IN THE NEWS: Seth Family, Country School Turn Strife into Action

Kristen Sveda, New Canaan Advertiser
On June 7, from 9 a.m. to 3 p.m., Delete Blood Cancer is holding a bone marrow drive at Woodway Country Club in Darien to find potential donors for Kendra Seth and others like her fighting blood cancer. (New Canaan Advertiser, June 4, 2015)
Seth was more than the picture of health when she started having unusual pains in the right side of her abdomen in February 2014. “I thought I pulled a muscle in spin class,” said Seth in an interview with the Advertiser. It got worse instead of better and one Friday morning she decided it was time to see a doctor. Turns out she had a massive blood clot in her portal vein, the body’s largest vein leading to the liver. “It was an emergency situation,” said Seth. In March 2014, she was diagnosed with MPN (myeloproliferative neoplasms), a type of blood cancer, which causes an overproduction of blood cells in the bone marrow due to genetic mutations in the stem cells.

“It’s not a bad blood cancer,” said Seth, noting that it was a manageable condition. “It’s like diabetes.” But one of the side effects is clotting. Five weeks later, in March 2014, she left the hospital 20 pounds lighter. Then, in July 2014, she had a major setback. “I was coming home from the Cape and wasn’t feeling well,” she said. “It was sort of like the flu.”
She called to cancel dinner with her sisters that night and went to bed. She woke up in the middle of the night vomiting blood and was rushed to the hospital and diagnosed with esophageal varices. “I was on so many medications in the hospital and I still had this clot. There was too much blood flowing and nowhere for it to go. “After that I was like, I’ve got to get my life in order.”

The right diagnosis
She began to do some research. Her mom, Barbara Freehill, was diagnosed with MDS (myelodysplastic syndromes) four years before. MDS is a group of bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. It is also considered a blood cancer. But her mother’s diagnosis seemed manageable. MDS is more commonly diagnosed in adults 65 and older but can occur at a younger age. Seth kept going for blood transfusions and her blood count kept dropping. “This was my new normal,” Seth said. Then in February 2015, doctors diagnosed her with MPN/MDS overlap, an unusual condition that happens in some patients. “The MDS part is the more significant and more serious cancer,” said Seth. “It can’t be managed as well.”

Finding a match this weekend
While Seth was hopeful her sister was a match, it turned out she tested positive for a gene mutation that Seth has as well. “It was too dangerous for her to be my donor,” she said. MDS is not considered a genetic disorder but Seth’s doctor, Dr. Azra Raza at Columbia Presbyterian, believes it is and is researching the links to prove it. Now, Seth is putting her hopes in the generosity of others in the community who come out to get swabbed this Sunday at the Delete Blood Cancer bone marrow drive.
Potential donors will get a quick swab of the mouth (a 10 minute process). According to deletebloodcancer.org, there are two donation methods. In 75% of cases, it’s a peripheral blood stem cell donation, a nonsurgical blood draw that takes four to eight hours on one to two consecutive days. Blood is drawn from one arm, needed cells are removed, then the blood is put back in the other arm. In 25 percent of cases — typically when the patient is a child — it’s a bone marrow donation, a one to two hour surgical procedure performed under anesthesia. Marrow cells are collected from the back of your pelvic bone using a syringe. Donors must be 18 to 55 years old.

For more information, visit deletebloodcancer.org. To volunteer, emailkellyfreehill25@gmail.com.

New Canaan Country School Cares

This won’t be the first time Seth has seen an outpouring of support from her community. She has already found a wealth of it through her children’s school. Three of her four children currently attend New Canaan Country School. Since her initial hospitalization, she said faculty and students there have come together in support. “It was amazing,” said Seth. “They were so ready to support the kids in every way.”
None more than Kristen Ball, fifth grade homeroom teacher for three out of her four children and math teacher for the fourth. This year, Ball had Seth’s youngest, Dylan, in her class, homeroom 5B, which has a reputation for her 5B Cares project.

Ball has each student choose an organization that is helping a cause around the world, research it and create a symbol for the organization and why he or she chose it. At the end of the year, students make a poster, give a short presentation and run a lap around the track in a 5B Cares Run. Then, students write a letter to the organization telling them what they did in class and why they chose that organization.

Talking, not collecting money

Ball started the project eight years ago when she shared her experience in rural Kenya with her class and a boy raised his hand and talked about a friend who had leukemia. “They all had their stories to share that brought our classroom community together,” said Ball. She said instead of talking about drugs or poverty or war or cancer, she wanted to focus on organizations that are helping eliminate these things. “We want to build awareness of what’s important to us,” said Ball. “It’s about empowering the students. Not having a bake sale or writing a check or collecting money. It’s about having conversations and making the world better.”

No money is raised. Just awareness. For some students, it’s a chance to better understand challenges they face in their own lives and the project becomes very personal. Dylan Seth, 11, was one of those students this year. She chose MDS for her 5B Cares project. The symbol she created was of her mom and grandmother and her standing under a tree made of cancer ribbons. “I wanted to represent how much I love my mom and grandmother,” Dylan told the Advertiser. “I wanted to represent them and show we are protecting them.”

“She worked so hard on it,” Ball said. “She spent hours working on these cancer ribbon leaves.”

For many of her students, Ball said, the project makes them feel like they are doing something to help.

“I feel a lot more informed,” said Dylan.  “At home, it was all I could think about every day. I’d ask my dad how she was doing and he’d say, ‘well,’ and we all knew she was not well,” she added. “At school, I had great friends and my best friend Elizabeth was always so supportive. Going to school made me feel much better with all the care I was getting.”

Positive thinking, positive results
“I think it’s important to focus on the positive — to have discussions about important world issues,” said Ball of the work her students like Dylan are doing in class. “It’s important to focus on progress and what can be done, to focus on each other and respect each other, to focus on what’s important to each other.”

“I thought of my mom a lot anyway,” said Dylan of this past year. She said the 5B Cares project “helped me find a way to appreciate what my mom does and how much I love her and really care about what she’s going through.”

While she isn’t a fan of the attention her family has gotten as a result, Dylan said she knows sharing their story and getting the word out about the bone marrow drive this Sunday is important. “Sometimes I get a little bit like, ‘Hum, I don’t know if I want everybody to know about this,’” said Dylan. “But for my mom, this is helping her.”
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