Thanks to study-drug, Accutane, 2-year-old Bailey Bennett of Independence and her family are hoping that her life-threatening illness will be in remission this month.
Last June Bennett was diagnosed with neuroblastoma, a cancer of the nervous system. This cancer occurs only in infants and children under the age of 10. As in most cases, Bailey’s began in her abdomen.
In October, she underwent a successful surgery of her abdomen, where a large part of the malignant mass was located. In November, Bailey had a scan that showed no cancer cells left in her body.
“She knows she’s sick and taking medications,” Polen said. “But it’s her life.”
Now, Bailey is participating in a medical study and taking Accutane, an adult acne mediation. The study requires that she take the medication for 14 days and then come off of it for another 14 days. The objective of the study is to test which medication works better: Accutane or a type of antibody medication. So far, the Accutane has been proven to stop the growth of the neuroblastoma cells and has been a success for Bailey.
In addition to her Accutane medication, Bailey has to take seven other medications twice a day. If that wasn’t enough for the now almost 3-year-old, she goes in once a month for lab work before she begins each 14-day Accutane regiment.
Because of the frequent appointments for Bailey’s scans, Polen is unemployed, but the mother and daughter duo believes they live a fairly normal life. Their day begins in the morning when Bailey gets up and takes her seven medications. On some days, the two visit Bailey’s grandparents, on other days, the two have their mommy-daughter time alone.
“It’s just me and her so we kind of do what we want,” Polen said.
When they’re not out enjoying the day, Polen has to clean Bailey’s hickman, or central line, which is a system of tubes inserted in Bailey’s bloodlines though her chest.
“The tubes are used if the doctors have to take blood, and chemo was given there, too,” Polen said. “She doesn’t have to get pricked because they access her blood through the line, and she doesn’t feel any pain.”
Polen is hopeful that the lines will be removed as early as the end of August when doctors hope to declare Bailey’s neuroblastoma in remission. At this time, because Bailey has been slowly experiencing vision loss, doctors will follow-up with a vision and hearing test.
“If she’s in remission, the tubes will come out, but the doctors may wait until December to do it,” Polen said. “The cancer has a high-rate of about 70 percent to return.”
If all goes well and doctors declare Bailey’s cancer is in remission, Polen expects doctors will want to take more scans to make sure the cancer is gone. In the past, they’ve performed full body CT and MRI scans as well as an MIBG scan, which is a specific neuroblastoma scan. To do this, doctors inject Bailey with a nuclear medication that allows only the cancer cells to show up on the scan. In addition to those tests, Bailey has endured bone scans and a bone marrow aspirate, which involves taking out portions of bone marrow from her lower back.
“Bailey is always under anesthesia for all of those scans,” Polen said. “Usually her back is sore afterwards, but it only lasts a day or two, and she doesn’t feel the pain while doctors are doing it.”
Because of her central line, Bailey is unable to go to daycare, but if she is in remission by the time she is old enough to start kindergarten, her neuroblastoma cancer will be a thing of the past, and she can go to school like any other 5 or 6-year-old.
Over the course of the last year, Polen has received donations from all around the area and was impressed by the amount of people willing to help her and Bailey along the way. Since she doesn’t have a steady income, the money from donations helps the family a lot with medical bills, especially.
“We’ve had a lot of fundraisers since last June,” she said. “Our friends, family, and people we don’t even know have raised money for us.”
Video from August 2007:
