The parents of 4-year-old Drew Koenig of Townsend and 3-year-old Olivia Calbazana of Middletown didn’t know each other four months ago, but now they keep in contact to compare notes and root for each other as they fight the battle of their lives.
Drew started suffering from headaches and fatigue last spring, but it wasn’t something his parents thought they should worry about, at first.
Then one of his eyes started to turn in and he occasionally stumbled when he walked.
His mother, Catherine, asked doctors if Drew had a brain tumor and was told “absolutely not.” But her intuition told her otherwise. She then took him to Halpern Eye Associates in Middletown, where an opthamologist found the swollen optic nerve behind his eye.
“My heart sank because I knew right away it could not be good,” Catherine said.
Drew was taken to a neurologist, who sent him to A.I. duPont Hospital for Children, where he was diagnosed with medulloblastoma, a malignant brain tumor in the cerebellum, on Nov. 5, 2008.
Medulloblastoma.org states that the cancer is the most common brain tumor found in children. While it does affect adults, more than 80 percent of those diagnosed with medulloblastoma are 15 and younger.
Drew underwent four hours of surgery and developed devastating side effects three days later. Cerebral mutism caused loss of speech and muscle control on his right side.
Just a few days after his surgery and just three miles from his home, Olivia came down with a cold that grew worse as the month went on. She developed congestion, vomiting, fatigue and irritability, and was diagnosed with ear and upper respiratory infections. She was sent home from a doctor’s visit with antibiotics.
But her symptoms continued and she took a turn for the worse. A chest X-ray showed she had pneumonia.
Her health continued to decline, she started to stumble as she walked and she went back to her pediatrician.
Olivia was then sent to A.I., where she was given intravenous fluids to help with what was suspected to be dehydration, but she still didn’t improve. A computed tomography scan on Nov. 28 revealed that Olivia had medulloblastoma.
Lulu, Olivia’s mother, said there are several treatment options parents can choose for their children.
“The interesting part with medulloblastoma is there’s not a set treatment path for you to go through,” she said. “You have to decide the treatment. You have to pick your child’s poison.”
Olivia was admitted to the intensive care unit where her tumor was removed, and then she underwent one round of chemotherapy. She also had cerebral mutism and lost the ability to talk, walk and sit up.
Lulu said Olivia just finished proton radiation at Massachusetts General Hospital in Boston.
“The difference between proton and photon, the typical radiation, is proton is more of a focused radiation. They will radiate not only the tumor bed, which is on the back of the head, but they will also do the spine.”
Olivia will now undergo a year of chemotherapy, afterwhich her chance of survival will be 80 percent.
Drew has undergone regular and high dose chemotherapy and received his own stem cells to replace bone marrow he lost. He is scheduled to go to Massachusetts General for proton radiation therapy at the end of April.
“The radiation is devastating to the brain at this age,” Catherine said. “There could be long term effects learning wise, the possibility of having a little harder time in school, but you have to take your chances and pick your battles. Do you want to have problems learning, or cancer?”
She said the chance of survival after radiation and chemotherapy is 80 percent.
Both the Calbazana and Koenigs are faced with mounting medical bills from treatments that cost upwards of $500,000, plus the expenses of staying in Boston for the eight-week proton radiation.
Lulu said they were lucky to find Christopher’s Haven, which is an apartment complex that provides families of children going through proton radiation with a studio apartment for just $30 a night.
“It was phenomenal to be right across the street from the hospital with our own kitchen and bathroom,” she said.
While insurance pays for the majority of their medical bills, there are many out-of-pocket expenses.
“You’re still left with $3,000 here, $200 there,” Catherine said.
The Koenigs have also spent thousands of dollars to stay at a hotel near A.I. so they can be close to Drew. They’ve only spent two weeks total at their house since he began treatment.
Drew’s father, Andrew, is on disability from his job at E.I. du Pont in New Jersey and Catherine left her job at Let’s Dish in Middletown to care for Drew.
Drew is on a hiatus from school at Early Essentials Preschool in Middletown because he can’t be around other children as his immune system is weak and he is at risk for contracting viruses.
Drew’s 2-year-old brother Jackson also is having a hard time.
“We’re trying to make things as normal as possible for Jackson,” Catherine said. “We’re definitely spoiling him to compensate.”
Lulu is on unpaid leave from her job at Bank of America, and she is due to give birth her second child on April 15. Her husband, Alejandro, has been working remotely for his job with Corporation Service Company.
Olivia can’t go back to her early childcare center at Bank of America until she finishes her treatments.
Lulu said she and Catherine are trying to figure out how two children who live so close can be diagnosed with the same type of cancer around the same time.
“It could just be a coincidence,” Catherine said, “but could it be something in the area?”
Drew and Olivia are finally regaining their speech and movement after four months.
Lulu said Olivia’s voice also changed, which is common side effect of the surgery.
She said Olivia has suffered from night terrors while in the hospital, but those are becoming less frequent and she is doing better.
“She’s doing really good,” Lulu said. “The most difficult part for her was the first month and a half.”
Catherine said while Drew is undergoing all kinds of debilitating treatments, his spirits are just as high as they usually are.
“He’s been a trooper,” Catherine said. “The oncologist came in and said, ‘Drew, you got this high dose chemo and stem cell replacement, what are you doing?’ He was out of bed and laughing. It’s unbelievable.”
Benefit for Olivia
Benefits are planned for both Olivia and Drew to help cover their medical expenses.
On Sunday, March 15, five bands will come together from 3 to 8 p.m. at Tailgate’s Sports Bar & Grill in Newark for a fundraising evening of music.
The bands include The Witchdoctors, Bad Ju-Ju, The Dysrhythmics – which consists of all doctors, the Barrelhouse Blues Band and The Dimensions.
The night will include a silent auction, raffles and door prizes.
For more information, call Tailgate’s at (302) 738-8009. The restaurant is located at 4124 Ogletown Stanton Road in Newark.
A fund has been set up to help with Olivia’s medical expenses. Donations may be mailed to Olivia Lulu Calbazana Medical Fund, P.O. Box 5348, Wilmington, DE 19808.
Benefit for Drew
A benefit for Drew, who will turn 5 on March 17, will be held Saturday, March 21, from 6:30 to 10:30 p.m., in the Ivystone Room at the Frog Hollow Golf Club in Middletown,
The benefit will include a dinner of roast beef with au jus sauce, sausage and peppers and sides. Beer, wine and cash bar will be available.
The night will include a silent auction and raffles. Items available are a signed Philadelphia Flyer’s hockey stick, a signed Philadelphia 76ers Jersey, gift certificates to local restaurants and theaters, and more.
DJ Gizmo has donated his services to entertain for the evening.
“We want people to know how thankful we are,” Catherine said. “People want to help us out with anything, whether it’s meals or throwing this benefit. The generosity has just been amazing.”
A fund for Drew has also been set up. To donate, email badelizzi@comcast.net.
