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Lodi family endures death, illness

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Posted: Friday, April 13, 2001 10:00 pm

Nine-year-old Brian Kaelber of Lodi emerged from the bathroom after vomiting and slumped down on the couch.

"Mom," he whispered. "I have a terrible headache."

His mother, Tammy Kaelber, wrung out a cold washcloth, and wiped his forehead and face while murmuring reassurances. His pale and clammy face did not go unseen. When he quickly fell asleep, Tammy unloaded the dishwasher while her heart pounded. Red flags stood at full attention in her weary mind, and tears came forth unexpectedly. Her thoughts quickly turned to Sarah, her young daughter.

It was always Sarah's sweet smile that pierced Tammy's soul to the marrow. Just over a year ago, her energetic 6-year-old had said those exact words. She had fallen off a balance beam during a gymnastics class, and their pediatrician had assured Tammy and her husband, Chuck Kaelber, that their daughter's continual physical complaints would pass. Within a few weeks the headaches and nausea came in waves, yet each visit and phone call to the doctor was fruitless.

Tammy's motherly instincts along with her nursing school studies on the neurological system flashed warnings. She insisted upon a brain CAT scan knowing they might have to pay for it if their insurance company refused. A large mass in Sarah's brain was found, and they were referred to the University of California, San Francisco Medical Center for surgery in a week.

However, within one to two days, Sarah's pain escalated and decisions were made to get her to the San Francisco hospital immediately. During the urgent two-hour car trip, Sarah grasped her head in her hands while screaming and groaning, which caused her parents to feel helpless and incredibly fearful. After the Kaelbers arrived, the medical staff took over and reassured them while starting intravenous medications to decrease the swelling on their daughter's brain. Yet Sarah's condition deteriorated, and she was rushed to the operating room.

Because the waiting room was filled with other families with children also undergoing surgery, Chuck and Tammy were hastily led to an unused janitor's closet where they sat for over five hours. Midway through, they were reassured by a phone call from the operating room that Sarah was fine, and the tumor had been removed successfully.

Not wanting to notify their parents and friends until the surgery was over, they held hands in this cramped room, and soon after heard the first of many urgent overhead pages for Respiratory Therapy, Pharmacy, and then a dreaded "Code Blue." Staff members wearing multi-colored scrubs ran past them in alarming numbers. Could all this be for Sarah - or one of the other children in surgery? Alone, they sat, paced and cried out in each others arms. They prayed like never before.

The surgeon finally approached, and his downcast head and sagging shoulders sent ice into their hearts. Yes, it had been Sarah whose little heart had stopped beating, but she was now in the intensive care unit, and they could visit. The tangle of confusing tubes, a ventilator, and her bloated body made it hard to recognize her. Their bewilderment mingled with complete helplessness.

Tammy and Chuck tenderly held Sarah's limp hand, murmured sweet reassurances and told her how much they loved her. The staff gave them some brief explanations, but very little hope. They returned to the closet amidst brooms and mops to wait it out. After a few hours a staff member joined them to ask about donating Sarah's organs for other needy children.

At that point, Chuck recalled with clenched fists "I told them to GET OUT." An unfortunate breakdown in communication between the pediatric ICU staff and the family had occurred, and they had not been informed that their only daughter, Sarah, had, in fact, died just moments before.

The world-renowned pediatric neurosurgeon tearfully apologized for "losing her." They slumped in their seats, too stunned to speak. They had been told that he wrote medical textbooks and was the head of pediatric neurosurgery. Prior to her case, he had reassured them that this was a simple and routine procedure with a very high success rate. Now he whispered hoarsely, "Do you want to see her?" They never did understand what exactly went wrong, nor received a bill from this surgeon.

Back home, their pediatrician quit her practice and left town promptly without notifying them.

Numb with sorrow, Tammy, Chuck, and their three sons sat stonefaced at Sarah's funeral a few days later surrounded by hundreds of schoolmates, relatives and friends. All gaped in stunned silence at the casket adorned with fragrant pink roses. There were no answers … only a myriad of questions and many regrets.

Grief assaulted this family daily as their numbness thawed out and became a stabbing pain.

The agony accumulated a few weeks later while Chuck was driving the huge Pacific Gas and Electric Co. truck to a routine service call.

"I felt I couldn't handle an ounce more of pain and had to pull over to the side of the road. I cried out to God as I hung my head over the steering wheel while sobbing uncontrollably," he recalled. "Quickly, the agony evaporated, and I had a sense of comfort that no words, or person had been able to give me."

Continuing down the street, he drove past Century Assembly of God, when he felt a small pilot light flicker. Was this just emotion?

Tammy had been raised in a Baptist faith, and believed strongly in a loving God. Prior to Sarah's death, she had wanted her family to attend church, but their busy schedules didn't allow this desire to become a reality. When Chuck broached the subject of attending the church he had seen earlier, she readily agreed and shared, "I don't understand how God could have taken Sarah from us, but let's go check this place out."

They felt the service and people were nice, and noted in the church bulletin that there was a group for parents who came together to learn how to build strong families. They attended this "HomeBuilders" Sunday school class, and immensely enjoyed the one-time class filled with fresh-flavored coffees, "early bird" prizes, date night drawings and lots of laughter.

A death in Tammy's family prompted her to travel to ldaho with Brian for the funeral. His headaches resurfaced, yet Tylenol given every four hours would make them fade away. One afternoon, he streaked past her and she heard deep wretching sounds in the bathroom. She cooed over him, and when he gazed up she saw unequal pupils. Her panic percolated to a boil. She immediately phoned Chuck. He tried to reassure her but terror flooded his own heart. Was a new nightmare unfolding? They both tried to dismiss this rising fear with logic: the odds were astronomically against the exact story unfolding with her baseball-pitching son.

But it did.

Upon flying home, they worked through a church member to secure an immediate appointment with an excellent family practice doctor in Lodi. A prayer chain linked by phone calls and e-mails went like wildfire throughout the church and community, as the earnest petitions of many in Lodi were heaven sent. The quiet-spoken doctor examined Brian and ordered a CAT scan and MRI.

The tests were completed just as Brian's speech started slurring.

Their church's pastor and his wife accompanied this terrified couple when the radiologist delivered the grim news: Brian's tumor was identical in size and location as his sister's. Tammy and Chuck clutched hands, as tears flowed freely, and bewilderment surrounded all like a fog in the darkened X-ray room. Hope was not encouraged by any … only the urging to get to UCSF quickly.

The same surgeon who had operated on Sarah, upon hearing the MRI results, immediately greeted Chuck, Tammy and Brian personally. Stating he had never seen or heard of any case like this, he committed to have Brian on the operating room table for delicate brain surgery as the first case the next morning. A blanket of prayer flamed across the Bay Area, and over 40 friends, family members and HomeBuilders literally took over the UCSF pediatric waiting room. Frequent updates and visits by liaison nurses between the operating and waiting rooms kept everyone well-informed. Five hours later the surgeon was surrounded by all as he tearfully told everyone the great news: "We caught it in time, and you're going to have a normal 9-year-old boy!"

Cheers, laughter and sheer relief leapt forth from all as many joined this compassionate surgeon with tears of joy.

Sixteen months later, Brian is, in fact, fine.

What transpired in that long year-plus period was staggering. The pathologist's report showed the tumor was a very aggressive cancer and if a single cell remained anywhere in Brian's body it could replicate quickly and in a very deadly manner. Very aggressive and hard-hitting treatment was the only option even though the tumor had been removed.

During that time, Brian underwent five surgeries, and a weight loss from 72 to 53 pounds. Over 30 admissions led to over 110 days in the hospital in San Francisco, away from friends and family. Brian endured 35 radiation treatments over seven weeks, and lost all his gorgeous brown hair. Next, he completed six-week cycles of chemotherapy, and this was done eight times in a row. Temperature spikes and neutropenia (low white blood cell counts), propelled the family in the middle of the night to the emergency room on multiple occasions. Both parents became proficient at reinserting his nasal feeding tube amidst his gagging and tears. Brian's trademark Miami Dolphins ball cap helped hide this tube, his baldness, and pale skeletal face. He asked that no one take his photograph.

Brian now plants flowers in the elementary school garden next to the sundial dedicated to his sister Sarah. His smile is strong as he hugs Tammy on her birthday and says the best thing about her is well … just everything, and that he loves his mom.

As this battle-weary couple reflect on the past two years they quickly agree on one factor in Brian's success. The biggest difference is that God is part of their family, they say, and other Christians have absolutely been there for them. Both have grappled with how Sarah and Brian's outcomes have ended differently, but know that in both cases they had to cling together and not blame one another.

Tammy and Brian traveled by Bay Area Rapid Transit train, bus, car, and ambulance to the hospitals, and she knew the closest route for emergency bathroom and McDonald's stops. Chuck maintained a full-time job with Pacific Gas and Electric, and held down the fort at home overseeing two teen-age boys through countless sports leagues, homework, and keeping the house halfway presentable! The local school district worked with Tammy to enable her to home school Brian during his fifth grade of school. The Make-A-Wish Foundation donated a top-notch computer to the family to help Brian stay on course with his erratic schedule.

They talk of the worst day and, surprisingly, erupt into laughter while elbowing each other. Brian had already lost 15 pounds and Chuck had been urging him to eat while he and Tammy drove him home from a special trip to Taco Bell. Nauseated, Brian shook his head no. Tammy said to just drop it, but Chuck became frustrated and told his son he was going to eat that burrito or else.

"That did it," Tammy recalled slightly embarrassed. She told her husband to pull the van over and get out. He did, and she hopped over to the driver's side and took off, leaving him stranded 3 miles from home in the pouring rain. Worse yet, halfway home she looked down on the floor and saw his wallet lying there, and then glancing up she could see Brian in the rear-view mirror weeping. Committed yet furious, she made it home only to have her 18-year old son ask where his dad was. Brian quickly answered "He's on Lodi Avenue by Taco Bell where mom left him." They all laughed, and Chuck soon arrived soaked, but well aware that he never wanted to cross that line again.

Soon after they told a social worker about "new low," she referred them to a registered dietician. She started Brian on a calorie-dense milkshake, which helped him slowly gain weight.

Looking back, they are grateful that this crisis over, but as Tammy states, "We had no choice … this is our son; we just went day to day, one treatment at a time. When other moms say they could never endure the hardships we've gone through, I get slightly irritated because I know they would in a heartbeat. I've just been a mom, that's all."

Today Brian is in sixth grade, and almost caught up with his classwork. His silver scooter is propped up in the hallway next to his backpack. Penny, the adorable beagle he received during chemotherapy as a puppy leaps up waist-high in adoration as Brian runs in the house. He dashes past a beautiful photo of Sarah and grabs his baseball glove. Tammy calls out, "Hey, shut that door," and he whizzes out while closing it with his foot.

His laughter blends in with the neighborhood boys as baseballs smack into mitts. lnside their home, a sudden silence envelops the kitchen as Chuck slips up behind Tammy. As he puts strong capable arms around her he whispers "Just look at that kid go. Isn't he amazing?"

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