Posts tagged ‘Children’s Hospital’

Four Diamonds assists families like the Hess family during cancer fights

Editor’s Note: Penn State’s THON Weekend is Feb. 20-22. Students will dance for 46-hours to support pediatric cancer patients. To date, $114 million has been raised and donated to Four Diamonds, a foundation that supports the families of pediatric patients at Penn State Hershey Children’s Hospital, and the cancer research done here. For more information on THON, or to watch the activities live, visit THON.org. For more information on Four Diamonds, visit FourDiamonds.org.

Playing iPad games and shaking a tambourine may not seem special to the parents of most preschoolers.

But, for parents of children battling cancer, it’s the little things like these that can brighten even the darkest of days.

Providing normalcy in the midst of treatment is part of the services supported by Four Diamonds, the sole beneficiary of The Penn State IFC/Panhellenic Dance Marathon (THON) happening this weekend.

Four Diamonds supports children and their families facing the challenges of pediatric cancer by paying for care and treatment not covered by insurance or other means as well as additional expenses that disrupt the welfare of the children.

Lydia Hess

Lydia Hess

One of those families is the Hess family from Harrisburg. Lydia was diagnosed with leukemia in April of 2014 at the age of 2.

Four Diamonds makes it possible for 16 specialty care providers to be available exclusively to Four Diamonds patients and their families – including child life specialists, a clinical nutritionist, a clinical psychologist, nurse specialists, social workers, music therapists, a clinical nutritionist, and pastoral care.

“All of those things have made Lydia’s life and our days so much easier,” said Julie Hess, Lydia’s mother. “Just to make one day easier is a big deal to us. We’ve had a lot of really hard days.”

Lydia’s diagnosis was a complete surprise to the family. Last winter, she had recurring fevers.

“She was 2 and interacting with other kids — going to preschool once a week, swim classes and church– so we figured she was just picking up all the germs,” Julie said.

In April, Lydia’s fever spiked higher than normal and she began complaining of finger pain. Julie and her husband, Brandon, suspected something unusual was happening.

“The pediatrician examined her and said ‘let’s do some x-rays, let’s do some blood work,’ but they never mentioned the word cancer or leukemia,” Julie said.

Two hours after Lydia’s appointment, her doctor called the family.

“You know when you get a call at home that quickly after you’ve been there, it’s not good,” Julie said.

(more…)

February 20, 2015 at 7:01 am Leave a comment

Pediatric experimental cancer therapeutics program’s success is thanks to Four Diamonds support

Editor’s Note: Penn State’s THON Weekend is Feb. 20-22. Students will dance for 46-hours to support pediatric cancer patients. To date, $114 million has been raised and donated to Four Diamonds, a foundation that supports the families of pediatric patients at Penn State Hershey Children’s Hospital, and the cancer research done here. For more information on THON, or to watch the activities live, visit THON.org. For more information on Four Diamonds, visit FourDiamonds.org.

Dr. Valerie Brown

Dr. Valerie Brown

When Dr. Valerie Brown was hired as clinical director of the experimental therapeutics program in the Division of Pediatric Oncology/Hematology at Penn State Hershey Children’s Hospital, she had a vision: Develop a menu of experimental cancer treatment options not available in the region.

Through funding from Four Diamonds, her vision is becoming a reality, helping young cancer patients find alternatives when standard care isn’t enough.

Experimental therapeutics are typically phase 1 and 2 clinical trials. In phase 1 trials, researchers are looking for toxicity in the therapies. In phase 2 trials, the effectiveness of the therapies on specific cancer types is studied before testing in bigger studies.

“I really hit the ground running, and one of the things we needed to do was expand the portfolio because you don’t want to compete with other academic medical centers,” Brown said. “You want to offer things not offered at other places and be able to offer a variety of different studies for a large spectrum of cancer types.”

To help with that goal, Penn State Hershey joined several consortiums including the Neuroblastoma and Medulloblastoma Translational Research Consortium. The consortiums bring together several institutions all sharing the same goal by working together cooperatively, opening up access to a variety of clinical trials.

Brown has seen how the approach is working.

In one case, a child had neuroblastoma in remission and was set to participate in a study to keep the cancer in remission, called maintenance therapy. But as scans and imaging were completed, it was discovered that she relapsed and the cancer had returned.

“That meant she wasn’t eligible for the maintenance therapy study,” Brown said. “But instead of having to turn that child away with her disappointed mom, devastated with news that the neuroblastoma had returned, we had another protocol that is a treatment for relapsed neuroblastoma. If we didn’t have that portfolio of clinical studies ready, she would have had to leave and go somewhere else.”

In this case, the study is a personalized – or precision – medicine study. The tumor’s DNA and RNA are extracted from a piece of the tumor and are analyzed and compared against normal tissues in the body and other cancer type cells.

“Therapies are based on how the same tumor types typically react to treatment,” Brown said. “But each tumor is individual, and if the person has relapsed, we already know it isn’t reacting like a typical tumor. By analyzing the patient’s individual tumor, we try to find out what differences are making it react differently, and then we decide what we think will be the best difference to target for treatment.”

These results are then compared and prioritized by a computer program against a panel of about 200 agents – some of which are alternative like the spice curcumin, which is known to be active against cancers.

Those reports are then sent to primary investigators at the centers across the country that participate in the consortium. People are assigned to review the case and come up with a treatment plan based upon these reports, which is then discussed virtually through a tumor board.

“That day, as badly as I felt for that poor mom and child because she relapsed, I turned to our medical director and I said, ‘this is why we set up our program like we have. This is the vision we had, and it is benefitting our patients,’” Brown said.

Including studies in the Children’s Oncology Group, there are currently up to 40 trials available, with around 10 being early phase trials. Patients have travelled from nearby states to participate in the studies.

“People are coming from other states because the treatment options are not available there,” Brown said. “By word of mouth, and on social media from the parents, people have recognized that we are offering things that nobody is offering nearby.”

She continues to look for opportunities to connect Penn State Hershey doctors and scientists with peers at other institutions. She also actively looks for opportunities to move Penn State Hershey research in the laboratories into clinical trials through the consortiums.

“These parents are coming to us and are really at the end of the rope for their children,” Brown said. “You could offer, ‘I read a paper and they tried this and maybe…’ but the science side of me just can’t let that happen. We have to do this in a systematic way because we really want to make sure what we treat our children with is effective and not hurting them more. That can only be done in the context of studies and trials.”

All of this would not be possible without the support of Four Diamonds and the Penn State students who work hard throughout the year raising funds through THON.

“It takes time. It takes money. It takes resources,” Brown said. “Luckily I have a lot of those things here that I didn’t have at other places. Without the Four Diamonds’ backing, and its recognition of the importance of having an early phase program, none of this could happen and I wouldn’t be here. The money, in my opinion, has been well spent because even if these children don’t have the outcomes we want, we are contributing to the wealth of knowledge, and hopefully pushing it along so that the next child who walks through the door won’t have to go through a relapse or undergo such intense treatments.”

February 19, 2015 at 12:02 pm Leave a comment

Online resource gives childcare providers needed training

You’re a teacher in a preschool classroom of 4-year-olds. You interact with children, parents and support staff on a daily basis. You are concerned that a child may be being abused. How can you be sure if there is enough to constitute reasonable suspicion? What do you do about it? How do you handle resistance from colleagues?

ILookOutForAbuseOptionNRA new, free, online training module created by Dr. Benjamin Levi, director of Penn State Hershey’s Center for the Protection of Children, takes childcare providers and employees of daycare centers through an interactive, story-based program that gives them the experiential learning they need to more accurately identify and report suspected abuse.

The module launched just in time to help childcare providers comply with a Pennsylvania law that went into effect at the beginning of the year requiring completion of three hours of training on the subject.

Levi has spent 12 years researching reasonable suspicion, and 2 1/2 years creating the interactive training course to engage those who are often most likely to encounter the signs and symptoms of abuse.

“Three out of four children who die from child abuse are younger than 5, yet childcare providers have one of the lowest reporting rates of all mandated reporters,” Levi said. “And yet they serve the most vulnerable population.”

The training at iLookOutForChildAbuse.com begins with a 10-minute pre-test, followed by the 90-minute, story-based experience and a 10-minute post-test. It also includes handouts and post-training resources. Participants must stop to answer questions, make decisions and render judgments along the way, just as they would in real life.

“It’s not just information delivery,” Levi said. “It’s about helping people connect and see their own role in it all.”

(more…)

February 17, 2015 at 10:36 am Leave a comment

Heart surgeons give care from the heart

When doctors in Uganda told Shamim Nanukose that her 4-year-old son, Edwin Mugerwa, had a hole in his heart they couldn’t fix, she was horrified. She cried, asked questions the doctors couldn’t answer, and refused to leave without a promise that they would look for help.

Not far away, in another district of eastern Uganda, Jannat Mukwana was likewise terrified when she got a similar diagnosis for her son, Nuashad Muwaya, not yet a year old.

Because there are so few doctors and so many who need care in her home country, the attention given to each patient is minimal, Shamim said, through an interpreter. She knew her son had a heart condition, but she didn’t understand exactly what was going on or what the options were: “It leaves you much more confused.”

Eventually, both mothers got help from Children’s Heart Project, a program of international Christian relief organization Samaritan’s Purse, which has brought more than 960 children to North America to receive life-saving heart surgery and treatment since 1997.

At the end of August, Children’s Heart Project paid for the boys and their mothers to travel to Penn State Hershey Children’s Hospital with an interpreter and identified a volunteer host family with the help of the First United Methodist Church in Hershey. (more…)

November 14, 2013 at 3:10 pm Leave a comment

Window-washing crew makes a Monday ‘super’ for Penn State Hershey Children’s Hospital patients

It was just after 10 a.m. and Penn State Hershey Children’s Hospital was abuzz with excited shrieks and giggles as children of all ages were celebrating “Superhero Monday.” They waited on the edge of their seats, looking out the window, anxiously asking, “What time is it now, Mommy?” Finally, the much-anticipated superheroes rappelled down the side of the building.

“They’re real! They’re real!” exclaimed one little boy from the lawn below.

“Did you see that?! That’s crazy!” another said with a giggle.

Up on the fourth floor of the Children’s Hospital, children and their families crowded the windows, giving high-fives and fist-bumps to Superman, Batman, Spiderman, and Captain America through the glass. The room was filled with shouts of “I see him…! “Spiderman!” “Batman!” “Whoa!”

For Chloe, a Hershey resident visiting her brother, Batman was her favorite. “I gave him a fist-bump!” she said with a grin.

Jackson, from Fairfield, Pa., was ecstatic to fist-bump all four of the superheroes. “Fist-bumps are better than high-fives,” he explained. “I gave Spiderman, Batman, Captain America, and Superman all fist-bumps!” As the four superheroes descended to the floors below, Jackson rushed outside with his mom to meet them on the lawn. He even made it back inside in time to see the four rappel down the side of the building for a second time. This time he was ready to snap a picture. (more…)

July 23, 2013 at 3:06 pm 11 comments

Girl’s quick action credited with brother’s survival

Amy Bair says she owes her son’s life to the actions of her daughter – and medical personnel agree.On the afternoon of June 15, nine-year-old Carrie Bair walked out to their family’s pool to find her young brother, Jackson, lying face-down in the water. He appeared unresponsive. Carrie pulled the three-year-old from the water by the back of his shirt.

“I tried to talk to him, but he didn’t talk,” Carrie said. That’s when she wrapped her arms around her brother’s body and squeezed him. Within seconds, Jackson coughed up water and started breathing again. Carrie beckoned to her mom, Amy, who called 911 then rushed to her son’s side.

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June 20, 2013 at 7:23 am Leave a comment

Teddy Bear adoptions provide opportunities to clear up hospital misconceptions with kids

Children learned how to properly swaddle their new teddy bears

Children learned how to properly swaddle their new teddy bears

Penny is a small, fuzzy gray bear with deep brown eyes who wears pink overalls with heart-shaped buttons. She has a floppy hat with an equally pink flower. Her first memory was waking up at Penn State Hershey Children’s Hospital nestled among her other bear and animal friends who were available for adoption at the Teddy Bear Clinic at Penn State Hershey Children’s Hospital.

Penny and her friends were in Hershey to celebrate Child Life week and to help the Child Life specialists talk to the children about their fears of hospitals and going to the doctor. Child Life specialist Carrie Myers, who organized the event, works in the emergency department and sees scared little patients all the time.

“This is a time when we, as Child Life Specialists and other medical professionals can address misconceptions children have about the hospital or medical procedures,” she said. “It also teaches them that the hospital can be a fun, safe place.”

Clara and Laura Wade (ages 3 and 1) from Williamsport, Pa, whose new baby brother was born with a ‘broken’ heart that the doctors needed to fix, took home two of Penny’s friends, Bear and Dog. The girls listened to their new friends’ heartbeats and took their temperatures as they visited the stations where nurses and therapists helped them give their bears checkups. They saw many of the same instruments that the staff uses when taking care of 14-day-old Timothy after his open heart surgery. Their dad, Martin, hoped the experience would help the girls understand their brother’s surgery and recovery. “I told them baby brother’s heart was broken and had to be fixed,” he said. “I think this will help them when he’s getting poked and prodded, to know that It’s all to make him healthy, not hurt him.”

(more…)

April 2, 2013 at 2:13 pm 2 comments

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