Voices of pediatric cancer DIAGNOSIS

September is Pediatric Cancer Awareness Month. To help spread the word throughout the month we will share the stories of several families affected by this insidious disease through our series: The voices of pediatric cancer. In their words, these families will speak about what it feels like to learn your child has cancer, to watch them suffer through treatment, the heartbreak of loss and the promise of hope.

"I don't feel well."

If you're a parent, you've heard that sentence more times than you care to remember.

It might be a cold, or maybe there's a bug going around. If it's something serious, such as a high fever or vomiting, or your child just doesn't seem to be getting any better, you'll pay a visit to the doctor.

"You don't expect to leave your house and not come home again for two and a half months," says Kerry Palumbo of Mahoning Township.

Palumbo and her family were at her son's football game. She asked her daughter, Cara, 11, how her day had gone.

"When she said she had a headache, I thought nothing of it. When an hour later it hadn't gone away, I thought she might be getting sick. By the next morning she was throwing up and I called off of work, certain it was the stomach flu. She felt better by dinner and even ate with the family."

Cara went back to school the next day, Friday, but by Saturday morning, the headache was back. The pain was so bad, she was crying. The vomiting had also returned.

Palumbo had a feeling something wasn't right.

After Cara finally fell asleep, she went online and searched "headache, vomiting, no fever." The first thing that popped up was brain tumor.

Palumbo wanted to believe it was a migraine or any of the other items the search revealed. Cara was strong and healthy and had no other symptoms.

When Cara began vomiting again early Sunday morning, Palumbo helped her get dressed and took her to the emergency room.

"I walked out of my old life wearing PJs, a fleece jacket and carrying my wallet."

The doctor at Blue Mountain Health System's Gnaden Huetten campus recognized that something was out of the ordinary and ordered a CT scan. The word cancer or tumor was never used, but he did ask for permission to transfer Cara to Lehigh Valley Hospital for more tests, saying there was an anomaly on her scan and that she needed an MRI to determine what it was.

"As soon as he said those words, my brain, my heart, my anxiety went into overdrive," says Palumbo.

It turned out that the pediatric neurologist at Lehigh Valley was at a conference and since the doctor believed Cara needed to be seen right away, she was sent to Children's Hospital of Pennsylvania.

"We waited for an ambulance and started making phone calls. There is this sense of unreality when you are in this type of situation," says Palumbo. "Things take on a dreamlike quality and you keep trying to make sense of what people are saying and doing, but your brain can't connect.

"You keep telling yourself that things will be OK. That someone will come with the news that there has been a mistake ... that there is nothing seriously wrong."

At Children's Hospital of Pennsylvania, they were taken to the Pediatric Intensive Care Unit and an MRI was ordered.

"Cara was admitted at 1 p.m. on Sept. 30 (2012). She would not walk through our front door again until Dec. 6," says Palumbo.

"We knew nothing about pediatric cancers on Sept. 30. Of course we were familiar with the children on the St. Jude's commercials or in the American Cancer Society literature. They were smiling, adorable, bald children who tugged at your heartstrings and your wallet. The reality is much different."

Palumbo says that the pediatric intensive care unit is a quiet place.

"There are beeping machines and swishing doors and carts, but very little noise. Parents huddle together, quietly sobbing, whispering to doctors and nurses outside of closed doors. Even the consultation rooms are soundproofed. How do I know? My screams and sobs were not heard by my family only a few rooms away."

She says when she and her husband, Rob, were ushered into that consultation room, they were intimately familiar with what cancer does to a body, having lost two uncles in the previous year. Her mother had also battled breast cancer and Palumbo cervical cancer, seven years earlier.

"Let me tell you, hearing you have cancer is nothing compared to hearing your 11-year-old daughter has cancer.

Cara was diagnosed with medulloblastoma, a stage 4 malignant brain tumor.

"I remember hearing the doctor say 'Your daughter has a tumor on her brain stem and we will be scheduling her for surgery tomorrow.' I don't remember who hit the floor first, me or my tough steelworker husband. I remember we clung to each other and helped each other off the ground," she says.

"Before it happened to me, I had always viewed that representation of grief on TV as overly dramatic. I remember the sound that came out of my husband's throat; an agonized half-moan, half-scream that was joined by my high-pitched keening.

"The doctor let us have a few minutes to grieve. She knew better than we did just what this meant for our beautiful, blue-eyed girl."

'Garden variety' cancer

Sam Grady was only 2 when he was diagnosed with leukemia.

"How did we know? We didn't," says his mother, Pauline Grady of Walnutport.

"He had been sick on and off for three or four weeks with belly pain. Then we noticed the bruising, which I chalked up to him being a boy. Then he started vomiting and having fevers and generally not feeling well. We had him at the pediatrician a few times that week."

Grady and her husband, Rich, were getting ready for a family vacation and Sam was still not feeling well.

"He woke up on July 1 crying and screaming that his belly hurt. My husband said to take him to the emergency room. While we were there, they did blood work and an ultrasound on his abdomen. In that short amount of time, he got sicker and sicker in front of my eyes," says Grady.

"Within two hours, two ER doctors came into the room, closed the door behind them, and said the results of the blood work showed that he had leukemia. They didn't know what kind, but it was definitely leukemia."

In addition to the belly pain, Sam's liver and spleen were enlarged. Within the hour the Gradys met with the pediatric oncologist and Sam was admitted to the pediatric floor at Lehigh Valley.

"When they first told me, I literally fell to my knees," says Grady. "I kept telling the doctor she was lying. I asked if she was joking. I immediately went into this mama bear survival mode. I was yelling at everybody. The chaplain had to come in to calm me down. I was yelling at the staff to get my pediatrician on the phone. After that, I was just in a fog."

Sam had a port put in the next day, and started chemotherapy immediately.

"Sam was diagnosed with pre-B acute lymphoblastic leukemia standard risk - your 'garden variety' cancer," says Grady, hooking her fingers to form quotes. "One of the things the doctor said is he had the 'good' type of cancer; the most treatable. In my world, and in any parent's world, there is no good cancer, no matter how treatable or curable it is."

Tragedy strikes twice

Lora Krum vividly remembers the day her son got sick. She, her husband, Dave, and sons Dylan, 14, and Gavin, 12, went to New York City to celebrate Dave's 50th birthday. On the way home, Dylan said he had a sore throat. By Monday, he had a fever. The doctor put him on antibiotics, and it was treated like a typical infection.

When he didn't get better, the doctor gave him different antibiotics, but he continued to get worse.

He wasn't drinking or eating, the fevers were still high and he was getting lethargic. When he went back to the doctor the third time, the doctor advised them to take him to Lehigh Valley, where he was admitted.

"We thought it was pneumonia or dehydration and he'd be back on his feet soon," says Krum.

"They were talking about a biopsy the next day on the lymph nodes in his neck. Upon exam and other things, they saw things we wouldn't have noticed. We thought they were just being super safe, so we'd know it's not something to worry about. Even the surgeon who did the biopsy said things looked OK on sight," says Krum.

The next day, while Dave was on his way down to the hospital with Gavin, the doctors came in, sat down and told Krum and Dylan that he had pediatric follicular lymphoma, which is very rare.

"It was utter shock just hearing the word, and they knew that. They know as soon as they give you that label, you shut down. I looked at Dylan to see what he was thinking. As soon as they left, Dylan started to cry. My first reaction was to jump out of my chair and jump into bed with him and try to convince him that everything was going to be OK. His first question was 'Will I ever go home?'"

When Dave and Gavin arrived, the doctors came back and explained it all again, then told them that they would be doing a scope of Dylan's lungs in the morning to see how much of the disease was in his lungs. Then they moved him to the PICU.

The next few hours were difficult. Someone came to pick up Gavin. When Dylan couldn't relax, the nurses gave him something to help him sleep.

"As soon as he fell asleep, I left the room and just broke down. I remember Dave and I walking the halls of Lehigh Valley Hospital until 2 or 3 in the morning. We walked around in shock. You just convince yourself your going to get through it."

When they brought Dylan back to his room after his procedure, he was on a ventilator. The Krums were shocked.

He was on the ventilator for two weeks. A PICC line was inserted and chemo was started while he was in a medically induced coma.

Eventually his breathing improved and he was removed from the ventilator and moved to the pediatric oncology floor, but after 10 days, he was back in the PICU. A day later, he was back on the ventilator.

On June 22, still on a ventilator, Dylan turned 15 in the intensive care unit at Lehigh Valley Hospital.

On July 15, just 56 days after he was diagnosed with pediatric cancer, he earned his wings.

The Krums were devastated.

In the fall, instead of going back to her job as a music teacher in the Northern Lehigh School District, Krum took a sabbatical so she would have more time with Gavin, and give herself time to try and recover.

As for Gavin, she says he was a trooper.

"He was very good about remembering his brother and talking about him. The three of us, we tried to find our way through it as much as we could everyday."

Gavin finished sixth grade and partway through seventh grade, the Krums decided they were strong enough to plan a vacation the next summer. They went to California, Hawaii, then to Arizona to see the Grand Canyon. When they returned in mid-August, Krum got ready to go back to work.

"One morning, it was still August, Gavin came down the steps and he had a huge lump on his neck that seemed to pop out overnight," Krum recalls. "Of course we tried to make it be anything else."

The lump appeared on a Saturday. On Monday, they took him to see an ear, nose and throat doctor, who ordered blood work.

"He seemed to be feeling fine, other than this huge thing on his neck, which seemed to be getting bigger."

Although the ENT scheduled a biopsy, Krum's instincts were telling her to call the oncologist.

"I called on a Friday, they had us come in on a Monday and scheduled a biopsy for Sept. 25. By the time he was being wheeled back up from recovery, the oncologist was standing at the door ready to tell us that he had ALL, acute lymphoblastic leukemia.

"To get hit the second time, I don't even know how to put it into words. When it happened the first time, we thought it was the worst thing that could happen, and then when you're hit with the worst thing a second time, the shock is just overwhelming. Shock and adrenaline was what was keeping us going."

Not only were the Krums in shock, they were in the same place where their older son had died two years earlier. The memories were too powerful, not just for Lora and Dave, but for Gavin. They didn't want him in the position of being compared to Dylan in that way.

"And of course we were hoping for a different outcome," she says.

The Krums decided to transfer him to Children's Hospital at Hershey.

Although it was difficult for Gavin to submit to the chemo at first, once he did, his tumor responded quickly, and he seemed to be doing well. He was even able to come home, with the expectation that he would return to Hershey for treatment on an outpatient basis.

He came home on Saturday, Oct. 13, and had a great night, doing the things he loved, eating his favorite foods, and even enjoyed sleeping in his own bed. On Sunday, however, his condition began to deteriorate rapidly. He was taken to Gnaden Huetten and then flown back to Hershey.

A few weeks later, just 63 days after he was diagnosed with leukemia, Gavin joined his brother.

Read more about these special warriors and their fights next Friday when our series for Pediatric Cancer Awareness Month continues.