Patient of the Week – Helen Tully

By St. Jude/PIO
Sept. 10, 2009

Helen Tully
2 years old

Diagnosis:

Helen was discovered to have rhabdomyosarcoma in February 2008.

Helen’s Story:

When Helen was born in 2007 in Latvia, she was a happy, healthy baby. Just eight months later, in February 2008, her mother, Andra, noticed a bruise on one of Helen’s buttocks. Concerned, she took her daughter to the pediatrician, who dismissed the bruise as nothing more than the result of Helen rolling over on a toy. But when a pea-like lump appeared overnight, and the bruise continued to spread, Andra took Helen to another doctor. He performed an ultrasound, and the results it revealed were devastating. Baby Helen had tumors on her pelvis. A follow-up MRI confirmed the presence of tumors, and surgery was scheduled for a week later.

Andra e-mailed a family friend in the United States to explain that she might be hard to reach for awhile because Helen was ill. The friend requested that she e-mail him Helen’s scans so that he could share them with friends of his who were physicians. He called Andra back quickly, and his advice was alarming. The physicians had reviewed the scans and felt that surgery would be dangerous. They recommended that Andra and her husband, John, bring little Helen to the U.S. for treatment, and one of the hospitals they recommended was St. Jude Children’s Research Hospital.

Andra and John searched online for the best options for Helen’s long-term treatment. St. Jude kept coming up, and since John had family in the area, they decided that St. Jude might indeed be the best place for their baby. Their doctor provided a referral, and the next few days were a whirlwind as the family prepared to travel to Memphis.

At St. Jude:

At St. Jude, doctors determined that Helen suffered from rhabdomyosarcoma, the most common, aggressive soft tissue tumor in children. Because of the size of Helen’s tumor, she could not undergo surgery right away. Doctors started her on a 54-week chemotherapy treatment plan. After her first two rounds of chemotherapy, Helen’s tumor had shrunken about 60 percent, much to her family’s delight. Helen later underwent surgery to remove the tumor, and radiation. Today, her scans show no evidence of disease.

“If we had not come to St. Jude, I don’t think Helen would have celebrated her first birthday,” Andra said. “In Latvia, we don’t have the medicine they have here. At St. Jude, the doctors and nurses are so wonderful, they care so much. We know Helen is getting the best possible care. Whatever the children want or need, whether it is ice cream or an MRI, they get. It’s amazing.” Helen is finished with treatment and returns to St. Jude every three months for checkups. She loves music, dancing and playing with her older brother, Martin.

Source: St. Jude

Editor’s Note: We would like to know what you think? dan@youngchronicle.com

Patient of the Week – Mitchell Franzer

By CDH/PIO
Sept. 1, 2009

Mitchell Franzer was born September 15, 1997 to delighted parents Bill and Sandy Franzer. Sandy had a healthy pregnancy, yet when she delivered Mitchell doctors noticed immediately something was wrong.

Mitchell was diagnosed with spina bifida. This was a shock to the Franzer family, but they had to focus on finding the best care for their son. Mitchell was transported to The Children’s Medical Center of Dayton just hours after he was born.

“When Mitchell was transported to Dayton Children’s so many questions were racing through our minds. One of the nurses comforted us and answered our questions. Her daughter also has spina bifida and she gave us hope that Mitchell would be OK,” says Bill.

Mitchell spent 21 days at Dayton Children’s Regional Level III Newborn Intensive Care Unit (NICU). “We were overwhelmed with taking care of a sick infant but the nurses and doctors were so caring,” says Sandy.

When Mitchell was just a baby, the doctors shared their concerns that Mitchell will likely never be able to walk on his own. He would be confined to a wheelchair indefinitely.

“It was difficult to receive the news that your son will not be able to walk, but Dayton Children’s gave us the tools to work with Mitchell to make him stronger.” Sandy worked with Mitchell constantly by doing the exercises they learned at Dayton Children’s. At 16 months old, Mitchell took his first step.

Mitchell is seen in the myelomeningocele clinic at Dayton Children’s which specializes in neural tube defects and related disorders. He is also seen in the physical and occupational therapy departments so he can gain strength in his muscles. Through all of his hard work, Mitchell has come a long way from the days when the doctors said he would never be able to walk.

Donald Nguyen, MD, is a urologist at Dayton Children’s and he and Mitchell have become close. Last October, Mitchell was admitted to Dayton Children’s because his bladder had ruptured, and Dr. Nguyen was there to take care of Mitchell.

“Mitchell has been through several major operations yet he has maintained a positive outlook on life,” says Dr. Nguyen.

“We have so much faith in Dr. Nguyen and he has been great with Mitchell,” says Sandy.

“Dr. Nguyen gives us his time to explain and answer our questions. That does not happen at every hospital and this is why Dayton Children’s is so unique,” says Bill.

Mitchell is now 11 years old and attends St. Henry Middle School in St. Henry, Ohio. He loves to play sports and dreams of being a farmer one day. When Mitchell is not working on his homework, he enjoys watching Ohio State Football, the Cleveland Cavaliers and Bull Riding.

According to Sandy, “After everything we have been through, Dayton Children’s is the only place we will ever go.”

Source: Childrens Dayton

Editor’s Note: We would like to know what you think? dan@youngchronicle.com

Patient of the Week – Talyn Conley

By St. Jude/PIO
August 25, 2009

Talyn Conley
2 years old

Diagnosis: Talyn was found to suffer from bilateral retinoblastoma in April 2008.

Talyn’s Story:

The first indication that something was wrong with Talyn came during a well baby checkup when she was 10 months old. Talyn’s doctor noticed a whiteglare in her eyes and sent Talyn and her mom to a specialist. The news was devastating. Talyn suffered from cancerous tumors in both her eyes, known as bilateral retinoblastoma.

Talyn was referred to St. Jude Children’s Research Hospital right away. “We didn’t have time to go home,” said Talyn’s mom. “Once the doctor said weneeded to go to St. Jude, we got right on a plane. Our whole world changed overnight.” Within hours, Talyn and her parents were on their way to Memphis.

At St. Jude:

When they arrived at St. Jude, Talyn’s parents were full of worry, but St. Jude staff assured them that their baby was at the best place possible for her treatment. Talyn underwent seven months of chemotherapy and four laser surgeries on her eyes.

Talyn’s parents felt anxious about the cost of their daughter’s medical treatment, and they were understandably overwhelmed. Talyn’s dad said he would work three jobs if necessary to save his little girl.

But when they learned St. Jude provides treatment regardless of the family’s ability to pay, they were amazed and relieved. “We didn’t know that St. Jude helps out so much,” Talyn’s mom said. “It was a big load off our shoulders.” They were able to focus on what was important—getting Talyn well.

Talyn responded well to treatment. Her doctors are hopeful they were able to save her eyesight. In December, Talyn was able to return home in time for Christmas. She visits St. Jude every six weeks for checkups. Talyn is walking and talking, and has a new puppy with whom she loves to play.

Editor’s Note: To help give hope to children like Talyn who are fighting life-threatening illnesses, please become a Partner In Hope.

We would like to know what you Think? dan@youngchronicle.com

Source: St Jude Hospital

Patient of the Week – Bria Brown

By Shands/PIO
August 20, 2009

Bria Brown, a 13 year-old Miami girl, calls herself the Queen Bee Survivor — and that she is. When she was only 6 years old, she was diagnosed with osteosarcoma, a rare, progressive form of bone cancer. The disease targets the knees, one of the fastest growing areas in the legs. Osteosarcoma is so rare that only one baby in a million will develop the disease.

Bria’s mother Carol took Bria to the emergency room to be treated for an unrelated illness when Bria reminded her to talk with the doctor about the pain she was experiencing in her left leg. “I thought the pain had come from her jumping around and running,” said Brown.

Bria’s mother said after Bria was diagnosed with bone cancer, their lives were turned upside down. “Bria was hospitalized for almost nine months in Miami Children’s Hospital. She lost all of her hair from the chemotherapy, and I lived at the hospital,” said Brown.

After Bria completed chemotherapy seven years ago, she and her parents learned that the bone cancer had spread to other areas in her leg. The recommended solution was amputation. “That just wasn’t an option for us,” said Brown, who was determined to spare her daughter’s leg and quality of life.

Bria’s physician referred her family to a University of Florida orthopaedic surgeon in Gainesville who was helping patients avoid amputation thanks to a new rod implantation procedure.

“My husband told the doctor that we were radical people who were willing to consider anything besides amputation,” added Brown.

Life-changing surgery

In 2001, Bria and B. Hudson Berrey, M.D., a professor in the UF Department of Orthopaedics and Rehabilitation, met for the first time with the hope of sparing Bria’s leg.

“Because the disease had almost spread to her hip, they didn’t think she was a candidate for a limb-sparing procedure, which is why they recommended amputation,” said Berrey, who performed Bria’s initial surgery seven years ago at Shands at the University of Florida in Gainesville.

Berrey said the most difficult part of performing the seven-hour surgery was removing all of the cancer, then removing the diseased femur (thigh bone). Berrey reconstructed Bria’s leg using a custom-made implant.

“The first rod grew her leg a fair number of inches, and then two years ago she had a revision. I replaced the original one, which had gotten as long as it would go. I redesigned the proximal end and put a new rod in to continue to watch her grow,” said Berrey.

As Bria grows, her leg can be lengthened by heating an element in the implant that allows a spring inside of it to expand, thus allowing her left leg to grow the same length as the right leg.

Berrey has shared this procedure with other orthopaedic surgeons but says there are very few surgeons who will do this type of procedure and address these problems. “You have to believe in it, and I believe it is the best solution that we have at this point in time,” said Berrey.

Building lasting relationships

Bria and her family make the trip to Shands Jacksonville every three to four months to have her leg adjusted. Berrey, who was appointed chair of Orthopaedics and Rehabilitation at the UF College of Medicine-Jacksonville in 2002, have continued to develop a very special relationship with the Brown family. Bria says because Berrey saved her leg, she now wants to attend the UF and become a pediatrician.

“I want to give back because it is something I enjoy doing,” said Bria, who spends a lot of time dancing, and participating in extracurricular activities. She currently holds a 3.7 grade point average and has raised more than $120,000 for the American Cancer Society as a volunteer. “I will be going to Washington, D.C., in May to represent the state of Florida for the Spirit of the Community Award that will be presented by the American Cancer Society.”

Berrey said it has been a rewarding experience working with Bria and getting to know her family. “When I first met Bria, her sister Jada was just a baby and now she’s 6 years old, the same age Bria was when I performed her initial surgery. Now I have a special relationship with her father Ed Brown and her grandparents.”

Source: Shands Children Hospital

Editor’s Note: We would like to know what you think? dan@youngchronicle.com

Patient of the Week – Justin Ferrence

By CDH/PIO
August 13. 2009

Pamela Duminske went into labor 11 weeks before her due date. She gave birth to a premature baby boy named Justin. Immediately after Justin was born he needed medical attention. He was having trouble breathing and the doctors feared other medical complications could arise.

The doctor’s determined Justin needed more specialized care, so he was transported to The Children’s Medical Center of Dayton’s Regional Level III Newborn Intensive Care Unit (NICU). Justin stayed in the NICU for three weeks where he was on a ventilator and monitored closely.

“I had a sense of comfort in the NICU because I knew Justin was well taken care of by the nurses and staff,” says Pamela.

Pamela noticed Justin was not growing like he should be at 10 months old. “Justin was not crawling and it was difficult for him to sit up,” A CT scan was performed. Soon after, Justin was diagnosed with cerebral palsy.

Cerebral palsy is a neurological disorder that affects muscle movement and control. In some cases, cerebral palsy can affect speech and cognitive development. Due to the lack of muscle control, many cerebral palsy patients use a wheelchair, or need assistance to walk. Justin’s prognosis was filled with extensive surgeries and lots of physical therapy.

Justin is seen in the neurology department, the cerebral palsy clinic and the orthopedic department at Dayton Children’s. Daniel Lacey, MD, has worked with Justin for several years.

“Dr. Lacey has improved Justin’s health tremendously by prescribing a baclofen pump that helps with Justin’s tight muscles,” says Pamela.

Justin has been in a wheelchair since kindergarten, but this has not deterred his “go-getter” attitude and in 2008, Justin graduated from Xenia High School.

“Justin had the ability to look beyond his wheelchair and set goals that he knew he could accomplish even if he had to work twice as hard as the other students,” says Pamela.

Last year Justin attended Clark State University and passed his courses with a 4.0 average. In a speech communications class, Justin had an assignment to give a speech in front of the entire class and be graded on performance. The professor told Justin that he did not have to do the speech, but Justin was determined to do the assignment just like the other students. He worked very hard and practiced for hours; he gave the speech in front of the entire class and received an A.

Today Justin is 20 years old and still focuses on graduating from college. “I had to take a break from college due to financial difficulties and health problems, but I am determined to become a teacher one day,” says Justin.

“Dayton Children’s caters specifically to child’s needs. This always made us feel right at home,” says Pamela.

Source: Childrens Dayton

Editor’s Note: We would like to know what you think? dan@youngchronicle.com

Patients of the Week – Javon and Jakayla Bass

By St. Jude/PIO
August 5, 2009

Javon and Jakayla Bass
8 and 3 years old

Diagnosis:

Javon was discovered to have acute lymphoblastic leukemia (ALL) in 2003 and his sister Jakayla was found to suffer from ALL in 2008.

Javon and Jakayla’s Story:
When Javon was 2 years old, he was diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer. He underwent three years of chemotherapy at St. Jude Children’s Research Hospital. Near the end of his treatment, doctors discovered Javon had suffered a relapse and would need more chemotherapy, as well as radiation. Javon began his new course of treatment at St. Jude, and was nearly always accompanied by his mom, Lisa, and baby sister, Jakayla.

In fall 2008, about a month before Javon finished treatment for a second time, Jakayla became sick. She had the symptoms of a cold, and then she stopped eating. Lisa took her to their local doctor, who did blood work. The results of those tests were troubling, and the doctor quickly referred the family to St. Jude.

At St. Jude:
Faced with the possibility that not one, but two, of her children were suffering from cancer, Lisa was devastated. “I thought I was in a dream, and I’d wake up,” she said. But she trusted the medical experts at St. Jude.

St. Jude doctors quickly determined that, like her brother, Jakayla suffered from acute lymphoblastic leukemia. She began an intense chemotherapy protocol.

Lisa says that it was hard for Javon to learn that his little sister had cancer too, but the Child Life specialists at St. Jude explained to him that he could help her get through it, and that made him feel better.

The two children couldn’t be closer. They like to sing together and play Gameboy™.

“Jakayla loves Javon,” Lisa said. “She wants him always by her side.”

And although Jakayla still has two more years of treatment to go, Lisa is happy to report that her little girl is in remission.

Editor’s Note: To help give hope to children like Javon and Jakayla who are fighting life-threatening illnesses, please become a Partner In Hope.

We would like to know what you Think? dan@goldcoastchronicle.com

Source: St Jude Hospital

Patient of the Week – Adrianna Scott

By CDH/PIO
July 30, 2009

 

Adrianna Scott

As an infant, Adrianna Scott of Xenia struggled to eat and cried more often than other babies. Heather, Adrianna’s mother, knew something was wrong with her baby when the crying did not stop and feeding time became a hassle. Heather realized that she needed to find out why Adrianna was not feeling well, so she went to The Children’s Medical Center of Dayton.

After numerous tests came back negative, the doctors at Dayton Children’s had one more test that they could do for Adrianna. This final test came back positive and Adrianna, just 6 months old, was diagnosed with cystic fibrosis.

Cystic fibrosis is a chronic disease that affects the lungs and digestive system. The disease produces thick mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas from breaking down and digesting food.

Adrianna does breathing treatments twice a day to help loosen the thick mucus from her lungs. Along with the breathing treatments, Adrianna also takes up to eight different medications a day to help her live with cystic fibrosis. The medications help her digest food properly and stay healthy when even a cold can be life-threatening to her body. Adrianna also wears a special vest that helps to shake the mucus from her lungs so she can breathe better.

“Daily breathing treatments, multiple medications, and being cautious of any common cold has just become a part of our everyday routine,” says Heather.
When Adrianna was just 2 years old, her baby twin sisters were also diagnosed with cystic fibrosis. The twins were cared for in the Regional Level III Newborn Intensive Care Unit (NICU) at Dayton Children’s.

“The nurses in the NICU were very nice and comforting during this tough time in our lives.”

All three girls are under the care of Robert Fink, MD, director of pulmonary medicine at Dayton Children’s.

“Dr. Fink accommodates our challenging family health situation by spending time with us and answering our questions,” says Heather.

Today, Adrianna is a busy 12-year-old and will not let cystic fibrosis prevent her from accomplishing her goals. She balances going to school at Warner Middle School and competitive cheerleading practices every week. She also has a great love for animals and her two favorite animals are polar bears and penguins. Adrianna dreams of becoming a zoologist one day so she can work with the animals she loves.

“I have really enjoyed getting to know the nurses at Dayton Children’s. They are always really nice and make me feel at home when I am in the hospital, it’s too hard to pick one favorite nurse because they are all great,” says Adrianna.

Source: Children Dayton Hospital

Editor’s Note: We would like to know what you think? dan@youngchronicle.com

Patient of the Week – Robert Brindle

By St. Jude/PIO
July 22, 2009

 Robert Brindle
9 years old

Diagnosis:

Robert was found to suffer from acute lymphoblastic leukemia in December 2008.

 
Robert’s Story:

When 8-year-old Robert unwrapped a new Xbox 360 on Christmas morning, his parents immediately realized something was wrong. Robert, who had long coveted the video game console, showed no excitement for the gift. That weekend, Robert developed terrible nosebleeds and was listless. By Tuesday, he wasn’t feeling any better. His doctor ordered blood work, which revealed devastating news—Robert was suffering from acute lymphoblastic leukemia, the most common form of childhood cancer. The doctor referred him to St. Jude Children’s Research Hospital.

 
At St. Jude:

When Robert and his parents arrived at St. Jude later that evening, they were afraid. “I couldn’t wrap my head around the fact Robert had cancer,” his mother said. But right away, they felt at ease. “Someone was waiting for us,” she said. “They knew who Robert was as soon as we arrived.”

Robert started a two-and-a-half year treatment protocol immediately. He takes oral chemotherapy every night, and visits St. Jude once a week for intravenous chemotherapy. Robert is a bright child who often asks his doctors at St. Jude very detailed questions about his treatment. “He trusts them,” said his mom. “The staff is very straight forward and they explain everything to him.”

please donate today.

Source: St. Jude

Editor’s Note: We would like to know what you think? dan@youngchronicle.com

Patient of the Week – Noelle Parziale

By CDH/PIO
May 13, 2009

 

Noelle Parziale of Springboro is an active 7-year-old, who enjoys swimming, ballet and soccer. Noelle also has type 1 diabetes. Her mother Karen Parziale remembers the time three and a half years ago when she learned 3-year-old Noelle had diabetes.

Noelle had wet the bed two nights in a row, which was highly unusual, so I thought she had a urinary tract infection. I called her pediatrician and made an appointment,” she recalls. Her pediatrician took a urine sample and performed a blood test. He came back into the room and told Karen that Noelle’s blood sugar levels were so high they did not even register on the equipment in the office. He then told Karen she needed to take Noelle to Dayton Children’s emergency department right away.

“I was in total shock,” Karen recalls. “I’ll never forget the drive to Children’s. Noelle’s elder sister, who was then 7, was in the back seat crying. Our cat had died from diabetes a month earlier and she thought the same thing would happen to Noelle.”

Noelle was hospitalized at Dayton Children’s for about five days, with two of those days spent in the pediatric intensive care unit. She was diagnosed with type 1 diabetes. During that time, the Parziales met with Maria Urban, MD, a pediatric endocrinologist at Dayton Children’s, as well as members of the care team, who educated them about diabetes, counting carbs, checking Noelle’s blood, giving insulin and nutrition and exercise.

The Parziales have been “thrilled” with the care they have received at Dayton Children’s. “Dr. Urban and her staff are so wonderful. They are always willing to answer all our questions. They encourage me to be proactive in Noelle’s care. Dr. Urban is always willing to listen to my observations about Noelle and work with me to determine what’s best for her.”

Cynthia Cohoon, RN, is the diabetes care coordinator at Dayton Children’s. “Type 1 diabetes is the most common form of diabetes diagnosed in children,” she says. Cohoon explains that type 2 diabetes, formerly known as adult-onset diabetes, is on the rise in children. This type of diabetes is most likely to occur when someone is overweight.

“No one knows for sure what causes type 1 diabetes,” Cohoon says.

According to the experts, genes play some role in diabetes, but it does not always run in families. For some unknown reason, the body sees its cells as foreign and starts making antibodies against those cells. In diabetes, these antibodies attack and destroy the insulin-making cells in the pancreas so they are not able to make insulin anymore. A virus or other environmental factors may cause this to happen, which means the body will need another source of insulin to get energy from food.

This other source of insulin most often takes the form of insulin shots. According to Karen, Noelle gets four to six shots every day: two in the morning, one after lunch and dinner, and others as needed. Checking her blood sugar level and giving shots as needed has affected the family’s lifestyle.

“We are very fortunate that there is a full-time school nurse at Incarnation Catholic School in Centerville, where Noelle just finished first grade,” Karen says. “She gives Noelle her shots as needed and calls me if we need to make a judgment call. That’s been wonderful.”

Karen explains that her family is more conscientious of nutrition. “Noelle is on a regimen, but the whole family eats a lot of whole grain breads, pasta, fresh fruits and vegetables. We avoid sugary, processed foods. We also need to think long term about Noelle’s health, since diabetes can lead to heart disease, stroke, and kidney, liver and eye damage.”

Karen makes it a point to keep Noelle “positive and empowered. There are so many new treatments on the horizon, I want to let her know there is hope for her and others like her.”

The Parziales’ attention to Noelle’s health has paid off: The active 7-year-old competes on a swim team and soccer team and takes ballet classes. She is a youth ambassador for the Juvenile Diabetes Research Foundation International (JDRF) and will be attending a summer camp sponsored by the Dayton Area Diabetes Association.

At Dr. Urban’s invitation, Noelle recently spoke to a group of medical students at Wright State University Boonshoft School of Medicine about what it’s like to have diabetes. “She loved it,” Karen says. “Afterward she told me ‘Wow, I’m actually helping these people who are going to be doctors.'”

Source: Childrens Dayton

« Previous Page