Fighting For You, MomOctober 11, 2014
Story by Jonathan Streetman
Photos by Heather Rousseau
He doesn’t remember when he first realized cancer existed. All he knew was that he didn’t know much about it.
It’s one of those words that doesn’t mean much to a kid.
Cancer. That thing other people get.
Then, when Landon Ernst was just 7 years old, his mother sat him down and told him she had cancer. She told him it might kill her. She told him they’d fight it.
Jill Ernst was 34 years old when she was diagnosed with a rare form of cancer called multiple myeloma, which develops in just 1 in every 17,000 people — that’s a 0.000058 percent chance.
According to the American Cancer Society, multiple myeloma affects mostly black men older than 65. Less than one percent of diagnosed cases are younger than 35. Even fewer are white females in otherwise fine health. The ACS says exposure to an atomic blast could lead to the development of multiple myeloma.
When Jill received the news, it was as if a bomb had been dropped in the middle of the Ernsts’ Jasper home. They’re still picking out shrapnel.
Jill remembers those early days. The pain started in her lower back and didn’t seem to ever fade. As little boys go, Landon was always running around, playing with neighborhood kids and having sleepovers on weekends. Daily tasks were becoming impossible for Jill, even with regular trips to the chiropractor.
Eventually she and Mark, her husband of 16 years, went to the hospital.
In November of 2010, the bomb hit.
The family learned that Jill’s plasma cells, an important part of the immune system deep in her bone marrow, were growing out of control. Tiny tumors called plasmacytomas were developing in her bones. The process resulted in low blood counts, which explained Jill’s unending sense of fatigue.
The pain would not cease.
The family found out Jill would have to undergo rounds of chemotherapy and later a stem cell transplant to rid her body of the cancerous cells.
They found out the five-year survival rate for patients with multiple myeloma is just 45 percent.
They wondered: What do we tell Landon?
Jill’s poofy hair, the do Landon loved so much, fell out. If she wasn’t at the hospital in Indianapolis or the Lange-Fuhs Cancer Center at Memorial Hospital in Jasper, she was sick in bed at home.
The sleepovers stopped. Landon played less. Instead he grabbed a cold washcloth when Jill passed out on the bathroom floor. He watched as she counted dozens of pills on the kitchen counter.
Landon also watched when Jill began to respond to the stem cell transplant about a year into her treatments. He sang around the house. Things were looking up. They might have this thing beat.
Then, almost two and half years after the transplant, another bomb. After all the pain and radiation and chemotherapy, Jill says the hardest thing she’s ever done was explain to her son exactly what cancer can do. And now, the cancer was back.
Jill and Landon cuddled against each other on the couch in their living room during a sunny afternoon in April. Mark hung out in the kitchen, disgusted with how easily Jill’s hair was falling from her scalp. Even after years of chemotherapy and all that comes with it, Mark still gets squeamish.
Jill didn’t seem to care. Landon was downright giddy.
“Dad, look what I got!” Landon delighted, holding a clump of Jill’s jet black hair he’d just plucked.
Jill’s mom, Clara Hall, arrived with a pair of scissors and her clippers. In a lawn chair in the driveway, Jill waited to lose her hair yet again.
Landon appeared anxious to help. Landon carefully buzzed out a chunk of hair right on top of Jill’s head.
“Does it hurt, mom? How does it feel to be bald?” He asked.
Not very good, Landon.
“This is the first time I’ve seen you look like a cancer patient. It’s bad,” Mark said. Mark is blunt. After four years of fighting, there’s no need to be anyway else. He squirmed as Jill picked little hairs the clippers left behind.
“It is what it is,” Jill said. “You know the chemo is working if you lose it.”
Landon wasn’t buying it.
“Mom, why are you crying?” he asked, as she wiped her face.
“I don’t cry. You know that.”
It was the answer he was looking for. Landon ran inside and grabbed a bag of chips while Clara helped wash Jill’s scalp clean in the bathroom. When Jill emerged with Clara, Landon wiped the chip dust off his fingers and, almost eye-to-eye with his mother, placed one hand on top of her head.
“Feels like a baby’s butt,” he said, laughing.
Jill laughed, too. It’s only hair. She can wear a hat. But it is a big deal. She wouldn’t have to lose it if she wasn’t dying. Maybe the chemo will work this time.
Jill has a bucket list.
She spent so much time in and out of the hospital this summer, making regular five-day trips to Indianapolis for treatment, Mark and Landon were often left to fend for themselves.
Weeks of monotony were punctuated with fun activities as Jill worked through her bucket list. She and Mark gambled at the casino in French Lick. The family zip-lined in Shoals and visited the Evansville Zoo. They made plans to attend at least one Notre Dame football game this season. Jill began adding more items to her list. Landon started one of his own.
Everywhere they’ve gone, Jill has taken photos. Memories last forever.
During one of Jill’s trips to Indianapolis, Mark and Landon stayed. A curious fellow, Landon roamed the wings of Franciscan St. Francis Health, meeting Jill’s doctors and asking which machine does what.
When Jill rested, Mark and Landon played arcade games at Greatimes Family Fun Park together for hours. Every evening they walked to a nearby Steak N Shake, bringing back a chocolate milkshake and fries for Jill because that’s all she could keep down. Since Landon was just a few months away from beginning middle school, Jill helped him practice combination locks so he’d be prepared to open his locker on the first day.
In May, Landon experienced death for the first time. His 90-year-old great-grandfather Guy Padgett died.
“I think it’s good for him to see what death is,” Jill said, noting that Landon still has other great-grandparents and grandparents alive. “He has a lot of death coming up.”
Soon after, Jill began another round of chemotherapy. This time, the attack was even more aggressive.
“I think they’re running out of options,” she said, interlocking her fingers with Landon’s.
“What are they going to give you when they run out?” Landon asked.
Jill couldn’t find the words.
“I want you to die of natural causes.”
“Me too, honey.”
“I have faith in you, mom, that you’re going to make it to 120.”
“Right now I’m shooting for 40.”
“Why don’t you just go into a secret doctor’s lab and say ‘Make me a cure!’” Landon joked, reminiscent of a scene in a cartoon.
Jill smiled at her son with pain in her eyes. If only.
Landon’s light at the end of the summer was always camp.
Camp Kesem is a nationwide organization dedicated to and for children affected by a parent’s cancer. For a week, free of charge, children ages 6 to 16 who have had to grow up too fast while watching a parent battle cancer can simply be kids.
For Landon, camp represented the one place he wasn’t the kid with a sick mom. He didn’t have to explain anything. Everyone already knew and understood and they left it at that.
One late July afternoon, several days before camp began, Landon and Jill filled out registration forms. One question in particular stumped Landon for just a moment: What are you most looking forward to about camp?
“I get to go to a camp where the kids know how I feel,” he wrote.
Camp Kesem Indiana University, the division of the organization based in Bloomington, also requires that every camper and counselor choose a new name, a moniker that allows them to be whoever they want. Landon’s decision was easy. He wanted to be Smiley.
On Sunday, July 27, Mark and Jill packed up their car and took their son to camp at picturesque YMCA Camp Carson in Princeton. The ensuing week was a whirlwind of activities. Smiley never stopped smiling.
This year at Camp Kesem IU, 55 college students-turned-counselors volunteered their time, energy and a shoulder to lean on for a total of 120 campers from Indiana, Kentucky and Ohio. The camp is organized and run by the students with assistance from the national group.
Smiley, alongside bunk mates Captain America, Sonic, Dr. Awesome and Hershey, did anything and everything a kid at summer camp could dream of.
They soared down a zip-line before landing in a lake. They skidded down slip-and-slides and fired squirt guns. They competed in the Messy Olympics, a gigantic food fight at the end of the week. They sprayed themselves in the face with sunblock, perhaps applying it on their own for the first time without mom’s help. They played games and sang songs for hours every day.
Campers also engaged in cabin chats each night. Often times, chat were light-hearted, but sometimes cancer surfaced. After all, that’s why they were there. But camp wasn’t about cancer. It was about fun, and Smiley had a lot of it.
“I’ve never heard a more appropriate camp name,” Pipes said. Pipes, one of Landon’s counselors, is Tyler Kniess, a junior at Indiana University. “All week, everything has just been so fun to him. Whatever we do it’s the most fun thing yet.
“He’s always so Smiley. It’s just the perfect name for him.”
At the end of the week, Camp Kesem organizers lead an empowerment ceremony. The purpose is to allow campers and counselors to share whatever is on their mind, and the event is often emotional. Before Landon left for camp, Jill asked if he would share anything about her, about their family.
“No way. That stuff’s confidential,” he said then.
By the time of the empowerment ceremony, he’d changed his mind.
In front of the entire camp, Smiley let it out. He spoke about his mom’s illness and he cried with his new friends.
Camp counselor Kayla Brahm, a Ferdinand native and IU sophomore known as Lala to campers, said Landon was upset when he came back to his seat.
“He was worried that he hadn’t done a good job, that he forgot something,” she said. “I told him that he did a great job and that I was so proud of him. I just told him if he thinks of anything he wants to add, he can save it for next year’s ceremony.”
The next day Jill, Clara and Mark, who found somebody to work his shift at Holiday Foods grocery store in Jasper, headed back to Princeton to retrieve Smiley.
After a potluck lunch, counselors, campers and family piled into the lodge for a final presentation. Landon sat up front with the campers. Jill and Clara sat together in the crowd. Mark stood at the back.
Mark is tough and he’s honest and he’s funny and his laugh can diffuse any situation. He relies on his humor as a defense mechanism when things get rough.
When counselors played a video recapping the week and Mark saw the campers, all having the time of their lives, his defense crashed. A photo of Landon covered in flour from Messy Olympics rolled through and Mark pointed and smiled broadly, flooded with joy. He didn’t bother wiping away the tear rolling down his cheek.
“You know, cancer doesn’t mean a lot until it hits home,” he said. “There’s just sickness every day. There’s no escaping it.”
For one week, Smiley escaped.
Before the final goodbye hugs, the campers gathered into one more song circle outside around the flag pole. With one arm around his mom and the other around his counselor, Pipes, Smiley and the rest of the group sang a camp favorite.
Sometimes in our lives
We all have pain, we all have sorrow
But if we are wise, we know that there’s always tomorrow.
Landon looked at Jill and noticed she, too, had tears streaming down her face.
“Why are you crying, mom?”
This time, her tears were tears of joy.
“It just makes me so happy to see you this happy.”
Lean on me when you’re not strong
And I’ll be your friend, I’ll help you carry on.
For it won’t be long
’Til I’m gonna need somebody to lean on
Landon has grown up way too fast.
His childhood was cut short by a ruthless disease he doesn’t even have. But that’s the thing about cancer. It spreads.
But ever since Camp Kesem, Landon has begun to blossom. He started sixth grade at Jasper Middle School this fall and aced the combination locks. He joined the cross country team and discovered he enjoyed running. When he’s not practicing or at meets, he’s checking the newspaper for 5K runs in the area.
Landon ran the Heartland 5K in Jasper over Labor Day weekend. Continuing the family tradition of being a die-hard Notre Dame fan, he ran in the Shamrock Series 5K in Indianapolis before watching with his mom and dad as the Fighting Irish beat Purdue at Lucas Oil Stadium later that day.
His cross country ribbons and Shamrock Series participatory medal and runner’s bib are proudly displayed in the living room.
Recently Landon and Jill, accompanied by her sister-in-law Lisa Ruhe and daughters Kortney and Kendyl, participated in Hoosiers Outrun Cancer at IU’s Memorial Stadium in Bloomington.
As soon as they arrived, bright and early on Sept. 20, Landon looked for the signature tie-dye shirts of the Camp Kesem counselors. He’d been looking forward to seeing his friends and counselors for weeks.
“Smiley! How are you, bud?”
Each counselor’s greeting was warmer than the last and was accompanied by a hug or high-five. Captain America, Landon’s cabin mate at camp, was also there.
Each runner was given a card to pin to the back of his or her shirt. On the top read “I am running in celebration of” and Landon filled in his honorees.
“I am running in celebration of Jill Ernst, Lenny Ernst, Great Grandma Hall, Great Grandpa Cleo.”
Jill helped him secure the paper to Landon’s tie-dye T-shirt.
“Today is about hope, it’s about love, it’s about compassion. Today is about survival,” an announcer said over the speakers before sending the 5,000 runners on their way.
Jill and Lisa participated in the shorter family walk around the stadium. Landon had his sights set on the 5K.
Runners weaved through Bloomington, up and down rolling hills on the IU campus. Jill and Lisa and her girls cheered on every runner in a Camp Kesem T-shirt as they approached the finish line. It was a hot morning and many runners looked exhausted as they headed into Memorial Stadium to finish with a lap around the football field.
Landon turned a corner and strode in front of Jill just in time for her to get a picture with her phone. He was one of the few runners smiling.
With the highs come the lows.
Jill’s treatments have failed to make any significant impact on her cancer. Doctors have ruled out another stem cell transplant. The best bet now is to participate in a clinical trial for a treatment, an option favored by Jill’s doctors in Indy.
The thing is, Jill will have to travel to another state to participate. The list of hospitals about to enter into the trial Jill needs is slim. Chicago. Columbus. Louisville. Other hospitals in Houston, Boston and Rochestor, Minn. have her on a waiting list.
Mark wants Jill to stay as close as possible, since Jill could be gone for months. Jill wants the best treatment available, even if that means traveling far away. They all want her to live. So what now?
They’ve done their best to prepare Landon for the worst.
“We’ve talked to Landon about death,” Jill said. “We’ve told him what could happen and that I could die.”
It’s never easy planning for life after your death, but Jill is at peace with what could happen. She could die. She knows that. Her only fears now are for her husband and her son.
“I just hope I don’t suffer in the end. With this type of cancer, people can suffer and I don’t want Landon to see me go through that,” Jill said.
Her hair has begun to return and, like her son, she always has a smile for everyone. Too many people mistake that for progress, she said. They don’t understand.
“People see me and they think I look OK, but they don’t know that I’m crumbling inside. I really am, I am crumbling inside.”
Mark and Landon understand all too well.
There’s no escaping the sickness.
On Sept. 26, Jill’s friends and family organized a Friday night of dinner and dancing at the Jasper Outdoor Recreation Center. With mounting medical bills and looming travel costs, the fundraiser allowed the community to rally around a family trying to clear so many hurdles on its own.
On the day of the benefit, many teachers at Jasper Middle School wore “I Pray for Jill Ernst” T-shirts. In between periods in the hallway, Landon thanked one of the teachers for showing her support.
“Why do you say that?” she asked, unaware of the little sixth-grader’s identity.
“Jill Ernst is my mom,” Landon proudly replied.
Landon stayed home during the benefit, playing video games with friend and JMS seventh-grader Chase Mehringer instead of sitting at a table and listening to speeches.
He gave his mom a kiss goodbye before she put on her lipstick. Then he ducked into the family’s basement. Surrounded by Notre Dame memorabilia and photos of the family from a happier time, Landon and Chase did what normal middle school boys do. They played.
They played dodgeball around a glass case of classic Coke bottles and nicknacks. Landon knocked over his soft drink and covered the spill with a blanket. The boys jumped up and down after a successful round of the game “Call of Duty.” For a moment, about the time Jill was delivering a speech at her benefit and when Mark began to cry in front of all his friends and family, Landon didn’t have a care in the world.
The care-free moments have and will become more important, more elusive.
Soon, Jill will have to travel to participate in a clinical trial which may not save her life. Mark and Landon will have to adjust to life without her. They’ll eventually settle into a routine, but Jill’s absence will be felt every minute of every day.
Mark and Landon pray for her. They pray the treatment works. They pray Jill can say she’s cancer-free.
They hope beyond hope she comes back home.
No matter what, they all keep fighting.
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