen fares during the 100-day period following the transplant.
While close family will spend the critical time during the transplant with Kasi and Kohen, Chad and the children will spend much of the remaining time back in New Orleans, communicating with Kohen and Kasi via the online communication program Skype while making in-person visits about once a month.
While she knows her littlest one needs her, she says it will be tough to leave the others for such a long time.
“It’s probably the hardest part of the whole thing for me as a mother,” she says. “I don’t mean to slight my concerns for Kohen in the least. I’m going to be there for him. I’m never going to leave his side, but leaving behind my other kids is just really breaking my heart. I know they’ll be fine, and I know all the people taking care of them will love them and keep them laughing and distract them and entertain them, but … still, it’s probably just a selfish feeling that I’m feeling. It’s breaking my heart to leave them. That is going to be the hardest thing, saying good bye. I’m sure.”
But if it means the opportunity for her family to save their youngest sibling and son, she’s willing to do it.