By Dr. Hatim Omar and Dr. Stephanie Stockburger

LEXINGTON, Ky. (May 30, 2013) — As she grows older, young cancer survivor Ava May might not remember all the obstacles she overcame in the first few years of her life, but through a special project developed by her mother, Allison, she'll one day be able to understand how far she's come.

In 2011, then three-year-old Ava was diagnosed with a rare form of kidney cancer called a Wilms' tumor. Only about 500 children each year are diagnosed with the disease, and most are very young, like Ava.

After conferring with doctors at Kentucky Children's Hospital and a Wilms' tumor specialist from Washington, D.C., Ava underwent surgery to remove the tumor -- weighing in at five pounds -- and completed 21 weeks of outpatient chemotherapy.

During this time, Allison — a professional photographer here in Lexington — came up with an idea to document their experiences: a photo archive of Ava's journey through treatment. Allison enlisted the help of fellow photographer and friend Cara Dee Cecil and their work began.

"I thought it would be a good way to step back from things," Allison said. "And create an archive of what happened for Ava to see when she's older."

The journey lasted longer than the Mays expected. After completing her outpatient chemotherapy, Ava experienced an immediate metastatic relapse, meaning the cancer had spread to her lungs. More surgery followed — a wedge resection on both lungs — followed by seven months of inpatient chemotherapy and radiation.

Allison and Cara's photo archive spans more than two years of Ava's progress, from the lows — Ava losing her hair and enduring chemotherapy in her hospital bed — to the highs — Ava taking her 'victory lap' around the floor of Kentucky Children's Hospital after she was declared cancer-free in May 2012.

To celebrate her one-year anniversary of beating cancer, Allison and Cara put together a special art exhibition featuring Ava's journey. "Ava Lucille: The Archive" will be unveiled from 7 to 10 p.m., Friday, May 31, at Bellini's Ballroom on 115 West Main St. The event will also feature live music and a silent auction. A suggested $10 donation will be accepted at the door, with proceeds benefiting Kentucky families affected by pediatric cancer. 

MEDIA CONTACT: Allison Perry, (859) 323-2399 or allison.perry@uky.edu

LEXINGTON, Ky. (May 7, 2013) - The following column appeared in the Lexington Herald-Leader on Sunday, May 5.

By Dr. Patrick O'Donnell

There are two types of bone cancers. Primary bone cancers (sarcomas) are the rarest type of human cancer and probably affect fewer than 100 Kentuckians per year. Metastatic cancer which spreads to the bone is much more common, and often originates in the prostate, breast, thyroid, kidney or lung.

Bones have a complex network of cellular types, so primary bone cancer can develop in cells designed to make bone itself (osteosarcoma), cartilage (chondrosarcoma), fibrous tissue (spindle cell sarcoma of bone), or the marrow elements (multiple myeloma). There are also other types of tumors which occur in bone which we haven’t fully characterized, such as Ewing’s sarcoma of bone.

How does bone cancer develop?

Any bone in the body can develop a cancer, but bones that grow the fastest (like the knee and the shoulder) have a higher risk for cancer. Additionally, specific types of bone cancer are common in certain areas. For example, Ewing’s sarcoma of bone tends to occur in the flat bones of the pelvis, shoulder girdle, and spine, while osteosarcoma and chondrosarcoma typically occur in the limbs.

There are some genetic syndromes that predispose patients to develop certain types of bone cancer, but most cases are sporadic. There is no association between bone cancer and lifestyle or environmental factors. Most cases of bone cancer are just genetic bad luck.

How is bone cancer treated?

The two types of bone cancer are treated differently. For primary bone cancers that haven’t metastasized, we have an opportunity to cure the patient with appropriate care.

Treatment for primary bone cancers typically involve a combination of chemotherapy and surgery. These are the rarest and most aggressive types of human cancer, and surgery to remove them is carefully planned.

Think of the cancer like the fruit of an orange — these cancers are so aggressive, they have to be removed with a “rind” of normal tissue completely surrounding the tumor so that the cancer doesn’t see the light of day during surgical excision.

These surgeries are difficult due to the complex anatomy of the skeletal system — the location of the cancer can mean that you are only millimeters away from major blood vessels or nerves that serve other areas of the body.

Twenty years ago, bone cancer was treated with amputation more than 90 percent of the time.

Today, with advanced surgical techniques, limb-salvage surgery is the treatment of choice. After removing a section of bone from the body, we have developed internal prosthetic devices which can restore function for children, young adults and adults who have been afflicted with bone cancer. These truly “robotic” internal prostheses can restore leg length, gait, and can even grow with a growing child.

When a cancer spreads to the bone from another organ, however, the ability to “cure” that cancer decreases drastically. As such, treatment of metastatic cancer to bone typically involves improving the quality of life by decreasing pain and improving patient function.

Dr. Patrick O’Donnell is an orthopaedic oncologist for UK HealthCare.

LEXINGTON, Ky. (April 23, 2013) - The following column appeared in the Lexington Herald-Leader on Sunday, April 21.

By Dr. Jamie Pittenger

April is National Child Abuse Prevention Month, and unfortunately, Kentucky is one of the worst states for child abuse and child deaths due to non-accidental trauma.

Each year in Kentucky, there are more than 14,000 substantiated reports of abuse and neglect. The result is that Kentucky averages 30 to 40 child deaths each year involving abuse and neglect, with another 30 to 60 near fatalities annually. Child abuse does not discriminate based on race, religion, or socioeconomic status.

The aftermath of physical abuse usually requires ongoing treatment and therapy, and often results in irreversible brain damage and limits on cognitive development, causing lifelong learning and socialization challenges.

The financial resources to treat the physical and psychological needs of victims of child abuse are often derived from state-funded programs generated and maintained from taxpayers’ dollars; not to mention the staggering monetary drain it takes to prosecute, incarcerate, and rehabilitate perpetrators of child abuse.

Child abuse hurts everyone. So, how can parents, teachers, relatives, friends and other caregivers help to prevent child abuse?

• Know how to spot the signs of abuse. Young children are not able to report abuse, and older children may be too afraid to do so. Bruising is an important warning sign for child abuse for infants and children. For a non-mobile infant, bruising of ANY KIND is not normal. For a child of any age, bruising to the ears, neck, torso, buttocks or genitals should raise concerns. If you see bruising, seek immediate medical attention for the infant or child.

• Be aware of steps to staying in control to prevent abuse. It is normal to feel frustrated when a baby or young child cries, but crying is the way they communicate. If you are feeling frustrated or angry, take a break. It’s OK to leave the baby in a crib or other safe place while you take a moment to regroup.

• Use extreme care when deciding who can watch your child. If you don’t have total and complete trust in the person, then don’t trust him or her with your child.

• Know how to report child abuse. Federal and state laws require that you report any suspected child abuse, and you have several options to do so.

•  In situations involving children in immediate danger, call 911 or the local emergency number. In Kentucky, if you need an immediate response to your report, call the Kentucky Child Protection Hotline toll free 24/7 at 877-KYSAFE1 (877-597-2331). Anonymous calls are accepted. To report non-emergency situations that do not require an immediate response, you can use the web-based reporting system at https: //prd.chfs.ky.gov/ReportAbuse from 7 a.m.-3:30 p.m. Monday-Friday, except for state holidays. Anonymous reports are accepted.

• Finally, know where to find good sources for more information about resources and child abuse prevention. In Kentucky, contact Prevent Child Abuse Kentucky at 859- 225-8879, toll free at 1-800-244-5373, or PCAKY.org.

The Childhelp National Child Abuse Hotline, staffed with professional counselors, is available 24/7 at 1-800-422-4453 or Childhelp.org.

Dr. Jaime Pittenger is an assistant professor of pediatrics at the University of Kentucky and a physician at Kentucky Children’s Hospital.

LEXINGTON, Ky. (March 26, 2013) - March 3, 2013, is a day Heather and Dustin Stephens will never forget. Ever.

Their 6-week-old son, Kasen, had been sick. He had a cough that just would not stop. The worse his cough became, the more trouble Kasen had breathing. He had not spiked a fever, but they knew something was wrong.

So they decided to take Kasen to Baptist Regional Hospital in Corbin, where he was diagnosed with pneumonia. Kasen's breathing worsened, and doctors decided Kasen needed to be transported to the Kentucky Children's Hospital (KCH) for care. Heather and Dustin would follow the transport to Lexington.

As the KCH pediatric/neonatal transport team loaded Kasen into their specialized pediatric ambulance, they told Heather and Dustin that if anything happened while they were traveling - if Kasen's situation worsened - the driver would pull the ambulance over to the side of the road. If that happened, Heather and Dustin were to stay in their car and wait for information from someone in the ambulance.

About 15 minutes into their trip to Lexington, Heather and Dustin saw the ambulance pull over. Heather says at that point, everything became a fog.

Dustin jumped out and ran to the ambulance. Heather followed him. When they got to the ambulance, they witnessed the team performing CPR on their tiny baby.

The next moment was unfathomable for Heather.

"Kelly (Turner, of the transport team) said 'you're going to get in this ambulance, and you're going to kiss your baby'." Heather said. "I thought that would be the last time I kissed him, but it wasn't."

What followed was the longest drive of Heather's life, she said. Members of the transport team called Heather regularly throughout the rest of the trip to let her know that Kasen was doing well.

***

The Kentucky Kids Crew - the Kentucky Children's Hospital's pediatric/neonatal transport team - provides inter-facility (hospital-to-hospital) critical care transportation for both neonatal and pediatric patients. They are the only transport team in the region exclusively dedicated to transporting newborns and children.

The team is dedicated to pediatric and neonatal transport 24 hours a day, seven days a week, and 365 days per year. The team averages 700 transports a year in a service area that includes Kentucky, West Virginia, Ohio and Tennessee.

Kasen was one of the dozens of pediatric patients transported by the Kentucky Kids Crew this month. The Kentucky Kids Crew's Facebook page is filled with comments from appreciative parents,

For Heather, this experience was life changing. If not for the Kentucky Kids Crew, Heather says, she is certain Kasen's outcome would have been different.

"If it hadn't been them - a team that is specialized in what they do - I think we would have attended Kasen's funeral instead of bringing him home," Heather said.

The Kentucky Kids Crew is led by neonatologists and pediatric intensivists and includes:

• Critical care nurses trained in advanced procedures such as intubation, chest tubes and umbilical line placement

• Emergency medical technicians (EMT) who drive the ambulances used for ground transport

• Air Methods of Kentucky, which provides pilots and helicopters used for air transport

• A dedicated transport team on duty 24 hours a day, ready to be mobilized immediately when a referring facility calls

The transport team utilizes state-of-the-art ambulances, helicopters and other equipment specially designed to meet the needs of our young patients.

The team vehicles are equipped as mobile intensive care units that enable the team to provide neonatal and pediatric critical care. They are a close-knit team that encourage and support each other in their roles and exemplify the mutual respect that encompasses Kentucky Children’s Hospital. 

In January, the Kentucky Kids Crew transported 88 patients - the most in a single month since December of 2006.

"Research shows that transporting these fragile patients requires an experienced team and access to specialized vehicles and equipment,” said Dr. Scottie Day, medical director of the Kentucky Children's Hospital pediatric/neonatal transport team. "As a parent, you can rest assure that when we arrive at outside facilities, we bring the cutting-edge intensive care capabilities of KCH.” 

The team is also involved in other endeavors beyond the transport and stabilization of neonatal and pediatric patients. In January of 2012, the Kentucky Children's Hospital joined six other children's hospitals to form the first-ever national consortium to benchmark and set guidelines for quality and safety on critical care transports.

***

On March 14, after 12 days in the Kentucky Children's Hospital, Kasen went home.

As Kasen continues to get stronger and grow, Heather remains thankful for the people who were there to care for Kasen during such a difficult time.

"They saved his life," Heather said. "They were God-sent for sure."

The Kentucky Children's Hospital pediatric/neonatal transport team members are: Debbie Rice, Tina McCoy, Kimberly Samuelson, Kelly Turner, Kate Fletcher, Yoshiko Ishmael, Caty Curlis, Alissa Richey, Jennifer Moore, Carrie Shepperson, Terry Nalle, Erin Willis, Lynne Kain and Shelly Marino. EMTs and Paramedics from the UK Emergency Communications Office drive the ambulances and assist the nurses when necessary in patient care.