November 21, 2017

On November 9, Child Life held a special event to dedicate a new art studio in the Zone for patients and their families. Texas Children’s Hospital is grateful for the generosity of Harrison’s Heroes, a local organization that will fund the art studio.

Harrison’s Heroes Art Studio will be an intimate space for patients and their families to come together and create special moments and various pieces of art. It will serve as a positive outlet and space for patients to share their feelings, perspective and build their legacy. As these patients are going through a difficult illness, the studio will offer a special time for bonding and expression for the entire family.

“We want to give our patients an opportunity to feel normal throughout their hospital experience but to also give them an avenue to tell their story by creating paintings, videos, stories, quilts and other forms of art,” said Child Life Manager Diane Kaulen. “For patients who are isolated in their room due to their illness, Harrison’s Heroes has donated mobile art carts that bring the elements of the art studio to the bedside.”

The space will be staffed by Texas Children’s child life specialists who provide developmental, educational and therapeutic interventions for children undergoing medical treatment. Child life services help children effectively cope with a diagnosis, treatment or hospital stay and provide emotional and psychosocial interventions to hospitalized children based on individual needs.

Harrison’s Heroes was named in memory of Shanoop Kothari’s son, Harrison, who passed away from his illness at the age of 2.

Click here to watch a KPRC video about Harrison’s Heroes and the new art studio at Texas Children’s Hospital, which is scheduled to open in January 2018.

November 14, 2017

For more than a decade, the Purple Songs Can Fly recording studio at Main Campus has offered a place for cancer patients and patients with blood disorders to express how they feel about their disease and the treatments they are undergoing to battle it. Siblings of such patients also are able to use the studio.

Thousands of songs have been written and produced in the colorful space sandwiched between clinic rooms on the 14th floor of the Texas Children’s Cancer and Hematology Centers. Now, a similar space is available to cancer and hematology patients cared for at Texas Children’s Hospital West Campus.

“Today, we’ve cut the ribbon on our second Purple Songs Can Fly recording studio,” said Purple Songs Can Fly Founder and Executive Director Anita Kruse. “We’ve had a studio at Main Campus since 2006 and now we’ve opened one at West Campus.”

Thanks to support from the Texas Commission on the Arts and the Children’s Fund, Kruse has been coming out to West Campus for two years with a portable recording studio, working with patients at their bedside, in clinic rooms or conference rooms to write and produce nearly 100 songs.

“This pilot project proved that a permanent recording studio would be a viable investment at West Campus, Kruse said. “The children were really excited about writing songs here. I feel that the studio and the songs that will be written at West Campus will bring a lot of joy to the families and the children who are here undergoing treatment.”

West Campus Texas Children’s Cancer and Hematology Centers Nurse Manager Judy Holloway said the transformation and the impact that Purple Songs Can Fly has on patients, families and staff is remarkable.

“We see miracles happen in the Cancer and Hematology Centers here at West Campus and this studio is a miracle in itself,” Holloway said. “A lot of our children are very sick. Having this available to them here at West Campus is a true blessing.”

Annalisa Cuano, a singer, songwriter and highly trained sound engineer, will manage the recording studio at West Campus. She has been working with Purple Songs Can Fly for two years at Main Campus and has recently spent a lot of her time at West Campus getting the studio ready for its official opening.

“The goal is to get these children out of their heads and able to share who they are and what they are going through in the purple space,” Cuano said. “It’s really incredible to watch. There’s some kind of self-fulfillment or self-validation when you give them their CD.”

Kruse said she is grateful to everyone at Texas Children’s who has helped make the West Campus studio become a reality and is thankful for the funds she received to build and staff the studio. Texas Children’s West Campus Child Life Department supported the build out of the space to prepare it for construction and grants from the Children’s Fund provided funding for the construction of the studio, paid for all of the equipment inside the studio and helped staff the studio for a year.

Carol Herron, coordinator of the Periwinkle Arts In Medicine Program, said she looks forward to hearing the music and seeing the smiles on the faces of the composers at the West Campus Purple Songs Can Fly studio.

“What you do makes a difference in the day of a child undergoing treatment of a serious disease,” Herron said to those involved in Purple Songs Can Fly. “Thank you for the gift you give to these families.”

Texas Children’s has touched clinical social worker Melanie Pearson on many levels. The organization has given her the job of her dreams. More importantly, the organization and its staff saved the lives of her two sons.

Shortly after delivering her oldest son at Texas Children’s Pavilion for Women, he was diagnosed with a heart condition. “How fortunate we were to be at one of the greatest teaching hospitals in the country,” Pearson said.

Pearson’s second son came only 14 and a half months later, a month before he was due. Shortly after birth, he was taken to the NICU and cared for by the hospital’s neonatology team. Pearson was only able to hold her newborn son for a few minutes before they had to be separated.

“Only a mother can understand that pain,” she said. “I would not have made it through without my amazing OBGYN and her team. She was the calm in the storm keeping my husband and I updated every step of the way and taking the time to listen and calm our fears.”

Both of Pearson’s sons are doing well today because of the care they received at Texas Children’s. As a result of that care, Pearson said she’s been searching for a way to give back and found it when she learned about the Chevron Houston Marathon’s Run for a Reason charity program.

Texas Children’s Hospital is an official charity for the Houston Marathon and Armaco Half Marathon, taking place on Sunday, January 14, 2018. The Run for a Reason program is a way for runners to run the race of their choice with a guaranteed entry – on behalf of a charity.

“Running for Texas Children’s Hospital is not just about the race, it’s a promise to our patients,” said Eric Blackwell, manager of special event for Texas Children’s. “By signing up to run and fundraise on behalf of Texas Children’s Hospital, your donations will directly impact the lives of countless children. Your race will become the race for our patients who are too sick – sometimes too sick even to play outside. Your support will allow us to expand our care to even more children who need our help.”

Pearson signed up to run the half marathon and said becoming a charity runner was the least she could do to in her effort to repay Texas Children’s for what the hospital has done for her and her family.

“I see it as a small way I can give back to a place that has given me and my family so much,” she said. “I am dedicating this race to the three most important men in my life. My husband and two sons. They are my rock and I wouldn’t be who I am today without them.”

To join Pearson and the Texas Children’s Running Team, click here. To help Pearson and others on the team meet their fundraising goal, click here. And, to volunteer to cheer these awesome runners on the day of the race, Sunday, January 14, click here.

Cheerleaders will be set up between miles 5 and 6, and a Texas Children’s Hospital tent will be stationed in the Bed Bath & Beyond parking lot at 3102 Kirby Drive between Richmond Avenue and West Alabama Street. Cheering begins at 7 a.m. until all runners pass the Texas Children’s tent. Snacks, sign-making materials and T-shirts will be provided to all individuals who sign up to volunteer.

On November 4, Texas Children’s Fetal Center held another successful reunion event at Texas Children’s Pavilion for Women. Families from around the country and internationally traveled to Houston to reconnect with Fetal Center physicians, nurse coordinators and staff.

Since the first event in 2007, the reunion has brought together patients and their families who received life-saving fetal interventions and fetal surgeries and has become a cherished experience for families and staff alike.

“Many of these families spend extended periods of time with the Texas Children’s Fetal Center staff and in our neonatal intensive care unit,” said Dr. Oluyinka Olutoye, co-director of Texas Children’s Fetal Center. “A bond is formed among our patient families and the team members that treat their children. These families trust us with the wellbeing of the most precious parts of their lives – their children. We don’t take the responsibility lightly, and we cherish the opportunity to see these children grow.”

Jeff and Margaret Boemer reunited with other patient families to celebrate the lives of these precious miracle babies that were cared for at Texas Children’s by our maternal fetal medicine and NICU staff.

“We are grateful to Texas Children’s and all of the doctors who gave us hope and didn’t let us give up on our baby,” said Boemer, whose daughter Lynlee underwent fetal surgery at Texas Children’s to remove a large tumor (sacrococcygeal teratoma) growing from her spine. “It is a joy to have our daughter with us every day and an honor to share Lynlee’s story with other moms going through similar circumstances.”

After recently celebrating their daughter’s one year birthday in June, Lynlee is doing remarkably well and continues to inspire and impress her parents and doctors. In fact, she reached a huge milestone – she started walking and loves to play games with her older siblings.

John and Elysse Mata also attended the fetal reunion celebration with their 3-year-old twin daughters Knatalye and Adeline, who spent 10 months being cared for in our neonatal intensive care unit before being successfully separated in a 24-hour operation on February 17, 2015, at Texas Children’s Hospital.

Stay tuned to Connect for an upcoming article on the Mata twins’ remarkable progress since their historic separation surgery nearly three years ago.

As we wrap up our Caught You Caring series on Connect, we share one more inspiring story of a Texas Children’s employee who demonstrates what it means to go above and beyond for her patients and their families.

For nearly eight years, Amanda Riddle has found it her life’s passion to take care of sick children. As a neurology nurse in the Epilepsy Monitoring Unit, she makes sure her patients have the best possible experience during their hospital stay as many of them are sometimes here for several months on the unit.

“I nominated Amanda for the Caught You Caring award because she truly embodies a caregiver,” said Elizabeth Davis, patient care manager in Neurology. “She lives the values and demonstrates true advocacy and empathy for patients, families and staff. She always greets patients and their families to see if they are having a great experience during their hospital stay, and she is willing to support her colleagues when they need a helping hand.”

Recently, Amanda noticed that one of the floor’s newer nurses was struggling with her current patient load. Amanda rushed in to help by performing blood draws and handling lab work so that her colleague could focus on her other patients with more urgent needs.

Her colleagues on the unit describe Amanda as a coworker who has a “passion for the work that she does which is impossible to miss. Whenever Amanda is on the unit, she will not let you be in the trenches alone.”

Launched in 2015, Texas Children’s Caught You Caring program is a systemwide program that recognizes employees for going above and beyond to provide compassion and kindness in the care of a patient, family or co-worker. Recently, Riddle was among more than a dozen employees who received a pair of tickets to watch the Houston Texans Play 60 game on October 1, after being recognized for his acts of kindness through this program.

Texas Children’s wants to continue to recognize those who take great pride in the work they do and encourages patients, families and employees to catch someone who is making a difference.

To nominate a colleague, Caught You Caring boxes and cards can be found across the Texas Children’s hospital system for patients and families to fill out. Employees can fill out a staff recognition.

For the past four weeks, Connect featured a series of Caught You Caring videos spotlighting several of our employees who have gone above and beyond their role in the care of our patients and their families.

In case you missed it, click on the links below to view the rest of the series.

Heather Eppleheimer
Joyce Enochs
Keith Thomas
Donald Wilkins

The Texas Children’s Cancer and Hematology Centers recently held its 2017 Annual Advanced Practice Provider (APP) Education and Team Building Symposium.

The Cancer and Hematology Centers’ APP team consists of 25 APPs on 10 different disease teams.

The annual symposium provides an opportunity for professional development and collaboration across teams.

Presentations included:

  • Dr. Rona Sonabend on “Endocrinopathies in Children with Cancer”
  • Dr. Amanda Berger on “Pain and Pain Management in Children with Cancer”
  • Pat Wills Bagnato on “Mentorship Relationships”

There also was a teleconference call with the Association of Pediatric Hematology Oncology Nurses (APHON®) on their Mentorship Program.

Texas Children’s Pediatric and Adolescent Gynecology Division was recently awarded an NIH Small Business Innovation Research grant via Biotex Inc. to develop vaginal stents that will help vaginal reconstructive patients heal.

The most common complication after vaginal reconstruction is restenosis and scar tissue formation, which can occur in up to 73 percent of patients. As many as 50,000 girls a year and 213,000 women could benefit from postoperative treatment using newly designed vaginal stents.

There currently are no vaginal stents on the market for the pediatric population, forcing physicians to use makeshift devices fashioned from surgical gloves or other materials. “Therefore, there is a tremendous need to help these patients and their physicians with a simple device that can truly improve their quality of life beyond even the surgery,” said Texas Children’s pediatric and adolescent gynecologist Dr. Julie Hakim.

“In creating the first vaginal stent specifically designed to address the anatomic needs of the pediatric and adolescent populations, we aim to reduce early discontinuation of stent postoperatively and improve postsurgical outcomes,” she said.

Phase I testing is ongoing and submission for a grant for a Phase II clinical trial is anticipated to occur in April.