Voices of pediatric cancer: treatment

After you learn that your child has cancer, time seems to both speed up and stand still. You deal with months of chemotherapy, then years of follow-up, praying that the cancer doesn’t return. Every day is dreaded and cherished.

“Those days really run together,” said Kerry Palumbo of Mahoning Township, whose daughter Cara was diagnosed and treated for a brain tumor. “Time seemed to take on a surreal quality. It seemed to go so fast, but at the same time it seemed to take forever.”

Cara was 11 when she was diagnosed with medulloblastoma, a stage 4 malignant brain tumor. She was diagnosed at Children’s Hospital of Pennsylvania on Sept. 30, 2012. She underwent surgery to remove the tumor on her brain stem the next day.

Doctors reassured Palumbo that the brain heals fairly quickly, even from major surgery.

“We were told all of these positive things and it really lifted our spirits,” she said. “As far as the doctor was concerned, for what he was doing, she would be healed enough in two weeks to do physical activity. The reality is that when you cut into brain tissue, it’s not that simple.”

That reality became clear before the surgery, when a nurse suggested they take a few videos of Cara.

“She said, you might want to get a videotape of her saying ‘I love you.’ Because you might never hear it again,” Palumbo said. “No one really prepares you for the reality of what is possible until the very last minute.”

The Palumbos learned that brain surgery can lead to a patient becoming deaf, blind, mute or unable to walk.

“You have to make all of these major, life-changing decisions, and no one gives you time to think. There’s no time to say anything except yes or no, and you can’t really say no,” she said.

Surgery lasted nearly eight hours, after which the Palumbos were informed that the surgeons had removed 100 percent of the tumor. Cara began talking immediately after coming out of sedation, and attempted to walk to the bathroom just a few hours later. But her balance was limited, she had double vision, and she had lost some control of the right side of her body.

A lumbar puncture done the next day revealed that Cara had no cancer cells in her spinal fluid. While this was great news, it was only the start of her journey.

Oncologists now know that Cara’s specific type of cancer responds better to radiation than chemotherapy. In 2012, studying the genetic makeup of tumors to personalize treatment was in its infancy and hadn’t yet impacted treatment plans for pediatric cancer patients. CHOP honored Palumbo’s request to have the tumor genetically analyzed, but they continued with standard treatment for medulloblastoma, which included 30 proton and photon radiation treatments aimed at the head, neck and spine, ideally done every day. Additional chemotherapy was done concurrently with radiation.

While having the tumor tested didn’t change Cara’s treatment plans, it did assure doctors that her survival rate was fairly high among various subtypes of brain tumors. It also revealed that Cara has a chromosomal abnormality that makes her predisposed to certain types of cancer, many of which have appeared in her family members.

Cara’s radiation treatments caused one problem after another. She was allergic to the plastic used for the mask required for treatment. After the first day of treatment her eyes were swollen shut and her lips twice their normal size. She also had an infection from the swelling and recurring exposure to the mask.

Half of the radiation treatments would be done face-down, which required sedation. This meant no food after midnight, and because treatments were often delayed for hours in the morning, and she would sleep the sedation off in the afternoon, the family had about four hours to convince her to eat a day’s worth of calories. Her weight dropped from 95 pounds to 72 pounds.

The radiation equipment was also temperamental, which sometimes meant Cara would fast for half the day only to be told she wouldn’t be receiving treatment that day. The equipment was also turned off when the oncology building was flooded by Hurricane Sandy.

“Once they start (treatment) they can’t stop until it’s done,” Palumbo said. “They can miss a day or two, but no more. We were so scared she would not meet her treatment protocol.”

Palumbo also became frustrated by nutritionists’ suggestions to let cancer patients eat whatever they want, even if that meant candy bars and pizza every day.

“We don’t look at the holistic side of things in this country,” she said. “It’s known that sugar fuels cancer cells. And yet they would tell us, let the kids eat whatever they are willing to eat.”

Palumbo looked forward to having access to a kitchen again, which at least allowed her to prepare healthy, higher calorie foods she knew her daughter enjoyed.

She also used the GrubHub app on her phone to search for healthier food that could be delivered in Philadelphia.

“It was this constant battle to get her to eat,” due to the time limitations Cara faced while undergoing radiation, said Palumbo. “She was a trooper. She would do her best to do what she could, when she could.”

The thought of food as medicine became a source of irony for Palumbo.

“You do everything right. I think it’s ironic because I buy organic apples because I don’t want my daughter to be exposed to pesticides. Then two years later I’m pumping her full of toxic chemicals, and it’s the only option that’s available.”

Cara was discharged from CHOP on Thanksgiving Day, with the stipulation that the family remain in Philadelphia. (With a daily treatment plan, missing radiation due to poor weather conditions wasn’t an option.) They moved into the Marriott, just four miles from the hospital for the rest of Cara’s outpatient treatments and physical therapy.

“She would be scheduled in the morning for radiation, and then when her radiation was finished she would have physical therapy at CHOP as well,” said Palumbo.

She could barely stand at the beginning of therapy, but by January of 2014 she was able to move around her classroom and only needed a wheelchair in crowded places like shopping malls and school hallways.

After being allowed to return home, Cara and her family continued to drive to CHOP every Tuesday for 58 additional weeks of chemotherapy. The type of chemotherapy she was given can cause hearing damage and nerve pain in the extremities, both of which Cara experienced to some degree.

“I couldn’t even hug her without causing her pain,” said Palumbo.

Cara also needed weekly blood transfusions starting after her sixth week of chemotherapy.

“You take everything minute by minute, and sometimes that’s even too much. Then you take it second by second.”

A long journey

When 2-year-old Sam was diagnosed with leukemia, his mother Pauline Grady of Walnutport had mixed emotions on learning that it was one of the most treatable types of cancer.

“When I heard cancer and my child was 2 years old, I immediately thought he was going to die. He’s going to be the 5 percent that doesn’t live. That’s what any mother or father thinks,” she said.

Sam’s diagnosis, Pre-B acute lymphoblastic leukemia standard risk, meant a long, arduous treatment. Protocol requires three and a half years of weekly chemotherapy for young boys.

“That’s the standard protocol. There’s no getting around it. It’s an extremely aggressive type of cancer, and if not treated properly it will return,” she said. “Nearly all other childhood cancers, the treatment isn’t nearly that long. As long as there is no evidence of the disease, they’ll stop treatment — but not leukemia.”

Sam achieved remission within 29 days of diagnosis and beginning treatment. But to reduce the chances of remission, the family would endure an additional three years and five months of weekly chemotherapy.

“It’s heart-wrenching to know that we’ve killed all the cancer, but we still have to give him this poison for three and a quarter more years,” said Grady.

But she also found the lengthy treatment comforting.

“It sort of becomes a safety net. We see so many kids relapse with other types of cancer, even though they had no evidence of disease. It’s very bizarre. A lot of emotions go into it,” she said.

“There’s no cancer. You feel bad pumping this poison into him, but it’s keeping the cancer away. It really plays with your emotions.”

Cancer treatments have taken up a majority of Sam’s young life.

“When I tell people that he’s been in cancer treatment for three and half years, they ask how old he is. He’s 6 now. It’s mind-blowing,” she said.

“But we’re on the other side. His numbers are good. Starting this week, we go to see the oncologist every two months instead of every month. That’s a big milestone.”