Kennedy's Courage: There’s No Place Like Home

Elsa walks through her castle, with her long, blonde locks falling down her back. She sings, “Let It Go.”

And then her parents pick up their little princess. She straightens her long wig and they head to the elevator, back to her room at Cook Children’s. It’s time for another round of chemotherapy as this 2-year-old fights one of the rarest forms of cancer known to science.

The reality of Kennedy Coke’s life may be even more of an adventure than her hero, Elsa. Even Disney’s Queen of Arendelle never faced the challenges of this little girl.

In late November 2015, Kennedy coughed all Saturday night and was running a fever on Sunday.

Of course these things always happen over the weekend and her parents, Wes and Jodi, decided not to wait until Monday to take her to their Cook Children’s pediatrician, Catherine Hampton, D.O. Instead, they took her to a nearby walk-in clinic, expecting to be in and out with an antibiotic.

Kennedy received a slew of tests for strep, flu and RSV. They all came back negative. Jodi became frustrated when they asked for a lung X-ray. But she gave the go-ahead just in case her daughter had pneumonia.

The X-ray came back inconclusive on pneumonia, but it was something else that left Jodi and Wes devastated.

“The X-ray showed us the picture,” Jodi said. “We learned later that it was a collapsed lung and that’s what looked like pneumonia. But they said, “Up here, there’s a mass and then we basically fell apart.”

The mass was on the upper right lobe of Kennedy’s lung. When Wes and Jodi returned home somewhere around 6 p.m., they called the nursing triage line offered to Cook Children’s patients. The nurse on the line comforted Jodi and made an appointment for Dr. Hampton at 10 a.m. the next morning.

Little did the family know they were beginning a journey that mirrored another tale beloved by children around the world. They would learn the true meaning of heart, brains and courage.

And they would learn there truly is no place like home and sometimes home can mean a children’s hospital that a little girl swears is her castle.

Heart

Wes and Jodi came home that evening and called their employers to let them know they wouldn’t be coming in to work the next day.

Dr. Hampton examined Kennedy and sent the family to Cook Children’s Northeast Hospital for new X-rays and examination. The images showed that Kennedy never had pneumonia and it was a collapsed lung that was causing her problems with coughing and breathing.

Unfortunately, it also confirmed the mass.

From Northeast, the Coke family headed to Cook Children’s Medical Center. Nancy Dambro, M.D., a Cook Children’s pulmonologist, discovered the lobe of Kennedy’s lung had probably been nonfunctional since birth.

Perhaps, it’s only purpose was to help doctors find the mass and in the process, save Kennedy’s life.

On Dec. 8, 2015, Jose Iglesias, M.D., FACS, FAAP, a pediatric surgeon at Cook Children’s performed the surgery that ended up taking Kennedy’s whole upper lobe of her right lung.

Doctors expected the mass to be a part of the congenital lung cyst, similar to what her father had removed when he was 18 years old.

But there was a 1 percent chance it could be a rare form of cancer known as Type II pleuropulmonary blastoma.

Most surgeons never see a case in their career. Only seven cases have been seen at Cook Children’s since 1992 and only about 470 total cases have been diagnosed in the world. Ever.

That would be the worst case scenario and that would be what the doctors found.

Wes and Jodi watched surgeons walk down the hallway that led to the waiting room. They saw thumbs up being given to other parents and they saw hugs and tears of joy. But the moment they saw Dr. Iglesias walking toward them, they knew the news was not good.

Dr. Iglesias told Wes and Jodi it looked like it was the rare form of cancer, but they would know for sure the next day.

On Dec. 9, while Kennedy was sleeping, Dr. Iglesias came in and crouched down next to the family.

“For the record, we love Dr. Iglesias,” Wes said.

“He’s another person at Cook Children’s who saved our daughter’s life,” Jodi said.

But that’s today. A year ago, the couple remained in a constant blur of bad news and confusion.

“We had our breakdown. I remember immediately saying things like, ‘I’m going to shave my head.’ What? I just didn’t know what to do,” Jodi said. “Thankfully, my mom was there and she was a lot more level headed than we were at the time. She was the one writing things down. I remember a chaplain was there. That was so impactful to me. She was the chaplain for the recovery room and she just stood there, with us.”

Within minutes after being told it was cancer, the family was whisked off once again. Kennedy was taken to the Hematology and Oncology floor of Cook Children’s. The night of Kennedy’s diagnosis, the phone rang in their room.

“Jodi, it’s Dr. Hampton. I’m coming out there. I’ll be there.”

“Dr. Hampton has been very supportive of our family,” Jodi said. “When she came out here, she brought her Bible with her. She never opened it, but just held it. She said, ‘I don’t even know what to say to you guys.’ We were her first patient in her practice who had cancer. I think it hit her pretty hard. But she’s been just amazing ever since. We text her every time we have an update with our scans. She always replies back. We love her.”

On the day of the diagnosis, Wes and Jodi met a new doctor. Anish K. Ray, M.D., became Kennedy’s oncologist and has been at the head of her care ever since.

If you want Kennedy to open her arms up wide and see her smile real big, tell her she’s going to visit Dr. Ray. Every time he walks in to her room, Kennedy demands a hug.

“He always says, ‘No one is ever happy to see me. This is great,’” Jodi said.

Jodi laughs at the time her burly 6-foot, 6-inch, bearded husband picked up “this distinguished” doctor to give him a big hug after Dr. Ray gave the good news that their daughter showed no signs of cancer.

“He’s my best friend,” Wes said. “He doesn’t know it, but he’s my soulmate now.”

Brains

During her surgery, Dr. Iglesias removed the mass that turned out to be a cyst. Inside the cyst was a tiny tumor.

A couple of days after the surgery, a full body scan from brain to pelvis showed no evidence of cancer. But to continue to fight off the threat of the cancer returning, Kennedy began her first of 12 courses of chemotherapy that ended on Aug. 24, 2016.

“We’re fighting the hypothetical,” Wes said.

With the fight underway and the family winning it so far, the Cokes began to explore their daughter’s rare form of cancer. While plenty can be found on leukemia or neuroblastoma, Type II pleuropulmonary blastoma is a mystery to most, including the medical field.

Jodi and Wes say they belong to a Facebook support group with only about 170 people on it.

Kennedy’s chemo was given in accordance with the International Pleuropulmonary Blastoma Treatment Study. Dr. Ray's expertise has prevented the family from traveling to another part of the country for care.

“Most children’s hospitals would never see this type of cancer once and Cook Children’s has seen it seven times,” Jodi said. “They have more experience than most and we trust Dr. Ray so much. It’s a relief for us because we didn’t have to pack up and move to Houston or New York or Memphis. Dr. Ray told us, ‘I wouldn’t hesitate to transfer you, but this is the best place for you all. We all share information, so you don’t have to pack up and move.”

Because of the rarity of Kennedy’s disease, the family was approached to be a part of another important research study, ABTR01B1 from Children’s Oncology Group to learn more about her form of cancer. The study collects and stores samples of tumor tissue, blood and bone marrow from young patients with cancer to study in the laboratory to help the study of cancer in the future. They didn’t hesitate to say yes.

“It’s not necessarily even going to help her,” Wes said. “But there are kids running around right now, wherever, and they’ve got cancer and don’t know it yet. There’s always going to be kids with cancer. If we can provide even a slice of help or even be able to be a part of something that helps some other family’s child have an easier time of it or even possibly get a cure … Who knows? I guess that help is what we have to offer.”

Wes and Jodi can’t believe they’ve gone through this, but they have made it together. They call their tragedy a faith shaker and they admit to being angry at God after the diagnosis. But they have made it, with their faith and their marriage intact.

“It has thankfully brought us really close together as a couple,” Jodi said “Even though we are polar opposite people. We’re very different from each other. We’re the typical opposites-attract couple. We process things much differently. His fears will be very different than my reaction and my fears will be very different than his. We know people whose marriages have ended through pediatric cancer. You can certainly see why.”

“You can grow apart or you can grow closer,” Wes said. “It has brought us together as a family. You love your kid more every day. You can’t believe the depth of love you have for your child when you see her go through this.”

Courage

Kennedy turned 2 years old at Cook Children's. She also celebrated Christmas at the medical center.

"It was all pretty overwhelming, but in a good way," Jodi said. "To be at Cook Children's at Christmas was really special. Kennedy had her first chemo on a couple of days before Christmas. She was just overwhelmed. People brought her gifts and there were so many decorations. She loved it. How decked out it was and there were so many special things going on at Cook Children's that it got us through a very difficult time."

Shortly after Christmas, the Coke family returned home where everything was so different, but yet the same. They still had their same "hilarious, goofy, chatty" little girl. But things were different now, too.

Kennedy plays doctor knowing a bit too much about how stethoscopes and heart monitors work. She's spent so many days at the medical center with really smart people, her parents say she has an incredible vocabulary for a child who is not yet 3 years old.

And, she owns a castle.

When she has an early morning appointment to Cook Children's, she sometimes doesn't wake up in the best of moods. Until she's told it's time to head to her castle and then she's wide awake.

"She used to have long hair. Long enough to be in pig tails. She sat there, eating jellybeans and watching Frozen while we shaved her head," Jodi said. "We were all crying and she couldn't have cared less."

Kennedy's hair is returning. Peach fuzz is underneath her Elsa wig that she wears even to bed on some nights.

"All signs are pointing to good," Wes said. "At first, we were the worst case scenario and now ... And now, we're the best case, worst scenario."

For now, the Coke family has been through the tornado, dropped the house on the wicked witch and returned home.

Even if it's a medical center that saved a little princess' life.

#erasekidcancer

To support kids like Kennedy and the Cook Children’s Hematology and Oncology Center, visit erasekidcancer.org. September is Childhood Cancer Awareness Month. This month, we're pulling back the curtain to share what Cook Children's is doing to fight pediatric cancer. Stories will be shared to reflect the hearts of our caring professionals and volunteers, the brains of our clinicians and researchers and the courage of our patients and families.