November 21, 2017

Six-year-old Molly Malinsky and her parents have a lot to be grateful for this holiday season. After their daughter was diagnosed with a seizure disorder at four months old, Molly is now seizure free, a miraculous outcome that her family credits to Texas Children’s world-class neuroscience team.

When the Malinskys learned that their daughter’s physician Dr. James Riviello – who had treated Molly since she was four months old – joined Texas Children’s as the associate section head for Epilepsy, Neurophysiology and Neocritical Care, it was a no brainer for the New Jersey family to travel to Houston to reunite with Riviello.

“Dr. Riviello is one of those amazing doctors who is not only knowledgeable, well respected and professional, but above all, cares deeply about his patients and their families,” Rebecca Malinsky said. “We followed Dr. Riviello from NYU to Columbia and now to Texas Children’s so our daughter would continue to receive the best care.”

When Molly was first diagnosed with epilepsy, she was prescribed seizure medication which seemed to work. Molly had no seizures for over a year, but when she was weaned off of her medication, Molly’s seizures returned. “The seizures were getting worse and more frequent,” Malinsky said. “My daughter would have 15 seizures in an hour and three to five seizures at school even when she was back on her medication, which was very scary.”

After five failed medication trials, the only option remaining for Molly was brain surgery. After her parents met with Riviello, Chief of Neurosurgery Dr. Howard Weiner, and neurosurgeon Dr. Daniel Curry to discuss Molly’s treatment plan, the team determined Molly would be a good candidate for brain surgery.

On October 26, 2017, Molly underwent laser ablation surgery, a minimally invasive procedure pioneered by neurosurgeons at Texas Children’s that uses an MRI-guided laser probe to identify and destroy lesions deep in the brain that cause seizures. As the first hospital to perform laser ablation surgery in 2010, Texas Children’s has performed more than 150 of these surgeries, making it possible to treat some of the toughest cases of epilepsy, and put the brakes on damaging seizures.

“The results are very diagnosis and patient specific,” said Curry, director of Pediatric Surgical Epilepsy and Functional Neurosurgery, who pioneered and performed the laser ablation surgery on Molly. “But for something like hypothalamic hamartoma, a particularly difficult disease to treat, it has taken success rates in curing the child’s seizures from under 50 percent to about 80 to 90 percent, so it’s been a significant change.”

MRI-guided laser ablation has not only increased the safety of epilepsy surgery, especially in cases where the targets are far from the surface of the brain, but has drastically improved recovery time. Many children go home the next day after surgery, seizure free. For Molly’s parents, their daughter’s outcome is truly remarkable.

“Since Molly’s surgery almost a month ago, she has not had a single seizure,” Malinsky said. “Her behavior has improved, her ability to learn and retain information at school has returned. Our daughter was able to go trick or treating for Halloween just four days after her brain surgery, which was pretty amazing.”

The Malinskys will return to Texas Children’s in February for Molly’s three-month followup. Meanwhile, they are grateful to Drs. Riviello, Curry and Weiner, and the hospital’s entire neurology and neurosurgery teams for the exceptional level of care, compassion, professionalism and teamwork they delivered to their daughter.

“Between our first visit to Texas Children’s in August and Molly’s surgery, everyone treated our daughter with compassion and offered ways to be helpful in the immediate and distant future as Molly’s treatment plan began to unfold,” Malinksy said. “I could not imagine this journey without the shared and genuine support of Texas Children’s amazing Neurology and Neurosurgery teams. Clearly, you have recruited the best doctors in the country.”

Click here to learn more about Texas Children’s Comprehensive Epilepsy Program and laser ablation surgery.

Hundreds of Texas Children’s supporters attended The Forum Luncheon in Houston on November 13. Hosted by The Development Department, the event focused on the success of the Texas Children’s Cancer Center and featured stories from two cancer survivors as well as an in-depth conversation between Cancer Center Director Dr. David Poplack and Fox 26 Morning News Co-Anchor Melissa Wilson.

Poplack’s conversation with Wilson illustrated how far the Cancer Center has come in helping children with cancer, growing from six faculty, 42 employees, one laboratory and less than $300,000 in grant funding when Poplack joined the center in 1993 to a center that now has 190 faculty, more than 900 employees, 46 laboratories and about $40 million a year in peer reviewed grant funding.

“We have become the largest and we believe the finest children’s cancer program in the country,” Poplack said. “Through our many research advances, our development of exciting, effective, new therapies and most recently through our burgeoning global program, we are having a far-reaching impact on the field.”

Poplack emphasized the need for children to be treated in children’s hospitals like Texas Children’s, which has expert multi-disciplinary teams equipped to tend to all aspects of a child’s care. As the largest pediatric cancer center in the U.S., we provide individualized, state-of-the-art medical treatment for patients with childhood cancer, he said.

“Treating children from more than 35 states and 26 countries, we aim to provide the most family-centered, advanced care available,” Poplack added. “In addition to continued excellence and leadership in treating all forms of pediatric cancer, we continue to expand and grow to better serve our patients.”

Poplack stressed that even with dramatic improvements in treating children with cancer – increasing the survival rate from 20 percent to 80 percent – the disease still is the leading cause of death from disease in children in the nation.

That’s why Texas Children’s Cancer Center is vigilant in its research efforts, especially in the areas of developmental therapeutics, precision oncology and cell therapy and immunotherapy.

“We are dedicated to developing effective treatments for the 20 percent of childhood cancers that are most difficult to treat,” he said. “We won’t quit until we find a cure, and even then, we will move forward to find better ways to help fulfill the long-term needs of childhood cancer survivors.”

Texas Children’s Hospital Spiritual Care Department is asking you and your faith community to consider participating in No Crib For A Bed, a program that helps provide safe-sleeping accommodations to children and families in need.

Due to limited resources, many families in the Greater Houston area are forced to co-sleep with their infants. Such sleeping accommodations pose serious risks of injury and possible death to a child. The Spiritual Care Department is trying to minimize such risks by facilitating the provision of new mobile cribs, such as Pack N Plays, and new baby blankets to families in need. Along with the mobile cribs and blankets, the department, through its No Crib For A Bed program, provides safe sleep information provided by our Childhood Injury Prevention Department.

Donations of the mobile cribs and blankets and/or money are facilitated through various faith communities throughout the area.

“We are asking you to help and to please discuss with your faith community about donating one or more new Pack N Plays and a corresponding new baby blanket,” said Chaplain James Denham. “Your help goes a long way in helping the families in our community and especially the youngest among us find protection and safety.”

For more information or if you have questions, please contact Denham or the Spiritual Care Department at ext. 4-7223.

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.