The Wake

He stands five feet, five inches tall. He weighs just over 100 pounds. His blonde hair is slowly growing back, covering his once-bald head. Clothes that used to fit him now loosely hang on his frame. His eyes become livelier, less sunken with each passing day. He can’t bench press 300 pounds, but he’s one of the toughest guys in Minnesota. He’s thrown down with Death and knocked it out. He’s beaten cancer before. He’s trying to make cancer tap out again. This is 15-year-old Andrew Kippley. He’s tougher than cancer.

Andrew was first diagnosed with neuroblastoma when he was 2 years old. Neuroblastoma is a type of cancerous tumor that grows out of the body’s nerve tissues, usually from the adrenal glands. There are around 650 new cases reported in the U.S. alone each year, and while neuroblastoma cases account for only 5 percent of cancer diagnosed in children, it is the most common cancer found in infants and it is responsible for around 15 percent of childhood cancer-related deaths. Andrew
did the improbable as a toddler, beating an advanced case of the disease when the survival rate for children in his situation dramatically decreases after 18 months of age. He survived after several months of chemotherapy. Unfortunately, he was diagnosed with neuroblastoma again last May.

“It sucked,” Andrew said when asked what he felt when he was told he had cancer again. There wasn’t anything more to it than that. No tears, no existential questions, nothing of the sort.

“They just came in and said that ‘he’s got a mass in his stomach and that’s why he’s having all his problems,’ and I said, ‘that sucks,’” Andrew said. “We joked about it all the way home.”

Andrew’s second battle began when he started having troubles going to the bathroom. After a month of abnormal bathroom breaks, the Kippley family went to the doctors at Children’s Hospital in St. Paul to see what was wrong. It took several scans and appointments before an oncologist found the tumor. Upon informing the family, the doctors made Andrew submit urine, testing it for any hormones the tumor may secrete, as neuroblastoma is one of the few cancers that gives off hormones.

“Relapses can occur many years after apparent cure,” Dr. John Maris said. Maris is one of the top neuroblastoma specialists in the world and practices at Children’s Hospital in Philadelphia. He is one of Andrew’s doctors and is currently directing his treatment. “This is likely due to rare cancer cells sitting quiescent for some time. Why they begin to re-grow and when is unknown.”

Andrew first went into surgery shortly after he was diagnosed, on May 14. It didn’t bode well. Doctors labeled Andrew’s tumor as Stage 4 neuroblastoma. They only took out about 20 percent of the tumor because it attached itself to his bladder, encasing both his ureters, which are ducts that move urine from the kidneys to the bladder. The tumor connected itself to both his kidneys and his colon as well. Worse, it bled on touch, before the doctors made any incision. The doctors were unable to put stents into his kidneys to help him relieve himself, but they were able to put in a port, a small device that among other things can help put chemotherapy drugs into the body. The port is usually connected to a vein by a catheter. It has a septum to store and move injected chemicals during treatment.

Facing such a dangerous tumor, doctors decided to start chemotherapy sessions for Andrew to see if the tumor would shrink away from his internal organs and become operable. By this time, Andrew left school towards the end of his eighth grade year so he could focus on his treatment. Because of his age, and the amount of time he spent in relapse between his first and second bout with cancer, Andrew became a unique medical case.

Maris said that “while rare, neuroblastoma in teenagers and young adults is welldescribed… unfortunately, relapses occur in about half of all cases. His was very late, and this is the unusual aspect [of Andrew’s case].”

It was so unusual that Andrew’s doctor in St. Paul began asking the top specialists around the country for advice on how to treat Andrew, according to Andrew’s mother Amber. The responses each specialist gave varied from giving Andrew new experimental treatments to just monitoring his progress.
Neuroblastoma is often unpredictable and there are documented cases where tumors have simply vanished on their own. Doctors have yet to find the cause behind neuroblastoma’s chaotic nature.

Andrew began the first of his two chemotherapy rounds in the last days of May. For most people, chemotherapy is a terrible experience. In some ways it was worse for Andrew as he has a higher-than-average resistance to drugs and medication. When he had his epidural catheter removed after his
first surgery, doctors gave Andrew pain medication that proved to be ineffective. It took seven hours before doctors found pain meds that worked. Andrew experienced the same difficulties when it came to chemotherapy.

“They kind of mixed and matched chemos and gave him a double dose,” Andrew’s father Don said. “One of the chemos that he had taken the first time gave him hearing loss, so they took that one out of the equation.”

According to Andrew, chemotherapy is long and boring. Andrew was admitted into the hospital and put into a room where he waited for a while. Doctors put Andrew on an IV, through the port in his chest. He waited more while doctors prepared the radioactive chemicals they were going to use.

“[The chemo] is just like normal looking liquid in a bag that goes into an IV,” Andrew said. “You’d think they’d be weird looking but it’s not.”

Andrew spent four days in the hospital the first time, mainly just waiting for the therapy to be done. He described the therapy as “nauseating,” especially since he wasn’t able to eat regular food. Instead, he ate tons of Skittles and drank a lot of Mountain Dew Livewire. Andrew still lost weight because of the chemotherapy. Another side effect of the chemo was a fever Andrew would develop while undergoing treatment. Doctors had to give him Tylenol over other medicine like Ibuprofin because Tylenol wouldn’t react with the drugs pumped into Andrew’s body. For reasons doctors couldn’t immediately explain, Andrew’s legs ballooned when he was undergoing chemotherapy. Doctors later found out this problem stemmed from blood clots in Andrew’s legs.

One of the worst effects of the chemo was the failure of one of Andrew’s kidneys. It stopped retracting, and as Andrew had only one good kidney at that point, he had “over twice the amount of what you should have in your bladder.” Doctors removed a liter of urine before they put in a catheter, removing another liter afterwards.

“They said the tumor was so big, it was blocking every which way,” Don said. “They ended up doing a lot of smaller surgeries to put a lot of stents in. That’s when he stayed in the hospital the longest.”

Andrew went through another round of chemotherapy three weeks after he was released from the hospital. In between his chemo treatments and other visits to the hospital, Andrew managed to find some enjoyment in his summer. Whether it was attending benefits to raise money for his treatment or
walking late at night around his neighborhood, Andrew kept busy. He also spent time with the Andrew Kippley Krew, a group of eighth-grade girls comprised of his friends who dedicated their entire summer to raise money for Andrew.

“We just kind of came up with an idea to raise money for Andrew,” said Abbey Nelson, one of the founding members of the Kippley Krew and one of Andrew’s closest friends. “It was initially going to be a surprise for him, but then a lot of people found out. And then we let Andrew know, and then obviously he became part of the group.”

Andrew soon learned he didn’t have much to be happy about. His tumor had actually grown during the chemotherapy process. It expanded two centimeters towards his stomach, as it had nowhere else to invade. The cancer by this time was pushing his organs out of position, making the tumor more life threatening than ever before. With Andrew’s survival on the line, doctors decided they must try and remove the tumor through surgery again. Whereas before they thought the tumor was too risky to operate on, this time there was no other choice.

“It was not an option,” Andrew said. “It was a last resort, it was not an option.”

The Kippleys had to choose which doctor would perform surgery on Andrew. While there was a doctor in New York who only did surgery on neuroblastoma patients, the doctor who first performed surgery on Andrew when he was two was available as well. The Kippleys felt more comfortable with the doctor who had previously seen Andrew and after meeting with him decided to go ahead with the surgery.

Andrew went into surgery on July 29, risking his life to be free of his cancer.

Read Part 2 of Tougher Than Cancer to find out more on Andrew Kippley’s fight with Cancer