Brain Tumor Action Network

URL: http://mydesert.com/apps/pbcs.dll/…

Maggie Downs
The Desert Sun

It was the kind of day that was so perfect, a photograph couldn’t do it justice.

But Kristen Tanner was willing to try.

“Take our picture,” she urged her husband, Andrew.

She sat in the overstuffed, flowered chair by the window of her home in Palm Desert, sunlight streaming through the shutters, her children balanced on her lap. Rambunctious, 2-year-old Carson perched on one of Kristen’s legs, his wide smile overtaking most of his face, while baby Natalie settled into the curve of her mother’s lap.

This was everything the pretty brunette had ever imagined. It was, after all, her first Mother’s Day with Natalie, the beautiful baby girl she always wanted.

Kristen was just 19 when she lost her mother to lung cancer. The missing mother-daughter bond made her feel as hollow as a cavern. And now here was Natalie, the sweetest, softest, most giggly way to make her whole again. In tribute, Kristen chose her mother’s name, Jeanette, for her daughter’s middle name.

That night, in the still of darkness, Kristen turned on the baby monitor and listened to Natalie breathe. A tiny metronome of inhales and exhales. It made Kristen’s heart swell like a balloon to know her sleeping children were comfortable, safe, well.

A perfect end to a perfect day.

In the early morning, while Kristen laid Natalie on the changing table, she wiggled a stuffed toy above the baby’s head. It seemed like the child was trying to look at the toy, but couldn’t. Her eyeballs quivered slightly.

Kristen, a former nurse, thought something was off.

It was something she noticed the previous day during her Mother’s Day breakfast at the Sunshine Café. The child’s eyes were normally big and brilliant, like ice blue marbles, but now they seemed downcast and droopy. Andrew even joked, “Hey, why’s Natalie giving me those devil eyes?”

It was probably nothing, Kristen thought. She dismissed it.

Kristen dropped off Carson at a friend’s house for a play date. She couldn’t shake the odd feeling about Natalie’s eyes and asked her friend’s mother, also a nurse, for a second opinion. The woman agreed Natalie’s eyes looked strange.

A cold knife of fear dug through Kristen’s gut.

Within seconds, she raced for her phone and called her pediatrician. The receptionist urged her to bring Natalie in right away. Kristen left Carson with the friend and sped to the office. It must be urgent or they wouldn’t have agreed to see the baby so quickly.

There, the nurse looked at Natalie’s eyes, measured the circumference of her head, let out a low murmur - “Hmmm” - and double-checked.

Natalie’s head had grown dramatically over the past two weeks. The doctor suspected that massive amounts of fluid had collected around the brain. He said Natalie should get examined at Loma Linda University Children’s Hospital right away. There wasn’t any need to panic, he told Kristen. It would just help her peace of mind to get this done quickly.

While the pediatrician made the arrangements for the baby at Loma Linda, Kristen paced her doctor’s lobby.

“I’m just sick about this,” she told the receptionist.

Honey, that’s what kids do, the receptionist replied. They make us worry.

“Well, she’s only 3 months old,” Kristen said. “She’s starting early.”

Kristen called Andrew and asked him to pack a bag. They drove to the hospital, anxious and stressed.

They didn’t know where they were going. They missed a couple turns and drove unfamiliar streets. Amid the tension, they discussed the possible source of the fluid. Maybe it was some sort of clot. Maybe a valve in her brain needed unclogging.

It was likely just a simple fix, Andrew said. He didn’t even know why he should tag along. “What good can I do at the hospital?” he asked.

The rest of the day was long and passed with a series of doctors, tests, scans. The results were inconclusive. The baby needed to stay overnight.

In the pediatric unit, Kristen tucked Natalie into a metal crib and retreated under a blanket on the pullout chair.

Sleep was fitful; her heart felt fractured. Machines hummed and beeped. The child on the other side of the room’s curtain wailed for nurses who walked with heavy feet.

Every time Kristen closed her eyes, she wished they could be back home in their beds, sleeping comfortably. She wanted to rewind time, to live yesterday all over again.

The next morning brought urgent news from the hospital staff.

The CT scan showed an alarming amount of fluid pressing against Natalie’s brain. She also had some kind of mass on the back of her head, like a shadow cloaked over the brain stem.

It looked bad.

Even then, the words were like rain on a hard desert floor. They simply didn’t penetrate. When a social worker tried to arrange a room for the parents to stay in the Ronald McDonald House, Kristen and Andrew shook their heads and declined the offer.

“Why would we need a room?” Kristen said. “We’ll be out of here in a day or two.”

Doctors were going to remove the mass, they figured. They would go home and be a family again.

Only it wasn’t that easy.

Natalie needed a dangerous brain surgery and faced a lot of risks, from paralysis to death. Sleeplessness became fear became panic.

Andrew gently suggested that maybe they should call a preacher from their church, St. Margaret’s Episcopal in Palm Desert, to baptize the child. At first Kristen dismissed the idea, but as the surgery drew closer, she agreed. Just in case.

They called the Rev. Daniel Rondeau the night before Natalie’s operation.

Natalie’s only white dress was made for a 9-month-old baby, not a wee 3-month-old. And it was impossible to place on her body with the tangle of intravenous lines, the heart monitor and tube draining fluid away from her brain. Kristen simply put a white bonnet around Natalie’s head and tied a bow under her chin.

Rondeau used a tiny vial of holy water to bless the baby in her hospital room during the quick service.

It all seemed so out of place, so wrong. It reminded Andrew of old “M*A*S*H” episodes where the chaplains would give last rites to soldiers on their deathbeds. This shouldn’t happen to a baby. It especially shouldn’t happen to their baby.

As soon as the baptism ended, hospital staff wheeled Natalie into surgery. A nurse gave Kristen a pager, which would vibrate and light up with news throughout the surgery. She told the mother to give Natalie a kiss goodbye.

Kristen couldn’t do it. She couldn’t give a final kiss.

Instead, she watched the operating room doors swallow her child. She clutched the hospital pager with sweaty hands and she wept.

The surgery was long, dragging on for nearly five hours, and it was difficult for the surgeon and child. Doctors removed a tumor the size of an apricot from Natalie’s head, where it was wrapped around the brain. To avoid possible damage to sensitive parts, about 30 percent of the mass was left behind.

The pager went off. Kristen and Andrew could come see the baby.

Kristen barely recognized the child in the hospital room. Wires and IV lines slithered around Natalie’s body. A thick ventilator tube forced the baby’s tiny lips into a wide “O.” Her features were puffy and red from lying face down on the operating table. She was still, her only movement the blink of bloated eyelids over enormous blue eyes.

The tumor was tested. Kristen was calm as she waited four days for the results. Of course it would be benign, she thought.

Their young, suave neurosurgeon always had an air of perfection and authority about him. But on that day, he walked into the room with a blank face. His eyes welled with tears, though his words were matter of fact.

It’s called medulloblastoma, a solid, rapid-growing mass. The tumor is most common in children, though it’s rare for a baby. It’s not clear what causes it.

What’s clear was this: Natalie has cancer.

Three out of 10 children in her condition live past age 5.

Seven out of 10 kids don’t.

As the doctor’s words uncoiled with bad news into the hospital room, Kristen began to shake with anger and crumpled her water cup into a ball.

It was happening too fast, this drastic transition from healthy child to cancer patient.

Natalie didn’t deserve this.

Kristen didn’t either.

For nine months, she had done everything by the book. She ate healthy foods. She avoided caffeine and alcohol. She even held her breath every time she spritzed her hair with styling products to avoid inhaling any chemicals.

“I cannot believe this is happening to us,” she said to Andrew, with fury burning her face.

Andrew just shook his head with sadness and shock. A former Secret Service agent, he was a strong and stoic man, but he couldn’t stop himself from crying.

The surgeons needed to attack the part of the tumor that remained. It was like a worm inside a candy apple. Left alone, it would feed on her and grow.

The surgeon carefully maneuvered around the area where the brain stem meets the back of the brain, a part that is responsible for sensory perception and coordination. The cancer there was interwoven into the fibers of the brain, like a stitch through fabric. Though the surgeon removed some of the brain with the tumor, it was impossible to remove every bit of the mass.

A thin film of cancer remained inside her baby’s head. Because it was draped over a particularly delicate area of the brain, the surgeon had no choice but to leave it alone.

Later, in the recovery room, Kristen held her child for about two hours in a hospital recliner, listening to classical music on the radio. Kristen whispered softly to her child, pretending they were at the symphony.

Brutal days of waiting; wrenching decisions to make

Kristen knew that her baby had cancer and waited to speak with an oncologist at Loma Linda. For 10 long days she held her baby girl and watched the hands on the clock move.
All the while, Natalie shared a room in the cancer unit with a 4-year-old boy who loved the movie “101 Dalmatians.” He watched it incessantly.

There are only so many dalmatians a tired, frustrated woman can take. And so Kristen often imagined making the doggie DVD disappear.

When the oncologist came, the doctor was rushed and busy. Kristen had a head full of questions and still no answers.

She and Andrew had started researching other hospitals. They wanted the very best possible care for her child and were willing to go anywhere. By coincidence, St. Jude Children’s Research Hospital in Memphis, Tenn., was fresh in Kristen’s mind.

She remembered receiving a St. Jude catalog in the mail a few months earlier. On the cover was a photo of a child with cancer, an adorable 3-year-old boy with big puddles of brown eyes. At the time, Kristen thought she would be devastated if that ever happened to her own little boy, Carson.

St. Jude happens to have one of the largest programs in the country for childhood brain tumors, but the hospital carefully selects its patients. Children are not accepted into the facility unless they fit into current research trials.

Natalie was young, had a very rare form of cancer and hadn’t been treated anywhere else yet. So she was accepted.

Kristen spoke on the phone to Dr. Robert Sanders, the oncologist at St. Jude who would treat Natalie. Kristen got straight to the point: Was this worthwhile? Would they cure her or simply prolong the inevitable? No child Natalie’s age had ever survived this cancer, so what was the point?

She could always be the first, the oncologist said.

And that was that.

After the phone call, Kristen sat alone in the hospital cafeteria, her head hung low over her dinner plate. She took a deep breath and sobbed. All the anger, stress, sadness and heartache sank into her bones.

This was the right move for her baby. Kristen was sure of it. But she was ready for this to be over. She was ready to be a mother again. She was ready to move on with their lives, and the next phase was just beginning.

Chemotherapy at St. Jude began 11 days later on a hot, muggy summer morning. This was the season for sudden Memphis thunderstorms. The days flashed quickly between sun and rain.

For 24 hours, Natalie received a continuous infusion of florescent yellow drugs, followed by 48 hours of fluids to wash it all away again. The next week brought more drugs, then more fluids.

Between each round, Natalie’s white blood cell count had to drop to zero - basically no immune system - then build up again before attacking it with more chemo.

The rounds of chemotherapy came one after the other, all summer long.

The side effects of the treatment read like a horror novel: nausea, vomiting, loss of appetite, hearing loss, metallic taste in mouth, blood in urine, hair loss.

Even the routine things had taken on a frightening edge. Each time Kristen changed Natalie’s diapers or cleaned her, she had to wear latex gloves. The drugs made the child toxic.

But in the quiet moments, when everybody else was away, Kristen nuzzled her nose against Natalie’s neck, forehead and pudgy cheeks and soaked up the smell of her daughter’s skin.

The young mother cherished those moments when she could hold Natalie as close as possible.

The baby couldn’t nurse anymore, though, because the first brain surgery had stolen Natalie’s ability to suck. Instead, she had a feeding tube taped to her cheek that ran from her nostril to her stomach.

Each day, Kristen continued to pump her breast milk and feed it to Natalie through the tube. She liked to think there were special antibodies in the liquid that would make her baby well again. She couldn’t get inside Natalie’s head to fix the cancer, but at the very least she could sustain her with milk. She could still nourish her baby.

As each day passed, Natalie’s personality revealed itself, like a spring bud unfolding into a blossom. The cancer was easier to swallow when Natalie didn’t do much other than sleep and lay and sit. But now she was recognizing people, smiling, blowing raspberries, cuddling. She was becoming a person, and that was terrifying.

It was bad enough to lose Natalie. But to bond, then lose her, was far worse. Kristen struggled with what she should do - pray for a miracle? Or give up hope altogether?
The mother-daughter relationship was slipping away from her again.

‘Natalie’s body isn’t working. …She’s not going to get better.’

The entire family relocated to Memphis during Natalie’s treatment and lived together in an apartment provided by St. Jude. So while Kristen tended to her sick daughter, there also was an other child who required attention.

Carson still had to go to school, still had to have a third birthday party, still had to get tucked back into bed after nightmares. Even when nights were particularly long and sleepless, Carson would wake to an internal clock precisely at 6 a.m. and bellow, “The sun is out!” He often tugged on Kristen’s pants and begged, “Mommy, be with me.”

It was exhausting.

As the months of drugs wore on, Natalie weakened.

The chemotherapy had taken its toll on little Natalie. Her blue eyes became bloodshot, her eye lids grew puffy, she vomited frequently and wailed with cries jagged enough to pierce Kristen’s heart.

She had already lost hearing in her right ear during the first surgery. The chemo now caused some loss of hearing in her left. Kristen knew her daughter might never hear birds chirp or leaves blow in the wind.

There were few signs that she would ever get better.

Sometimes, when Kristen held the baby in her arms, she apologized. This was not the life she had pictured for her daughter. This was not the life she deserved.

By the end of September, the doctors ordered another MRI to see whether the cancer had backed down. Kristen wheeled Natalie in for her test, knowing the results would likely be unfavorable. But Kristen was calm.

A resolution. That’s all she wanted, one way or the other.

Dr. Sanders, the oncologist, was unusually sober-faced when he walked into Natalie’s hospital room the following day. Kristen sat with a tissue in one hand, Andrew’s hand in the other, emotionless, tearless and reminding herself that she would remain strong no matter the outcome.

The doctor explained the cancer wasn’t getting better. In fact, it was spreading.

“That’s it, right?” she said. “We’re done.”

The doctor nodded yes and stared at the floor.

Kristen felt the tension lift from her body, like sparrows flying off a telephone wire.

She had the answer she needed.

There was no point in staying longer. Further treatment was useless.

She and Andrew told Carson about the cancer over a breakfast platter at the International House of Pancakes. Knowing Natalie would die soon, they wanted to start preparing their son for it. They didn’t tell him everything, only what he needed to know at this point.

“Natalie’s body isn’t working anymore,” Kristen said. “She’s not going to get better.”

Kristen believes he understood what she was saying. His lower lip stuck out in a pout and he was very quiet for about 20 seconds. He laid his head on his mother’s leg and patted her gently.

That night, Kristen spent a few quiet moments in front of her computer and sent an update to her family and friends on her blog. She wrote, “Through this adventure, we have learned that the ‘not knowing’ part is the hardest part of the battle.

“We now know that Natalie most likely has two to three months of life left in her. It is a life that she needs to live surrounded by love, laughter and happiness.”

“Before we had decided to come to St. Jude for treatment, I asked Dr. Sanders if it was worth it for us to make the effort to come out here since no child Natalie’s age has ever survived this type of cancer. In his response he said, ‘Yes, because Natalie could always be the first one.’ Well, Natalie will not be the first one this time, but someday there will be a six-month-old baby who is the first to survive medulloblastoma, and that will be a happy day.”

The family packed up their gray station wagon and retreated to their home in Palm Desert for hospice care. The curtain would close in two to three months.

And then, back in Palm Desert, exhausted and sad, Kristen grind ed to a halt. She thought back to when she was pregnant, just a handful of months earlier. Natalie was inside of her, and already in side Natalie was a tumor.
As much as Kristen wanted to believe her mother’s milk could heal her sick baby girl, it was no match for this cancer.

Preparing for her daughter’s death, she began to feed Natalie powdered formula.