GET THE BAD GUYS OUT
Now in remission, Reed Elementary schooler Rhett Krawitt’s leukemia sparked the whole family into action
Editor’s note: This story was first published in the May 28, 2014, edition of THe Ark. It earned first place from both the National Newspaper Association and California Newspaper Publishers Association for Best Feature Story, as well as first place from the California Newspaper Publishers Association for Best Writing in 2014.
By EMILY LAVIN
elavin@thearknewspaper.com
Rhett Krawitt carefully spreads the large piece of red felt, shaped like a blood drop, over the coffee table in his family’s East Corte Madera home.
The 6-year-old places a variety of felt cutouts onto the blood drop. There are red pieces, signifying red blood cells, white pieces signifying white blood cells and orange pieces signifying platelets — the cells in your body that help stop bleeding, Rhett notes. He arranges them all while his dad, Carl, and his sister, 8-year-old Annesley, look on.
“Rhett, what did you have?” Carl asks.
“Blood cancer,” Rhett says.
“And what else is that called?” his dad prompts.
“Leukemia,” Rhett replies.
“And what is leukemia?” Carl continues.
“It’s cancer in my white blood cells,” Rhett answers.
He continues to hover over the felt blood drop, a tool used to help him visualize cancer’s effect on the body, picking up a gray scrap of felt — a cancer cell.
“These bad guys go on top,” he says, placing the gray felt on the white blood cell.
“This is chemo,” he continues, placing a bright yellow piece of felt, cut into the shape of a lightning bolt, atop the cancer cell, then removing both from the blood drop. “Chemo takes this guy away. We got to get the bad guys out.”
A mantra to live by
“Get the bad guys out” — five words Rhett has spoken nearly every day since he was diagnosed with acute lymphoblastic leukemia at age 2½. The phrase has served as his motto for the past 3½ years, invoked before each of the daily chemotherapy treatments he underwent to remove cancerous cells from his body; he completed his last treatment in February.
The phrase has also become his rallying cry, the first few lines of the speech the Reed Elementary School student delivered to audiences while serving as the Leukemia & Lymphoma Society’s Boy of the Year for the organization’s Greater Bay Area chapter in 2013 — an honor given to a local child who is a blood cancer survivor — and at various events since to encourage others to help fight cancer:
“My name is Rhett. Leukemia is cancer in my white blood cells. Cancer cells are the bad guys. I take chemo to get the bad guys out. Thank you for helping get all the bad guys out. For me, someday is today because I can say, ‘Gone with the cancer!’”
Rhett’s cancer diagnosis has sparked the Krawitt family to action. His illness has become a springboard to share their story while advocating for funding for cancer research and treatment and providing support to other families.
In early May, the family traveled to Washington, D.C., where Rhett was a featured speaker at the Leukemia & Lymphoma Society’s “Leading a Way to a World Without Blood Cancers” conference. The family also met with members of Congress to lobby for legislation to help improve cancer treatment and research, including affordable access to medication for cancer patients.
On May 29, closer to home, Annesley will participate in the society’s Superhero Charity Gala and Fashion Show at the Fairmont Hotel in San Francisco. She’ll walk the runway in a dress created especially for her by fashion designer Elena Slivnyak, a former contestant on “Project Runway,” to help raise money for cancer research.
The mission of their advocacy work resonates with the entire Krawitt family.
“Without those laws and funding and research, (Rhett) would have come home in a box. And at some point, they told us he was going to,” Carl says.
Suddenly sick
He can recount the days leading up to Oct. 29, 2010, a Friday, in detail. He remembers the bruises on Rhett’s body when Rhett came home from preschool earlier that week. Carl assumed Rhett was getting picked on at school and spoke to Rhett’s teacher. He recalls playing with Rhett in the park that Wednesday and noticing how pale Rhett looked. Carl just figured his son was tired. He notes having to pick Rhett up from school early on Thursday, because Rhett had a 102-degree fever. But several other kids were sent home from school sick that day, too. When Rhett complained that his feet hurt later that day, Carl found a small blister on the bottom of one of Rhett’s toes. Not unusual for an active kid, he thought.
“There are certain things that in hindsight were very obvious” signs of a serious problem, Carl says, “but we just didn’t know it at the time.”
When Rhett woke up that Thursday night, the blister on his foot had grown to the size of a fist, Carl says. He assumed Rhett had an infection, and headed to the emergency room with his son while wife Jodi stayed at home with Annesley.
Carl says they weren’t in the emergency room for more than two minutes when the attending doctor came into the room.
“He takes one look at Rhett, leans up against the back wall, looks at me and says, ‘Your son is very, very sick,’” Carl says.
The pair were rushed by ambulance to the University of California at San Francisco’s Benioff Children’s Hospital, where Rhett was diagnosed with acute lymphoblastic leukemia — blood cancer — about 2 a.m. Friday.
The cancer, the most common form of leukemia in children, develops when the body produces too many abnormal white blood cells. Instead of fighting infection and protecting against disease, these abnormal blood cells overtake healthy white blood cells, red blood cells and platelets, interfering with organ function.
Though Rhett had likely been displaying symptoms before that week, they kicked into overdrive when he stepped on a staple, causing a blister that became infected.
Lives turned upside-down
It’s not unusual for the time-frame from symptoms to diagnosis to be extremely fast with acute lymphoblastic leukemia, says Dr. Robert Goldsby, a pediatric cancer specialist at UCSF and one of several doctors who treated Rhett throughout his illness. That’s because the early warning signs of the disease — nosebleeds, fatigue, fevers and bruises — can be common in healthy kids.
Often, “the family came in because they thought the kid had a cold or the flu, and now they’re in the oncology unit dealing with a major crisis in their life,” Goldsby says.
“Our lives were turned upside-down that day,” Carl says, “and things have been different for us ever since.”
Rhett is an energetic 6-year-old with bright blue eyes and short blonde hair. He’s a kindergartner now and likes to play with Annesley — she recently taught him how to do a cartwheel — even though, he says, “she annoys me sometimes.” He likes learning about the presidents because “they help make the U.S. fair” and he hopes to one day ride on Air Force One — but only if President Barack Obama comes along, he adds.
“He’s bounced back so quickly,” Jodi says, watching Rhett literally bounce back and forth from one foot to the other in the family’s living room. “There was a time when he really couldn’t even walk (because of the chemotherapy), so it feels good to be on this end of things.”
It’s a feeling both parents weren’t sure they’d ever experience. After Rhett’s initial diagnosis, the outlook was good. Acute lymphoblastic leukemia generally has a survival rate of about 90 percent, and Rhett had responded well to his first dose of chemotherapy.
But within the first few days, he developed a serious infection.
At once, his high odds of survival were flipped, and doctors told the family to prepare for the worst.
“He was basically between a rock and a hard place,” Carl says. “He was too sick for chemo, but without the chemo, they couldn’t kill the cancer.”
What was supposed to be a two-week hospital stay for his first round of aggressive treatment turned into an 87-day stay as doctors walked what Goldsby called “a pretty fine tightrope” — treating life-threatening cancer without allowing life-threatening infection to grow.
In Rhett’s case, Goldsby says, that required modifying the sequence of his therapy, holding off on the more intense chemotherapy, proceeding with a lighter treatment, and finding the right combination of medicines, ones that could fight the cancer without drastically weakening Rhett’s immune system.
“He got through it, but it was hard,” Goldsby says.
A family changed
As Rhett began to improve and continue on with his chemo, the family was thrown into a new sense of normal. Navigating hospitals and treatment options was a 180-degree turn from life as they knew it.
“Everything is new, every person is new. It’s another world, different than the outside world,” Jodi says, adding that the information coming at the family “was like a fire hose.”
“As soon as you figure out one thing, they change it.”
While the family expected to grapple with the heavy emotional toll of Rhett’s illness, they weren’t prepared for the day-to-day logistical challenges that hospital visits and outpatient treatments posed, Jodi says.
“It’s like a full-time job to manage,” she says.
The impact was especially tough on Annesley, who went from playing games with her brother on the trampoline in the family’s backyard to spending a lot of time alone as her parents juggled work and Rhett’s chemotherapy schedule.
“It felt like I was an only child,” she says. “Mom and Dad would switch off sleeping overnight in the hospital. Whichever parent was home had to work, so I felt like I didn’t have anyone to play with.”
Through the ups and downs, the Krawitts say one thing never wavered — Rhett’s attitude toward his illness.
From the beginning, both parents say they made an effort to make sure Rhett knew as best he could what was happening.
“The doctors would look at us and ask us a question about him when he was sitting right there, and we’d say, ‘Ask him, engage him,’” Carl says. “We made him a part of it.”
He says they were both constantly surprised at how Rhett embraced the day-to-day challenges of his battle with cancer. He would remind his parents when it was time for him to take his medicine, greeting each dose with a resolve: “Get the bad guys out.”
Platform for advocacy
Carl says he sees that precocious, can-do attitude every time Rhett steps on a stage to deliver his speech. At first, Carl says, when the Leukemia & Lymphoma Society wanted to make Rhett their Boy of the Year in the Bay Area, he was apprehensive about putting Rhett in the spotlight. But Rhett immediately rose to the occasion.
The speaking opportunities have helped give Rhett a sense of confidence and, when he was undergoing treatment, provided a way for him to be around other people when so much of his time was spent alone in a hospital bed, Carl says.
What began as an honor for Rhett has developed into a platform for the family to advocate for funding for cancer research and clinical trials.
“Rhett got through it, but other kids don’t. We want everybody to survive,” Carl says.
Rhett finished his final treatment Feb. 14 — a feat that left him feeling happy, he says. His cancer is officially in remission and, if he remains in complete remission for five years, he will reach the point when most doctors feel comfortable saying his cancer has been cured, Carl says.
Though that February 2019 date is a milestone the family looks forward to, one thing the past several years have taught them is to live in the moment.
“It’s changed us for the better,” Carl says. “A lot of people say it’s just a blip in your life. But not for me, it’s not. This happened, and it’s going to happen to other people. It’s been pretty profound for us. This is part of who we are now.”
Emily Lavin is The Ark’s assistant news editor and Strawberry reporter.
