Superhero Austin fights cancer

When you arrive to the hematology and oncology unit at CHOC Childrens Hospital, theres someone you wont miss  and if you do, hell make sure you notice him. 

Three-year-old Austin, a CHOC patient, is a bundle of energy and can often be found running around in a costume, jamming out to his favorite music or yelling out, Hi! to everyone who passes his hospital room. He is your typical toddler, except for one thing — he has cancer. 

Austin at CHOC Children's
Austin at CHOC Children’s

 Austin was diagnosed earlier this year with acute myeloid leukemia (AML) with FLT3-ITD and NPM1 mutations. Before his diagnosis, Austin had constant and unexplained fevers, bone pain, loss of appetite and extreme fatigue. His pediatrician, Dr. John Carruth, ordered a blood test that showed an alarmingly high white blood cell count. 

Austins parents, Kristen and John, were told by Dr. Carruth to bring Austin immediately to CHOC. 

It felt like a surreal nightmare walking onto the fifth floor at CHOC and seeing the words cancer unit,’” says KristenIt was the most afraid Ive ever been in my life.” 

Due to Austins cancer mutations, his parents were told he may need a bone marrow transplant. This kind of transplant can often be a cure for certain oncology diagnoses, but the process is not easy  especially for a young child. Thankfully, his oncologist Dr. Jamie Frediani is committed to staying up-to-date with the latest research and new studies within pediatric oncology, and she knew that children with similar mutations to Austin’s can do much better without having to undergo a transplant. 

Knowledge is constantly evolving, and with it our treatment strategy  giving patients like Austin an improved prognosis, says Dr. Frediani. 

Austins care plan moved forward with five rounds of chemotherapy, but that was just one part of the battle. A few weeks after Austin was admitted, California enacted stay at home orders due to COVID-19 and CHOCs visitor guidelines were revised in the interest of curbing the spread of the pandemic.

During the past few months, there were moments that were especially hard for Austin – but he was never fighting alone. Although he experienced nausea, an allergic reaction, a fungal infection in his lungs, high fevers, painful mouth sores and overall body pain, Austin and his parents had an entire team fighting alongside them.  

The staff, doctors, nurses, child life specialists, music therapists and all our other cancer-fighting friends on our floor have been so loving and friendly,” says Kristen. You never want to hear your child has cancer, but if it means you get to meet wonderful and inspiring people along the way, then this entire experience is made a little easier and a lot less painful.” 

Austin at CHOC Children’s
Austin at CHOC Children’s

As much as CHOCs staff has made an imprint on Austins heart, he has done the same for them in return. While attached to his IV pole, Austin sprints through the halls daily introducing his bright personality to those around him, bravely shows off his superhero-fighting moves to all the nurses and has chosen to be happy every day for the 163 days he has been at CHOC. 

Under the care of Dr. Frediani and the oncology team, Austins chemotherapy treatment has gone well, and he was recently able to return homeGoing forward, hell have regular follow-up appointments with his care team. Austin and his parents are excited for him to start pre-school, take a karate class, play on a baseball team and continue to lift people up wherever he goes. 

As much as were excited to move on with our lives, I hope Austin remembers this experience,” says Kristen. I hope he remembers the hard things he did, the fears he overcame, the people he met. I hope he remembers just how brave he was and how much braver he will be because of this. 

Learn more about the Hyundai Cancer Institute at CHOC Children's

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A gain against pain

A child, resting in bed, fires up her 7-inch tablet and opens an app.

She selects from a variety of cartoon avatars — such as a panda or penguin — and backgrounds that include a colorful ocean floor with fish and other sea creatures.

Game on.

But this isn’t a typical game. It’s a kid-friendly tool that allows the child, who is being treated for cancer, to report the severity and type of pain she’s experiencing from her home — information her doctor can access in real time.

The app, named Pain Buddy, may aid in the reduction of pain severity in children during cancer treatment, according to results of a pilot study recently published in the online journal Pediatric Blood & Cancer.

The study found that Pain Buddy may be especially beneficial in helping children who have high levels of pain.

Pain Buddy is the brainchild of Michelle A. Fortier, a CHOC Children’s pediatric psychologist who is also a faculty member of the UC Irvine Sue & Bill Gross School of Nursing.

A screenshot of the Pain Buddy app
Pain Buddy app

Fortier, who specializes in pain management in children, was principal investigator of the recently published pilot study that was based on clinical studies of CHOC patients monitored by pediatric oncologist Dr. Lilibeth Torno and pediatric oncology nurse practitioner Christine Yun.

“Pain management is an important part of cancer survivorship, and I think Pain Buddy’s potential for use is very broad,” Dr. Torno says.

Most of the 48 children participating in the eight-week study had been diagnosed with leukemia. All were between the ages of 8 and 18. Results of this particular study come amid ongoing studies on the Pain Buddy app at other sites. Results of the comprehensive research effort, which will track 206 children, are expected in three years, Fortier says.

Pain Buddy, Fortier explains, was developed a few years ago to address a gap in pain management of kids at home compared to kids in the hospital, where it’s easier for doctors and nurses to stay on top of patients’ needs. The 48 children who participated in the pilot study spent a lot of time at home.

Tapping the expertise of professional app developers and researchers at UCI in the California Institute for Telecommunication and Information Technology (Calit2), Fortier and several other colleagues came up with a way for children to rate their pain as they were feeling it from home.

“Most kids experience pretty moderate to severe pain throughout their cancer treatment, and this pain just wasn’t sufficiently being addressed when the patients were at home,” Fortier says. “And when we think about pain assessment, we’re really terrible retrospective reporters of our pain experience.”

But with Pain Buddy, users can say how much they’re hurting, and where, as it’s happening.

“Pain can come from the cancer itself, such as a solid tumor, and it can come from treatment procedures,” Fortier says. “For example, lots of skin-breaking procedures occur during cancer treatment. And treatments like chemotherapy can cause nerve pain, inflammation of the gastrointestinal tract and mouth sores.”

In addition to completing a pain and symptom diary twice daily, the app automatically alerted the participants’ medical teams about such symptoms as nausea, itching, sadness and redness.

With a touch of a finger, the patients could select word bubbles to indicate descriptions — such as bad, annoying or terrible — to describe their pain.

A screenshot of the Pain Buddy app
The Pain Buddy app allows users to describe their pain with word bubbles, and can alert the care team.

Clinicians, in turn, could promptly address any symptoms that warranted intervention.

A key component of the Pain Buddy app, which for now only has been used by the pilot study participants, is the incorporation of coping skills shown to be effective in the management of pain, such as deep breathing, progressive muscle relaxation and guided imagery.

During these skills training exercises, patients could accumulate coins and, visiting a virtual store, customize their personal avatar and buy additional background themes.

A screenshot of the Pain Buddy app
The Pain Buddy app can help patients learn coping skills.

Pain Buddy represents an effective partnership between parents, young cancer patients and the health care institutions that treat them, Dr. Torno says.

“Our focus on cancer survivorship begins on the day of diagnosis,” Torno says.

CHOC’s After Cancer Treatment Survivorship (ACTS) program features a multidisciplinary team of clinical experts who monitor the late effects of cancer and develop a plan for long-term surveillance to ensure the best possible outcomes. Every child at CHOC who has gone through cancer therapy eventually lands in the ACTS program.

Fortier said the ultimate goal is to further refine Pain Buddy and license the app to hospitals for widespread use.

“The goal is to have every kid undergoing cancer treatment — from sarcoma patients to those with bone and other cancers — to have the ability to use Pain Buddy.”

Learn more about the Hyundai Cancer Institute at CHOC Children's

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9 ways to protect immunocompromised children from COVID-19

We know how frightening the COVID-19 pandemic may be for parents – especially parents of immunocompromised children.

At this time, the full impact of COVID-19 on children, especially those with compromised immune systems, is unknown. However, limited information so far shows that most healthy children with the virus have done well.

Here are some recommendations for steps to take to help protect immunocompromised children from COVID-19:

  1. Call your provider

Call your child’s care provider first if your child has a runny nose or cough. Go to the emergency department if a cough or runny nose is accompanied by fever, or if you are advised to by your doctor, or you believe the situation is emergent.

  1. Follow through with medical appointments

If you have medical appointments that are important to your child’s care, you should attend them. Many providers are offering telehealth appointments. Call your provider’s office to see if this is available, and if your appointment can be conducted through telehealth.

  1. Practice good handwashing

Everyone in the home should consistently wash their hands with soap and water for at least 20 seconds. This is one of the most effective ways to stop the spread of illness. If you don’t have access to soap and water, hand sanitizer is a good alternative.

  1. Cover coughs and sneezes

Cough and sneeze into your inner elbow – and teach children to do the same. It’s also important for everyone to avoid touching their mouths, noses and eyes.

  1. Disinfect high-touch surfaces

It is important to disinfect surfaces that are commonly touched such as the cell phones, tablets, game controllers, doorknobs, light switches, tables and counters.

  1. Practice social distancing

Orders from the governor of California for all state residents to stay home — except for essential needs, such as if your work supports the continuity of critical infrastructure sectors, or if you need to access essential services like food, pharmacies, banks or laundromats – are in place until further notice.  Read more here.

If you must leave your home, wear a mask and maintain at least 6 feet of distance from other people whenever possible.

  1. Follow guidance around face masks

The Centers for Disease Control and Prevention (CDC) recommends wearing cloth face coverings in public settings like grocery stores and pharmacies where social distancing measures can be difficult to maintain. These face coverings can slow the spread of COVID-19 and help people who may have the virus and do not know it from transmitting it to others. It is not necessary for children under the age of 2 to wear cloth face coverings.

The governor of California has mandated that face coverings be worn by the general public when outside the home. This applies to high-risk situations such as entering public spaces; obtaining medical attention; riding public transit; certain work settings; and while outdoors in public spaces when maintaining a physical distance of 6 feet from persons who are not members of your household is not feasible. Exemptions include children age 2 and younger; persons with a medical condition, mental health condition or disability that prevents them from wearing a face covering; the hearing impaired or those communicating with them; persons seated at restaurants while eating or drinking, provided they maintain physical distancing; and those engaged in outdoor work or recreation alone or with household members while maintaining physical distancing from others. Read the full order here.

The CDC offers guidance on how to properly wear a cloth face covering, as well as tutorials on how to make your own mask. See these resources here.

N-95 or surgical masks are not recommended for public use, as supplies are needed by healthcare workers and first responders.

  1. Avoid non-essential travel

We recommend following the CDC’s guidance for travel.

If someone in your family has recently traveled to an area with high COVID-19 activity and is showing symptoms of respiratory illness, it is best for you and your child, immunocompromised or not, to avoid contact with the person for at least 14 days.

  1. Maintain enough medical supplies

Ensure you have necessary medical supplies and prescription medications on hand, check levels of all your medications and let your provider know if you need refills.

This article was updated on July 16, 2020.

Get more information on Coronavirus (COVID-19)

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CHOC recognized as one of nation’s best children’s hospitals

best-childrens-hospitals-7specialtiesCHOC Children’s is one of a select number of pediatric facilities nationwide to have been ranked today as a best children’s hospital by U.S. News & World Report.

The following CHOC specialties are honored in the 2020-21 Best Children’s Hospitals rankings: neonatology; cancer; diabetes and endocrinology; neurology and neurosurgery; orthopaedics; pulmonology; and urology. Both orthopaedics and diabetes and endocrinology earned a “Top 20” spot. 

“At CHOC, we are committed to the highest standards of care, safety and service – and this honor reflects that unwavering dedication,” said Dr. James Cappon, CHOC’s vice president, chief quality and patient safety officer and interim chief medical officer. “Not only does this recognition of our excellence in these subspecialties, including two on the top 20 lists, validate our efforts, but it also offers our patients and families additional assurance of our commitment to their health and safety.”

The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.

The U.S. News Best Children’s Hospitals rankings rely on clinical data and on an annual survey of pediatric specialists. The rankings methodology factors in patient outcomes, such as mortality and infection rates, as well as available clinical resources and compliance with best practices.

Learn more about Best Children’s Hospitals rankings.

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Nueve maneras de proteger contra la COVID-19 a niños con un sistema inmune comprometido

Sabemos lo espantoso que puede ser para los padres la pandemia de la COVID-19, especialmente aquellos con hijos considerados inmune debilitados.

En estos momentos se desconoce el impacto pleno de COVID-19 en los niños, especialmente aquellos con un sistema inmune debilitado.  Sin embargo, la información, aun cuando limitada hasta ahora, muestra que la mayoría de niños saludables que tienen el virus, han reaccionado bien.

He aquí algunos pasos recomendables para proteger a los niños con inmunidad debilitada de la COVID-19:

  1. Llamar a su proveedor de salud

Llame primero al profesional de salud si su niño tiene escurridera nasal o tos.  Vaya al departamento de urgencias si la tos y escurridera nasal son acompañadas de fiebre, si el médico lo aconseja, o si usted cree que la situación es una emergencia.

  1. Cumplir con asistir a las citas médicas

Si tiene citas médicas consideradas importantes para el cuidado de su niño, debería asistir a ellas.  Muchos profesionales de la salud están ofreciendo citas con el sistema de video llamado telesalud.  Llame a las oficinas de su proveedor para ver si tienen este servicio disponible y si su cita puede ser llevada a cabo por medio de telesalud.

  1. Lavarse bien las manos

Todos en la casa deberían lavarse sistemáticamente las manos con jabón y agua por lo menos durante 20 segundos cada vez. Ésta es una de las formas más eficaces de detener la propagación de enfermedades.  Si no tiene acceso a jabón y agua, un gel desinfectante de manos es una buena alternativa.

  1. Cubrirse al toser y estornudar

Cuando tosa y estornude, hágalo en la parte interior del codo, y enséñeles a los niños lo mismo.  También es importante que todos eviten tocarse la boca, nariz y los ojos.

  1. Desinfectar las superficies que se tocan mucho

Es importante desinfectar aquellas superficies que se tocan comunmente, tales como los teléfonos móviles, las tablets, los controles de los juegos, las manijas o perillas de puertas, los interruptores de luz, las mesas y los mostradores.

  1. Practicar el distanciamiento social

El gobernador de California emitió órdenes para todos los residentes del estado de quedarse en casa, con la excepción de salir a realizar aquellas necesidades esenciales tales como, si su trabajo forma parte de la continuidad de sectores críticos de infraestructura, o cuando sea necesario abastecerse de servicios esenciales como comida, de farmacia, bancos o lavandería, y seguirán en pie hasta nueva orden.  Pulse lo azul para leer más.

Si es absolutamente necesario salir de casa, hágalo usando un cubrebocas y mantenga una distancia de 6 pies con otras personas cuando sea posible.

  1. Seguir las guías relacionadas con los cubrebocas

El Centro de Control y Prevención de Enfermedades (CDC, siglas en inglés) recomienda usar cubiertas de tela para la cara en entornos públicos como tiendas de comestibles y farmacias, en donde las medidas de distanciamiento social puedan ser difíciles de mantener.  Estas cubiertas faciales pueden reducir la propagación de la COVID-19 y ayudar a que la gente que pudiera tener el virus sin saberlo, no lo transmita a otros.

La CDC ofrece guías para usar correctamente las cubiertas faciales, así como también tutorías para fabricar su mascarilla propia.  Ver estos recursos aquí.

No se recomienda el uso público de mascarillas quirúrgicas ni la mascarilla N-95, ya que esos suministros son más necesitados por el personal sanitario, y los socorristas.

  1. Evitar viajes que no sean esenciales

Nosotros recomendamos seguir las guías para viajar de la CDC guidance.

Si alguien en su familia ha viajado recientemente a un área con alta actividad de infecciones de la COVID-19, y muestra síntomas de enfermedad respiratoria, es mejor para usted y su niño, inmune debilitado o no, evitar el contacto con esa persona por lo menos por 14 días.

  1. Mantener suficientes suministros médicos

Asegúrese de tener a la mano suministros médicos necesarios, así como medicamentos recetados, y revise las cantidades de todos los medicamentos para informarle a su proveedor si necesita volver a surtirse.

Get more information on Coronavirus (COVID-19)

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