What we can do to fight the trauma of childhood cancer + COVID-19

Every time 5-year-old Julia Malicki goes to the doctor for cancer treatments, she has to brave having a cotton swab stuck up her nose to the back of her throat to test for coronavirus. The fear and discomfort she endures seems almost unbearable for a child who has already lost her right eye, and 70% of the vision in her left, to a rare form of cancer called retinoblastoma.

It’s anguishing for her and for her mom, Jessica.

“It’s a lot of emotional turmoil as a child to have to go through that fear,” Jessica told USA Today in an article titled “‘Like a new diagnosis’: Cancer families struggle to continue treatment amid coronavirus pandemic.” “The COVID testing really impacted (her).”

Cancer + COVID-19: Traumatizing Kids & Families

Surgery, radiation, and chemotherapy already traumatize families emotionally, psychologically, and financially. Now they face the added fear and worry of contracting another potentially fatal disease.

Since October 2016, Julia’s family has traveled from Wisconsin to New York City every four weeks for her tests and treatments. After driving 17 hours, the family has arrived to find motels closed due to the pandemic. Due to COVID-19 rules, only her mother can be with her during hospital visits, depriving Jessica of the support of her husband or other family.

Disrupting Caregiving Comfort

Some patients have had their treatments postponed or delayed. Lakelynn Markham, a 6-year-old from Holly Springs, N.C., became a candidate for a clinical trial three years ago after doctors discovered a tumor pressing on critical nerves in her neck, disqualifying her from surgery.

For half of her life, Lakelynn and her family traveled to the Dana-Farber Cancer Institute in Boston for her treatment. The pandemic ended those trips. She now sees doctors at a Duke University Medical Center and receives treatments via overnight courier.

It means that she now has to fight for her life without her “superhero,”  a Boston nurse named Shawn, who used to help her through her treatments.

“He has magic,” Lakelynn told Raleigh, N.C. radio station WRAL, explaining that when Shawn prepared her IV, his magical hands made sure the needle didn’t hurt at all.

Children like Lakelynn get to know and trust their doctors and nurses, and depend on routines to help them through medical trauma. Changing routines can increase a child’s fear and anxiety.

They also face struggles that make the inconveniences healthy people face — like having to wear masks and maintain social distance — seem minor. Lakelynn has been doing these things since long before the pandemic began. And while she understands why she can’t play with her friends, it is still heartbreaking for her mom to watch her staring out the window at other kids having fun.

Raising the Stakes of Pediatric Cancer

For children battling cancer and their families, COVID-19 has disrupted surgeries, radiation and chemotherapy treatments, and added to their emotional, financial, and psychological trauma. The same is true for children and families fighting other major medical issues.

A new study in the journal JAMA Pediatrics looked at 48 children in the United States in intensive care with COVID-19. It found that 40 of them had significant medical issues and half of these were categorized as “medically complex,” meaning they were either dependent on technological support for survival or faced serious medical issues such as immunosuppression, usually connected to cancer treatment, the New York Times reports.

“Children with immunodeficiencies or children who have had chemotherapy are at higher risk for serious illness,” the article notes.

Yet children without previous medical problems have also ended up in intensive care, sometimes suffering from a condition related to COVID-19 known as pediatric multisystem inflammatory syndrome. It develops weeks after the initial coronavirus infection and assaults a child’s circulatory system with inflammation rather than directly attacking the lungs.

Treatment Must Go On

Despite the risks posed by the pandemic, experts warn against discontinuing chemotherapy, surgery, radiation, and other therapies for children battling cancer.

“We have observed in our conversations with colleagues from around the world that it is giving us major disruptions, and that children will die or have died, not because of the infection but because of how COVID-19 has affected their (health care) services,” Dr. Carlos Rodriguez-Galindo, told U.S. News.

Rodriguez-Galindo is director of St. Jude’s Global COVID-19 Observatory and Resource Center for Childhood Cancer, a new database of resources for medical professionals specializing in treating pediatric cancer. Similar to the national pediatric cancer database advocated by Bridge to a Cure Foundation, it includes a resource library, a global registry of pediatric cancer patients infected with COVID-19, and a collaboration space for healthcare professionals.

“We have learned from them that even the children that have active therapy for cancer with COVID-19 don’t seem to do that poorly, and that is reassuring.”

As a result of the pandemic, children and families battling cancer and other chronic and terminal diseases and conditions face longer odds and more harrowing battles than they did before. They need our help.

How You Can Help

• Follow COVID-19 guidelines including wearing a mask and staying at least six feet away from people when in public and washing your hands frequently. Parents of kids battling cancer appreciate when we do our part to stop the spread and help keep their kids safe.
• Support families who have lost children to cancer and those still in the fight. Some families who have lost children are experiencing PTSD and anguish over what other childhood cancer families and patients now face in the pandemic. Some practical ways mentioned in this article include contacting families via social media and asking how you can help — financially, through donations of supplies, or by offering to help with shopping or other errands. Visit via phone and video and be there to listen and provide emotional support.
• Donate blood and blood products such as platelets to help combat shortages due to blood drives that have been canceled due to the pandemic. Cancer patients desperately need these, so contact your local blood bank to schedule an appointment.
• Join the National Bone Marrow Donor Registry. Donated bone marrow and stem cells are a critical part of cancer treatment that help save lives. Learn more and join the national database/registry at DKMS.org or BeTheMatch.org.
• Make your voice heard through Bridge To A Cure. The Bridge To A Cure Foundation is working to help kids with cancer and their families by advocating for greater efficiency, collaboration and data sharing to find effective treatments and cures. Stay updated on our efforts, comment on the fight, and learn about other ways to help when you visit BridgeToACure.org and sign up to receive updates.

Social media posts:

Children with immunodeficiencies and those who have had chemotherapy are at higher risk for serious illness due to COVID-19.

Families going through surgery, radiation, and chemotherapy now face added trauma of possibly contracting another potentially fatal disease.

Lakelynn has to fight for her life without her “superhero,”  a Boston nurse named Shawn who used to help her through her treatments.

Children fighting cancer get to know and trust their doctors and nurses. Changing caregivers and routines adds to their fear and anxiety.

Despite risks posed by the pandemic, experts warn against discontinuing chemotherapy, surgery, radiation and other therapies.

Support families who have lost children to cancer and those still in the fight. Visit www.BridgeToACure.org.

The coronavirus outbreak is teaching us the importance of an “ounce of prevention.”

With the worldwide spread of coronavirus, we are all being asked to do our part to stop its spread. Washing hands, maintaining social distance, and staying home if you are sick are things we can all do to preempt COVID-19, the respiratory illness caused by coronavirus.

Much has been written about how COVID-19 largely spares children. However, families of children with cancer know that any infection, including this new one, can weaken their child’s defense system.

Amid the coronavirus pandemic and all we are being asked to do to stop it, we should not lose sight of the fact that cancer remains the leading cause of death by disease among children and adolescents, and the third leading cause of childhood death overall.

The exact cause of childhood cancer remains unknown; however, researchers believe it is most likely caused by a combination of genetic, environmental, and immune system factors. In today’s blog we examine some of these factors and what we should be doing to prevent more kids from developing cancer.

Risk factors for childhood cancer remain poorly understood for several reasons. For example, most children with leukemia don’t have any known risk factors, and many children who are affected by risk factors don’t develop cancer.

Nevertheless, we know that there are many factors that increase the risk a child will develop cancer. These include prenatal problems, exposure to infections and radiation, and genetic factors. Here is what we know about some of the risk factors, and recommendations for preventative measures we can take to preempt them:

Genetic Risk Factors

Cancer is a genetic disease, caused by certain changes to genes that control the way cells function, especially how they grow, divide and mutate. Genetic changes that promote cancer can be inherited from parents if the changes are present in reproductive cells. Inherited genetic mutations play a major role in about 5-10% of all cancers, according to the National Cancer Institutes.

“Genetic changes that cause cancer can also be acquired during one’s lifetime, as the result of errors that occur as cells divide or from exposure to carcinogenic substances that damage DNA, such as certain chemicals in tobacco smoke, and radiation, such as ultraviolet rays from the sun,” NCI states.

How We Can Preempt Genetic Risks

Genetic tests for hereditary cancer syndromes can determine if a person from a family that shows signs of such a syndrome has one of these mutations, NCI says. These tests can also show whether family members without obvious disease have inherited the same mutation as a family member who carries a cancer-associated mutation.

The World Health Organization classifies four different groups of external agents as carcinogens that cause cancer in children: physical, biological, chemical carcinogens, and dietary components such as cured meats. Limiting or preventing children’s exposure to highly processed foods, tobacco smoke, and environmental toxins such as pesticides, solvents, and household chemicals can help to preempt genetic risks.

Infectious Risk Factors

Certain infectious agents, including viruses, bacteria, and parasites, can cause cancer or increase the risk it will develop, NCI states. Some viruses can disrupt signaling that normally keeps cell growth and proliferation in check. Some infections weaken the immune system, making the body less able to fight off other cancer-causing infections. And some viruses, bacteria, and parasites cause chronic inflammation, which may lead to cancer.

Epstein-Barr virus and HIV, the virus that causes AIDS, have been linked to an increased risk of childhood cancers, including Hodgkin and non-Hodgkin lymphoma, according to Stanford Children’s Health. Hodgkin lymphoma accounts for 4-6% of all childhood cancers, with the highest incidence rates in ages 15-19, while non-Hodgkin lymphoma (NHL) account for 6-7% of all childhood malignancies, according to NCI.

Acute lymphoblastic leukemia (ALL) and acute myeloblastic leukemia (AML) are the two most frequent types of leukemia in children. In a Kazakh study titled “Childhood cancers: what is a possible role of infectious agents?” researchers propose two possible models to explain how infectious agents could play a role in the development of childhood leukemia — either by directly transforming cells, or by secondary genetic or immunological alterations caused by abnormal immunological responses to congenital, neonatal, or post-neonatal infections. These can act as a “triggering mechanism” for leukemia and possibly other types of cancer, the study states.

How We Can Preempt Infectious Risks

Many infectious agents can be controlled by treatment and/or vaccination. For instance, using immune globulins during pregnancy and after birth has been shown to boost the protective effect against some herpes viruses linked with childhood cancer. Vaccines may also protect against mother-to-child transmission of infections, the Kazakh study notes. This includes sanitation measures to prevent infections during pregnancy and early childhood, as well as in healthcare institutions.

Not surprisingly, many standard measures now recommended to prevent the spread of coronavirus are important for preventing infections that are risk factors for childhood cancer, or can exacerbate illness in young people battling cancer.

Immune and Protective System Risk Factors

The immune system helps protect against cancer in three ways: It detects “nonself” antigens from pathogens or infected/malignant cells; specifically targets and destroys pathogen or infected/malignant cells while protecting the host; and develops “immunological memory” allowing it to adapt immune responses and defend against attacks.
“This multifaceted mechanism consists of the three primary phases: elimination, equilibrium, and escape, that contribute to cancer elimination, dormancy, and progression, respectively,” states one NCI study. “Interestingly, this ability of cancers to evade or escape the immune response is now recognized to be one of the most distinguished cancer hallmarks, which provides the platform for treatments within the context of immunotherapies.”

How We Can Preempt Immune System Risk Factors

Boosting research into immunotherapy is one of the most promising areas of Bridge to a Cure’s work to support building a National Pediatric Cancer Database. Building the database will also allow us speed up research into how cancer cells are able to evade apoptosis (programmed cell death), and to target angiogenesis, the formation of new blood vessels that feed tumor growth.

Just like with coronavirus, there are things we can all do to help boost our children’s immunity and our own, including maintaining healthy diets, immunizations, regular exercise and medical exams, and of course, frequent hand-washing. As our nation copes with the unprecedented coronavirus epidemic, Bridge to a Cure will continue the fight to tear down the five deadly barriers against finding a cure, and to make a national database a priority.

Childhood Cancer Facts

• The incidence of childhood cancer is on the increase, averaging 0.6% increase per year since the mid-1970s, resulting in an overall increase of 24% over the last 40 years.(1)
• 1 in 285 children was diagnosed with cancer in 2014.(1)
• 43 children per day or 15,780 children per year are expected to be diagnosed in with cancer (10,450 ages 0 to 14, and 5,330 ages 15 to 19). (1)
• The average age at diagnosis is 8 overall (ages 0 to 19), 5 years old for children (aged 0 to 14), and 17 years old for adolescents (aged 15 to 19) (9), while adults’ average age for cancer diagnosis is 65.(7a)
• Childhood cancer is not one disease — there are more than 12 major types of pediatric cancers and over 100 subtypes.(1)

Source: https://cac2.org