Giving Back to The Hospital That Gave A Family So Much

Guest Blog By: Deb Montgomery, University of Maryland Children’s Hospital Parent

My daughter, Neriah, has had many varied health issues over the course of her childhood, including severe asthma, allergies, gastrointenstinal issues, and more. We have been blessed to have her under the care of several of the doctors in the Pediatric Specialty Clinic at the University of Maryland Childnre’s Hospital (UMCH). During the past several years, we’ve been through a multitude of appointments, testing, and hospitalizations.

As you can imagine, this has been really hard, and especially heartbreaking to see all that our little girl had to endure. Good care from doctors and nurses helped, but it was hard to keep positive and distract our sweet girl from all of the pain and discomfort. In some of the toughest medical tests and hospitalizations, we were introduced to the Child Life program.

Through that, she was given some toys and crafts to keep her busy, and distract her a bit from what was going on. It was such a help to have someone else “on our side”, trying to make the whole hospital ordeal a more positive experience for our little girl! When she got home from different times in the hospital, she would show her sisters some crafts that she made, or little presents she got to keep. She never told stories about the hard stuff, but she focused on those fun, positive memories! We really appreciate the positive memories that she has of the hospital, through the Child Life program.

It’s because of that, that we would like to help more children in the hospital to go home with some positive memories! We know how much it means to get some help at some of the hardest times. Our little girl loves to read, and we are having a book drive to raise money to buy Usborne books and more for the Child Life program to give to kids at UMCH. Usborne books are really engaging and interactive, and would really help to bring some joy to a child in the hospital. Usborne will match your donation at 50%, so we’ll be able to get even more books to the children! Click through the link below to donate to the fundraiser, to take part in giving some wonderful books to children in the hospital at UMCH!
Click here to support Provide books to children in the hospital at UMCH

Going Above and Beyond to Ease the Stress of Blood & Marrow Transplant Patients

The facility where the stem cells are stored.

The Blood and Marrow Transplant unit at the University of Maryland Medical Center was presented with a challenge in housing recovering cancer patients at the beginning of March 2017. Usually, UMMC and the BMT unit use The American Cancer Society’s Hope Lodge to provide temporary housing for out-of-town BMT patients recovering from stem cell transplants. However, building construction began across the street from the Hope Lodge, making it unsafe for recovering BMT patients to stay there. Recovering from a stem cell transplant can be physically challenging, and construction debris and dirt could compromise patients’ recuperating immune systems, impeding the healing process.

This left Majbritt Jensen, a social worker at UMMC who oversees the psycho-social aspects of BMT treatment and recovery, concerned for her recovering cancer patients. Out-of-town patients must stay within an hour of UMMC to ensure that their recovery from their stem cell transplant was successful. Without discounted housing from the Hope Lodge, these patients would need to stay at a local hotel for at least 100 days. Not all insurance policies cover lodging expenses, meaning that many patients and their caretakers would be financially responsible. Jensen and her team knew that adding a financial burden to the patients and their families during this time could complicate and stress their recovery. So Jensen, along with Bob Mitchell, Associate Director for Administration, and Stan Whitbey, Vice President of Cancer Services, searched for a solution.

The solution they found was a generous grant from the Meizlesh Memorial Fund. This grant ensures that BMT patients can be housed at hotels in close proximity to UMMC. This will make it easier for the patients to be monitored during their recovery and visit the hospital if they experience any complications. Jensen attributes the success of receiving the grant money to the hard-working team surrounding her and the patients who inspire her.

“Everyone in our unit values life and treats everyone so kindly,” says Jensen. “And, I love being there for the patients and seeing them get well. Every day I am reminded of what really matters.”

Jensen also runs a support group that aims to connect current BMT patients with those who are in recovery.

For more information, visit the Bone and Marrow Transplant Service at UMGCCC.

Child Life Month

How Play is Helping UMMC’s Youngest Patients

By: Colleen Schmidt, System Communications Intern

As many parents know, the hospital can be a scary and unfamiliar place for a child. To help relax these fears, UMMC’s team of child life specialists and assistants use a variety of techniques to help children adjust to the hospital setting. Child life specialists, or CLS, aim to provide a positive and non-traumatic hospital experience for all patients at the University of Maryland Children’s Hospital.  UMMC’s Child Life team consists of six CLS and two assistants. They work in the Pediatric Progressive Care Unit (PPCU), Pediatric Intensive Care Unit (PICU) and the Pediatric ER.

Members of the Child Life Team

 

Play is one technique often used by child life team to help normalize the child’s hospital experience.  Various types of play are thoughtfully used to help children meet developmental milestones, express emotions, and understand their medical situation.  For example, during a practice called medical play, a CLS will provide their patient with a “hospital buddy” or small doll that the child can decorate. Next, with the guidance of a CLS, the child is introduced to medical equipment that they can explore and use on their new hospital buddy.  According to Aubrey Donley, a CLS at the pediatric ER, medical play is helpful in addressing misconceptions the child has about medical equipment.

“It gives them a sense of control and mastery over their hospital experience and over what they’ve been through,” she explains. Medical play empowers patients and allows them to have an active role in their hospitalization. Helping the children understand their environment lessens the chances of confusing or traumatizing them.

In addition to medical play, the child life team uses therapeutic play to help children work through a variety of issues that may accompany hospitalization. Sometimes, children who are hospitalized have experienced severe trauma. Unlike adults, children may not be able to verbalize their feelings. Play is how they express themselves and work through their experiences. For instance, one of Donley’s young patients survived a house fire and used play to understand what happened to him. “He was running around in a fireman costume pretending to put out a fire. For an onlooker, it might seem like he was just playing but we understand he is trying to make sense of the chaos and trauma that he had witnessed,” she explained. Therapeutic play can also help children who are at the hospital for long periods of time meet their physical and cognitive milestones.

With backgrounds in child development, the child life team is able to make individual plans for each child that matches their medical, physical, and emotional needs.  The team advocates for the children they support, and work with an interdisciplinary team of medical professionals to provide a comprehensive plan for that child. Child life specialists also provide educational and emotional support for families. All services provided by the child life team come at no charge to families.


For more information on our child life services please visit: http://umm.edu/programs/childrens/services/inpatient/child-life

Occupational Therapist Brings Holiday Cheer to NICU with Photo Shoot

img_9300-3Just before the holiday season, Lisa Glass, an occupational therapist in The Drs. Rouben and Violet Jiji Neonatal Intensive Care Unit (NICU) set up a Christmas photo shoot to show off the festive side of some of our tiniest patients.

Glass, who enjoys photography in her spare time, developed the idea for the photo-shoot as a “cute way to give some nice holiday photos to parents”. Since NICU babies are often among the sickest children in the hospital, and need round the clock medical care, it can be difficult for parents to appreciate the traditional joys of having a newborn. Especially during the first few critical months of life, this can include newborn pictures. Glass and her coworkers wanted to be able to “highlight how beautiful [these] babies are,” and give parents a view of their child in a more upbeat and positive light.

img_9142-3After work hours, Glass and two physical therapy coworkers in the University of Maryland Department of Rehabilitation Services, Laura Evans and Carly Funk, went from room to room, and for four and a half hours, photographed over 30 babies. Following the photography session, Glass edited her pictures, emailed them to parents, and even printed a few copies to surprise parents in their babies’ rooms. Following the photo shoot, she received many happy emails thanking her for what she had done. But for Glass, going above and beyond to show compassion and joy was an easy feat.

“For me, it was a pleasure to interact with the babies and the parents”, said Glass. “Parents are used to seeing their children as sick patients, not as beautiful babies. It’s important to see your patients not just as patients, but as people, too.”

Glass also emphasized the importance of teamwork in this endeavor.

“I wouldn’t have been able to do this without [Laura and Carly’s] help the whole way through.” This NICU trio showcases the importance of working together to bring some extra joy to UMMC.

Glass’ photography serves as a great reminder to see patients as the people they are, and not simply for the medical treatment they are receiving. Although these babies may have breathing tubes and cords surrounding them, they are also enveloped in a multitude of love and support.

trilpets-single-photos



Living with Mesothelioma: A New Normal

In December of 2007, Timonium resident Jen Blair was pregnant with her second son, Kevin. It was a “very painful pregnancy.” She went to a few doctors, who told her the pain was normal. The pain returned, “worse than ever,” six weeks after giving birth to Kevin.  More doctors. More tests. She was first told she needed laparoscopic surgery, then that she had stage 4 cancer in her abdomen. She was told to get her affairs in order.

It turns out Jen had peritoneal (in the abdomen) mesothelioma, in which cancer cells are found in the membranes around organs in the abdomen. This is very rare — only about 350-500 cases are diagnosed annually in the US – and the five-year survival rate is just 16 percent.

“It was overwhelming,” Blair said.

Now that she knew what she was up against, it was time to find a doctor.
Her brother did an Internet search of the best Mesothelioma doctors, and up popped H. Richard Alexander, MD, an internationally recognized surgical oncologist and clinical researcher at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center (UMGCCC). UMGCCC is only a half hour from her house, but Blair said her choice had much more to do than travel time from home.

“Dr. Alexander’s team was incredibly supportive,” Blair said. “When I called with literally dozens of questions, some of which, thinking back now, were ridiculous, they always took time to give me an answer. That really impressed me.”
Just a week after calling UMGCCC about her condition, Blair met with Dr. Alexander.  After an examination, Dr. Alexander told Blair that she was a candidate for surgery. For surgery to be an option in  treating mesothelioma, it has to be considered a safe operation, and the disease has to be confined to one area. Blair decided to have surgery.

“That one decision changes everything for a patient,” Blair said.  “Not all doctors specializing in mesothelioma have the patient’s best interest at heart.”

Many doctors, Blair said, are motivated by money.  She said she’s heard horror stories from other mesothelioma patients, where doctors demanded an upfront sum of money—sometimes adding up to hundreds of thousands of dollars—before operating.  But not at UMGCCC.

In March 2008, Dr. Alexander performed surgery with HIPEC (hyperthermic intraperitoneal chemotherapy), which uses heated chemotherapy in combination with surgery to treat cancers that have spread to the abdomen lining.  While surgery to treat mesothelioma isn’t a cure, Jen’s quality and quantity of life have been greatly improved.

Blair was virtually pain free for more than seven years after the surgery, and was able to spend time with her family, and watch her two sons, Kevin and Nick, as they grew up. She had a second surgery with HIPEC in March 2015, and more than a year later, suffers very few episodes of pain.

While the days are still hard and life won’t ever be normal, Jen says it’s a huge relief having Dr. Alexander and his team in her corner.

“Dr. Alexander is hopeful, but realistic,” Blair said. “That’s important.”

Jen now works as a volunteer at UMGCCC, comforting and supporting other patients going through the same things as her.  She also works closely with the Mesothelioma Applied Research Foundation, which is a non-profit “dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.”

Learn more about the Mesothelioma and Thoracic Oncology Treatment Center at the University of Maryland Marlene and Stewart Greenebaum Comprehensive Center by clicking here.

Taking Treatment & a Half Marathon, Together, One Step at A Time

The relationship between a cancer patient and their care provider is a special one.  Between radiation therapy appointments, hours of chemotherapy, and even sometimes surgery and recovery, there’s not much that can strengthen this bond, besides running a half marathon.

Dana and Tiffani

But Tiffani Tyer, a nurse practitioner in Radiation Oncology at the University of Maryland Greenebaum Comprehensive Cancer Center (UMGCCC), and Dana Deighton’s journey started long before this year’s Maryland Half Marathon & 5K.

About 3 years ago Dana was diagnosed with stage IV esophageal cancer.  At 43 years old with 3 young children, it was, in Dana’s words, “unfathomable.” She traveled up and down the East Coast looking for a treatment plan that would give her the most hope. Many acted like she was naïve and unrealistic for even seeking out treatments beyond palliative chemotherapy.

After much deliberation, Dana settled on a plan of 8 cycles of chemotherapy at one local hospital. During this treatment, a friend introduced Dana to Mohan Suntha, MD, a radiation oncologist at UMGCCC.

Within an hour of getting Dana’s information, Dr. Suntha gave her a call. While he agreed the appropriate preliminary step was chemotherapy, he did not close the door on her like many others.  Dr. Suntha and Dana continued to check in with each other throughout her chemotherapy treatments to see how things were going.

In December 2013, after Dana finished chemotherapy, she learned she would not be considered for radiation or surgery by the hospital where she was initially treated. She was told that the data did not support it. She was devastated. Dana returned to UMGCCC, where Dr. Suntha and Tiffani were always willing to reassess her situation and provide guidance when obstacles seemed insurmountable.  Knowing that every case is different, he agreed to reevaluate her.

tiffani dana and dr sunthaAfter careful consideration and determining that her distant disease had indeed resolved, he offered her local treatment with chemotherapy and radiation targeting the primary site in her esophagus.  While the local treatment helped, the primary site still showed evidence of persistent disease at the end of her treatment.  To try to avoid major thoracic surgery, an endoscopic mucosal resection was attempted, but was unfortunately unsuccessful. Dana was again devastated. She felt like it was just another blow to her journey to health and she was running out of options.

Dr. Suntha and Tiffani encouraged Dana to stay hopeful. They agreed along with many other providers that indeed she was in a difficult position. After many tumor board discussions and repeat imaging studies to confirm her extent of local disease thoracic surgeon Whitney Burrows, MD, was consulted. He discussed surgical salvage to address her only site of cancer.  Albeit risky, with no guarantee of a survival benefit, it was her only remaining local treatment option.  Recognized as a long shot with a real possibility of acute complications related to such a long and complicated surgery, she willingly consented to undergo the esophagectomy. From Dana’s view the benefit far outweighed the risk. She believed in her team and her surgeon, whose expertise is well established in post chemoradiation patients. It proved to be a good choice and offered a huge reward.  Dana recovered well and was cancer free and feeling great–until July 2015.

It was then that a routine interval scan revealed a new lymph node mass in her Axilla (near the armpit) was biopsied and confirmed to be recurrent esophageal cancer.  Dana had resigned herself to more draining rounds of chemotherapy after another surgery could not remove all of the cancer.  But again, Dr. Suntha, Tiffani, and medical oncologist, Dan Zandberg, MD, always made sure all options were presented and considered.

tiffani zandberg and sunthaDana’s case was represented to  their colleagues at a tumor board meeting on the Friday before she was supposed to start chemotherapy.  Drs. Suntha and  Zandberg called her that evening to  recommend  immunotherapy, which harnesses the power of a  patient’s immune system to fight cancer.  After a sleepless night, Dana agreed.   She now receives treatments of Nivolumab every 2 weeks for at least a year.

Dr. Suntha has always recognized that there’s something unusual about Dana’s case, and has often asked, “Is there something different about her biology? We don’t know.”

Dr. Suntha, he also believes that Dana’s strong will and clear ability to advocate for herself has facilitated part of the success of her care.

dana and tiffaniThroughout these three years, Dana describes herself as lucky enough to continue her usual regimen of walking, running, and exercising consistently.  She donated money to the Maryland Half Marathon & 5K to fund cancer research in the past, but feeling much healthier and up to a new challenge, she promised to run it in 2016. She has always ran 10 milers in her hometown of Alexandria, Virginia, but knew those 3 extra miles of hills in the Half Marathon would be challenging.
Despite her reservations, in a partnership with Tiffani, the Radiation Oncology Greene Street Dream Team was born. On May 14th, Tiffani and Dana ran the entire race together (even though, according to Dana, Tiffani could’ve run circles around her).  To date, they’ve raised more than $10,000. They’ve taken every step together in cancer treatment and every step in the half marathon & 5K – a true bond that will continue.

Fundraising for the Maryland Half Marathon and 5K that supports this Radiation Oncology Dream Team and their patients continues until June 30th.

You can donate to Tiffani & Dana’s team here.

Great Moments from Great Stories

By: Adrian Rabin and Michelle Logan, Editorial Interns

A written letter conveys a certain kind of emotional power. Throughout the year, former patients and their families take the time to thank their UMMC care providers through personal notes and emails. The Employee Engagement Team, part of UMMC’s Commitment to Excellence (C2X) staff, selects a few such letters to recognize our employees in an event known as Great Stories.

On June 30, we welcomed back three individuals — a patient, a family member and a friend of a patient — who spoke about the excellent standard of care they received and the compassionate staff they came in contact with.

Treatment teams were reunited with their patients, and through tears and laughter, the patients, families and friends had the opportunity to express their gratitude and show how well they were progressing.

Below are excerpts from the letters:

Great Service: excerpts from Tessa Abate’s letter

Barrett Quick Great StoriesA close friend of mine was admitted to the Bone Marrow unit on Gudelsky 9 for what we hope will be her chance for a remission for her disease. Early last week, she was required to leave the unit for an X-ray. This, for her, was very scary because of her risk for infection. I was on the unit visiting at the time, and had the pleasure to meet Shawn Quick, who arrived to transport her. I was able to share with him her level of anxiety and concern before he organized her to go to X-ray. To say he was a breath of sunshine is to understate the impact he had on Jennifer. He was cheery, organized and extraordinarily personable. As he chatted to her on the way to X-ray, I saw her anxiety visibly diminish. He responded to her questions in such an upbeat manner; her confidence regarding being in good hands was evident.

The impression Shawn left on us both is that we are so very lucky to have him taking care of our patients. We are also so fortunate to have (Sean Barrett) in charge of this very important service for our patients. I am sure he has a very difficult job, but you would never know it from his attitude. The experience we both had that day made a difference, and his compassion and personal touch were so very much appreciated. Thank you.

 

Great Dedication: Excerpts from Scott Goodstein’s letter

Goodstein Great StoriesAs a patient of UMMC Shock Trauma from multiple injuries sustained in a motorcycle accident in April 2013, I got to know your staff, and a few stuck out that went above and beyond. Dr. [Jason] Nascone’s entire team in the outpatient pavilion are all class acts, and are some of the most dedicated individuals I have ever met. All of the nurses and assistants were dedicated and understanding.

When I look back at my healing process and many visits over the last year and a half, one employee of the outpatient facility really stood out. Ms. Annie Williams kindly helped me through many stages of X-rays from the early days when it was hard to get on the X-ray table, to the much later and easier process. She was polite, professional and truly empathetic. She remembered me between visits and gave me words of encouragement as I progressed. She had both a great sense of humor and a professional manner that made getting through painful positioning to take X-rays … bearable! Your team is clearly lucky to have such a dedicated employee on your staff!

 

Great Care: Excerpts from Enid Valentine’s letter

Enid Valentine Great StoriesOver the last three years, I have functioned as advocate and power of attorney for my husband, Gulf War Veteran Steven L. Valentine. Considering the full range of services that UMMC has to offer, it is refreshing to know that Steven has found the good fortune and dual advantage of having some of the most remarkable networks of reliable professionals to collaborate with his VA medical team. … I wish to acknowledge the many competent hands and unconditional support that my husband has received at UMMC. Over time, the combined investments of these fine individuals have become the binding force that I currently value and respect.

This success story truly captures the vision of good medicine, as Steven has now been given a clearer path to favorable beginnings. Apparently, UMMC has just what it takes to make life happen for those who need it the most. You don’t simply mend bodies; you heal families.

 

For more information on the Great Stories program, or to submit your own story, email GreatStories@umm.edu.

Zora Neale Hurston’s Lesson

By Anne Haddad

UMMC Publications Editor

Yesterday was the 123rd anniversary of the birth of Zora Neale Hurston, a prolific African-American writer, folklorist and anthropologist. Thank you, Google, for reminding us by making her the Google Doodle, which in turn reminded me of an essay by Hurston that’s as powerful as it is brief — “My Most Humiliating Jim Crow Experience.” The Literature & Medicine reading group at UMMC discussed it this spring.

We asked ourselves was why this was the most humiliating, when there must have been many humiliations during that era. One reason: People are never more vulnerable than when they trust a health care provider with their lives. Reading about such an extreme breach of trust was agonizing for the caregivers in the group, all of whom were passionate advocates for their patients.

Literature & Medicine is a program sponsored by the Maryland Humanities Council, and coordinated at UMMC by the Rev. Susan Carole Roy, DMin, BCC, director of pastoral care services. The guest facilitator this year was Howard Berkowitz, an English teacher at The Park School.

 

Compassion and Healing

The Greenebaum Compassion Award goes this winter to Lisa Mayo, a discharge coordinator, and Michelle “Shelle” Besche, BSN, OCN, CCRP, a research nurse coordinator. Read about why they were chosen from among the staff of the University of Maryland Marlene and Stewart Greenebaum Cancer Center — where everyone is known for compassionate care.

Therapeutic Music Program Helps Cancer Patients

By Sharon Boston

Media Relations Manager

Music and sound, such as a happy song on the radio or the frightening score of a scary movie, have the ability to change our moods. Many people have a physical and emotional connection to sound, and scientific research has shown that music can be beneficial in healing.

Now, through a grant from the Gabrielle’s Angel Foundation for Cancer Research, the University of Maryland Medical Center is offering live therapeutic music to patients receiving treatment at the Greenebaum Cancer Center.

Therapeutic musician Terri Fevang plays keyboard pieces tailored to each patient’s mood or emotions, so each visit is different. Some patients may be anxious while awaiting test results, while others may be tired after receiving chemotherapy or radiation.

“The music is peaceful and calming, and takes my mind off my pain and worries,” says Jessica Montgomery, a 29-year-old leukemia patient. “When Terri comes in, we turn the TV off and just listen to her play. My dad is usually there too, and he often falls asleep because it’s so relaxing.”

The live therapeutic music program is part of the Medical Center’s Integrative Care team, which offers treatments such as acupressure, guided imagery and yoga breathing to patients throughout the hospital, including the Shock Trauma Center.  The goal is to help patients relax, optimizing health and healing.

Terri playingThe Gabrielle’s Angel Foundation grant also allows researchers from the University of Maryland School of Medicine to study the potential benefits of live therapeutic music for these cancer patients. The grant will fund a pilot study to see if the therapy can affect patients’ anxiety, mood and quality of life as well as some physical indicators such as pulse oximetry, which measures the pulse and oxygen in the blood.

“We have received a great deal of positive feedback from patients about the music program. Now we want to see if the data supports this encouraging anecdotal evidence,” explains Chris D’Adamo, PhD, director of research at the University of Maryland Center for Integrative Medicine, which is part of the University of Maryland School of Medicine.

If the pilot program with 30 patients is successful, researchers hope to launch a larger study on the benefits of therapeutic music.

 Click here to see a WBAL-TV story about the live therapeutic music story.