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Home to Stay: Family battles baby's brain tumor

POSTED AT 09:52 PM ON Jul. 25, 2012  (UPDATED AT 04:33 PM ON Jul. 26, 2012)

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Nestled in a small bed in a large room, a baby girl sleeps peacefully.

Soon, the small bed with the small girl begins to rotate and lock into place, preparing for a beam of protons to be directed at her head from three different angles.

From an adjacent room, doctors, technicians and nurses watch 19-month-old Willa Frankenberger through a small black-and-white TV screen while operating the beam.

On screen, she looks like a new doll still cradled in the wrappings of the package.

Eyes closed, her lips remain delicately pursed around a tube bringing her oxygen during the 15-second treatment.

This isn’t the first time Willa has been asleep in this position. Or the second. Or even the 10th.

Therapies, anesthesia and radio treatments like this one have become parts of the new life Willa and her parents,

Jim Frankenberger and Jody Held, have had to adopt since Willa was diagnosed with anaplastic ependyoma, a type of brain tumor, on July 28,2011.

March 22was a celebration. That day was her 30th and final treatment in a series that required a temporary move to Bloomington so she could receive it five days a week for six straight weeks. Today, they’re going home to Louisville, Ky.

Today is different.

Down the hall, her parents and grandparents wait for her return.

***

On Hycliffe Avenue in St. Matthews, a suburb nestled just seven minutes past downtown Louisville on I-64, lawns are small but green, and on a Sunday afternoon in April, families are outside washing cars, walking dogs and playing basketball. Jim and Jody’s dusty red station wagon is parked on a patch of gravel at the side of their home.

The family dogs, 19-year-old Sweet Pea and 13-year-old Buster, waddle and scurry to meet visitors at the aluminum fence, tails wagging. Though the grass is a bit longer than Jim would like, it’s almost as if they never left.

But through the screen door, there are small reminders that something has changed. A 20-month-old Willa sits on the kitchen floor with Jody, playing and exploring with a set of alphabet magnets on the refrigerator.

From behind, you can see the 4-inch-long scar spanning the entire back of Willa’s head, a reminder of her first operation at Kosair Children’s Hospital in Louisville.

Bags of medication, tubs of syringes and eyedroppers sit on the kitchen counter. And on the refrigerator, a paper fortune hangs amidst a collection of pet photos and magnets.

“This year, your family will be your highest priority,” it reads.

A few weeks shy of her first birthday, Willa was rushed to the pediatric intensive care unit at Kosair for emergency surgery to relieve the pressure of cerebral-spinal fluid building in her head.

The next day, she had an eight-hour surgery to cut out a 2-inch tumor. Four weeks of no sleep and uncertainty later, Willa and her parents relocated to St. Jude Children’s Research Hospital for Chemotherapy.

During their five-month stay, Jody kept a journal.

11/20
Willa: She is having bone pain and fever and does not want to stay in the room! She is tired and achy, but still such a trooper. I keep telling myself we’re almost done. 70% done. One more month, and then home!

11/24
Grandma brought turkey on Friday, but it was too soon for Willa. She wanted to eat what was on our plates, but couldn’t, so she was very mad. She cried; I cried. Hopefully it will change for the better soon!

From St. Jude, they came to Bloomington to begin proton therapy.

While traditional radiation delivers only about 20 percent of the maximum dose to tissues beneath the skin, proton treatment is able to deliver the maximum dose at the tumor while avoiding tissue beyond the tumor.

The IU Health Proton Therapy Center is one of 10 proton therapy centers in the country. About 300 children are treated in Bloomington each year. 

“The thing that’s most challenging, not to belittle other kinds of cancer, but if it’s spread to the brain, that’s most serious,” Jody says. “It takes away the ability to move and see and eat. A lot more’s at stake. It’s not just a matter of sitting around and taking chemo.”

Willa also sees an occupational therapist, a physical therapist and a speech therapist multiple times per week.

***

Before the diagnosis, Jim, 47, was a commercial photographer. Before the diagnosis, Jody practiced craniosacral and massage therapy, which serve as alternatives to traditional medicine used for treating stress, migraines and chronic pain.

“This whole experience has been a real challenge to my practice,” Jody says. “It’s opened my eyes to Western medicine and helped me realize that it’s sometimes all there is.”

Both had to stop work after Willa’s diagnosis, though since they completed treatment in Bloomington, Jody has begun to see some of her clients again. Jim and Jody have continued to use their skills to help her and document this experience.

“This is why we’re here,” Jody said. “Willa picked us because she knew we’d be able to care for her.”

From the moment Willa was born, Jim began snapping thousands and thousands of photos of her. When Willa got sick, he took even more.

Jody sent this email to family and friends the day of Willa’s diagnosis, July 28: “On Thursday, Jim and I received the news that Willa Rose has a 2 inch mass in the fourth ventricle of her brain.

They put in a drain to take the pressure off her brain, and on Friday they will remove the mass. Please keep Willa in your prayers and we’ll hope that the tumor is only pressing on her brainstem, and is not wrapped into it.

She is the best thing that ever happened to us. There are no more words right now because my heart is in my throat.”

***

Gulping down a bowl of cereal, Jim has only a few minutes to finish his breakfast. On a morning like this, he cannot let his daughter see him with food.    

Willa and Jody are on the other side of the closed apartment doo, giving Jim a few moments of reprieve before they switch to let Jody eat. 

This will be a long morning.

At about 8 a.m., Jim receives a phone call from the proton therapy center alerting him that one of the proton beams would be down for the day.

This is the first time a proton beam has been down at the center since the family came to Bloomington for treatment six weeks ago. So, rather than getting Willa ready to go, Jim and Jody have a new task for the morning: distraction. 

Reading stories, walking outside and searching for doggies out of their seventh-floor apartment window are all ways to divert Willa’s attention from the fact that she hasn’t eaten in the last eight hours and won’t be able to again for another eight.

But for Jim and Jody, their temporary stay in Bloomington has been what Jim calls “a cake walk,” compared to what they have endured during the past nine months.

After breakfast, Willa gets to pick out her clothes for the day.

“Sick children don’t have a say in anything when they’re in hospitals, so we try to give Willa as many choices as possible whenever we can,” Jody says.

Perched on Jody’s knee in her diaper, Willa chooses between polka dot or pink pants while Jim kneels next to them in the bedroom. Brow furrowed, a common expression for Willa, she considers both options and points to the polka dots.

“Yes, Willa, that way you’re still wearing pink because I know you love your pink,” Jody says as she squeezes Willa tight, careful not to jostle the port near her left shoulder and MIC-KEY button in her belly button.

Though they were finally removed in July, both became a part of her body when treatment began.

The port allowed drugs to be injected and blood to be drawn without the pain of inserting an IV, and the MIC-KEY button let liquid be inserted directly to her stomach.

Though she initially lost many of her gross motor skills, which include sitting, standing and walking, her fine motor skills appear much better than those of any other child of her age.

She’s able to help Jim and Jody inject a small syringe full of Zofran, a nausea medication or water into the MIC-KEY. While it sounds invasive, Willa has adapted to this kind of life.

At Kosair, she had so many tubes and wires traveling in and out of her body that Jody could barely hold her. Sometimes during chemo at St. Jude, the pain was so much she would grab onto the bars and scream, Jim says. 

But whatever pain she’s been through, she’s not expected to have any memory of this as she grows older.

Jim and Jody are keeping a box of mementos from this experience that Jim says they will use to show Willa how strong she is and how much she’s overcome when she’s older.

“I think she’s changed,” Jim says. “There’s no way to go through this and not be a changed person.”  

***

Back in the waiting room at the proton therapy center, grandparents Carol and Phil Held are waiting for word that Willa has woken from the anesthesia.

This was the first time since Willa’s diagnosis that her grandparents hadn’t been with her every step of the way. While at St. Jude, Carol and Phil switched off weeks they would spend helping Jody and Jim take care of Willa.

“We would stop at the same rest stop and say, ‘Hi’ to each other and then be on our way again,” Carol says.

At the end of each patient’s full treatment at the center, they get to ring a small, golden bell hanging on the wall outside one treatment room. Jody held Willa as she rang the bell.

Jim, Carol, Phil and Dr. Jeffrey Buchsbaum, the family’s radiation oncologist, watched and cheered her on. The celebration out in the waiting room was small and short. Willa was hungry, having not eaten for hours because of the anesthesia.

It was time to go home.

“We don’t call this home. This is the apartment. Home is in Louisville,” Jody says.    
Soon after, Jim, Jody and Willa packed up their Volvo and Jody’s parents’ mini-van and drove back to Louisville. They never kept much at the apartment.

“When we leave something, there’s a song we sing. ‘Bye-bye proton, bye-bye apartment,’ so Willa knows that we are done with something,” Jody says.

Following their last proton therapy treatment, they had to go back to St. Jude for a few days to get another MRI to see whether the proton therapy had worked.

If it hadn’t, they would need to begin a six-month round of oral chemotherapy.

The MRI was all clear. They could go home.

Back to their house on the corner. Back to Sweet Pea. Back to Buster. Back to the cats. Back to life.

Jody says she told Willa one thing.

“I said, ‘This is our forever home,’ and she just smiled.”

She’ll have to have checkups and MRI scans for the rest of her life, no matter what.

And she has one more surgery planned for Aug. 6 to remove a fistula and repair the hernia adjacent to the G-tube stoma in her stomach.

But as the cranial nerves that were damaged continue to heal, she’s expected to eventually function on a level typical for someone her age.

There is always the fear that it might return.

“We’re always watching for signs that something might be back,” Jim says. “If they vomit, is there something pressing on their nerve? If there’s a staring spell, is there a tumor pressing on something or is it just a staring spell?”

Jody related their homecoming to the return of a soldier.

“When you’re used to being on edge, in a hyper-vigilant state,” Jody says. “When you come back there’s a sense of, ‘What do I do now?’”

Back at home, Jim and Jody are trying to find their normal again.

“At the hospital, we didn’t even have names,” Jody says. “I was Mom and he was Dad. It’s nice to have that piece of myself back.”

Running errands, sending emails and cleaning the house that they’ve left mostly in the care of family and neighbors are all part of this readjustment.

While they struggle to leave Willa alone to play or relax for more than a few minutes, she has been given more freedom since her MIC-KEY and port were removed May 17.

“We’re just letting her be, trying to give her as much space as possible,” Jody says. “Let her thrive on the independence.” 

Back home, one year later, she has replaced that furrowed brow with a small, curling smile, her eyes shining extra bright when they see Jim or Jody.

“She’s vibrant. She’s vivacious,” Jim says. “The cancer basically robbed us of that year. But we had to give up that year to be able to get our girl back.”

***

Some of Jody’s cousins and friends have had dreams about Willa, picturing her dancing with Jim at her wedding. Jim has had dreams, too.

Located in the front corner of their home, Jim and Jody have a shared office. There are large windows in two of the four walls, where streams of natural light spill in on sunny days.

Now cluttered with remnants of the past year, the desk is split into two identical sides facing the outside wall. Through the glass, beyond the porch, Jim can see the intersection of Breckenridge Lane and Hycliffe Avenue.

On school mornings, that quiet intersection serves as a bus stop.

A few weeks after Willa was diagnosed, from his desk, Jim saw a neighbor standing with his 6-year-old daughter waiting for the bus.    

“That’s what I want,” Jim says with wet eyes, back at the apartment in Bloomington. “Dancing at her wedding would be nice, but that is what I want now.”  

 

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