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• Burtonsville Location: 11701 Beltsville Drive, Beltsville, MD.

Palliative care is a special type of care aimed at improving quality of life for someone with a life-threatening illness. For children with cancer, this type of care is usually given alongside curative treatment. Palliative care for childhood cancer is a broad term that encompasses many types of care and treatment.

Childhood cancer does not just impact the child’s physical body. It affects their mental and emotional health, development, and relationships with family members and peers. Palliative care aims at addressing the child’s physical, psychological, emotional, social and spiritual needs, as well as those of their family. Since family members and other caregivers have an impact on the child’s health, palliative care for childhood cancer is designed to help them, too. 

Though sometimes the terms are used interchangeably, palliative care and hospice care are not the same. Hospice care is a type of palliative care for someone who is no longer expected to live. Unlike palliative care, which can take place at any time throughout the course of illness, hospice care is reserved for the end of someone’s life.

How does palliative care help children with cancer?

Palliative care is tailored to the individual child’s and family’s wants and needs. Some of the ways palliative care can help children with cancer and their families are:

• Managing physical symptoms of cancer and its treatment, including pain, itching, nausea, vomiting, diarrhea, fatigue and more
• Helping patients and family members cope with stress, fear and anger
• Helping patients and family members manage psychological problems such as depression and anxiety
• Helping patients and family members understand cancer, treatment and what the child with cancer is experiencing
• Offering emotional and spiritual support to children and family members
• Assisting parents and older patients in making decisions about their treatment and care
• Helping parents talk to their children about death
• Providing activities to enhance quality of life, such as music and art therapy
• Facilitating communication and coordinating treatment among care team members
• Helping transition the child’s care from hospital to home
• Providing grief counseling

Who is on the palliative care team for childhood cancer?

Palliative care teams vary between hospitals and institutions, and an individual child’s care team can be as large or as small as their family needs it to be. The palliative care team for children with cancer is made up of specialists trained in supporting children with serious illnesses. They can include:

• Doctors and nurses
• Social workers
• Child life specialists
• Physical and occupational therapists
• Psychiatrists, psychologists and counselors
• Art and music therapists
• Dietitians and nutritionists
• Chaplains and spiritual advisors
• Home health aides

How can parents support their child in palliative care?

Seeing your child sick and in pain is one of the hardest parts of being a parent of a child with cancer. At the American Childhood Cancer Organization, we know that you want to do everything in your power to ease your child’s suffering. As part of our commitment to support families of children with cancer, we offer A Parent’s Guide to Enhancing Quality of Life in Children With Cancer, a 261-page guide available for free in our digital library. You may also request a hard copy as part of our free childhood cancer resources for families, and additional copies can be purchased from our store.

Your child’s palliative care team is there to make them as comfortable as possible during their childhood cancer experience, and they’re there to help you too. By working together, you can provide your child with the support they need no matter where they are in their cancer journey.

The ACCO is the nation’s oldest and largest grassroots childhood cancer organization, committed to shaping policy, supporting research, and providing resources for children with cancer, families and survivors. With your help, we can continue to provide these resources for free. Donate now.

Meet Noah, a two year old hepatoblastoma warrior who loves to dance.

When Noah’s stomach looked a bit larger on one side, his mother Nicole began to take notice. Noah was born with a hernia near his belly button, so his family was used to seeing his stomach larger on one side, but eventually it had corrected itself. Doctors didn’t have any causes for concern at that point. Noah went into the doctors for a routine checkup and to get shots. Doctors felt that his liver was a bit too large, so they sent him to the emergency room to have imaging done. 

Noah was admitted to the hospital immediately and his parents were told that he had a mass on his liver. “We were devastated and shocked. The day of his diagnosis was overwhelming. Being that Noah was our first child, we didn’t know how to handle it all. It happened so fast.” 

In February of 2021, Noah was diagnosed with metastatic hepatoblastoma. He was put on an immediate roadmap for treatment including a biopsy, several rounds of chemotherapy and a liver transplant. 

During his journey, “he remains a ball of light. He can brighten anyone’s day. While fighting his battle, he has brought so many people joy just by seeing him run down the hospital halls and hearing his courageous laugh.” 

Currently, Noah is completing his end of treatment and looks forward to playing with his little brother. 

Kids like Noah shouldn’t have to trade learning his ABC’s and making new friends for chemo and surgery. ACCO wants to give these kids back their time. Give the gift of time by donating today: http://give.acco.org/GiftOfTime  

Visit the Giant Supermarket locations here:

• Burtonsville Location: 15618 Old Columbia Pk, Burtonsville MD.

Each year, about 6,000 children in the United States are born with Down syndrome, also known as trisomy 21, a condition where they have an extra copy of their 21st chromosome. The extra chromosome causes delays in their mental and physical development and makes them more susceptible to certain health issues, including problems with their heart, lungs, vision and hearing. It also makes them more likely to develop certain diseases, like childhood leukemia.

Is leukemia common in Down syndrome?

Leukemia is still considered rare in children with Down syndrome, but they are more likely to develop leukemia than other children. One large-scale 2021 study found that 2.8% of children  with Down syndrome had leukemia, compared with only 0.05% of other children. In particular, children with Down syndrome are 150 times more likely than other children to develop acute myelogenous leukemia, or AML, before age 5. The study also found that children with Down syndrome were more likely to develop acute lymphoblastic leukemia, or ALL, at any age. 

How is Down syndrome related to leukemia?

For many years, scientists didn’t know why so many more children with Down syndrome developed leukemia. But this year, researchers at the Linda Crnic Institute for Down Syndrome discovered that it could have something to do with their stem cells.

Stem cells are special cells that replicate themselves and can develop into different types of cells. What the researchers found is that children with Down syndrome are more likely to have clonal hematopoiesis (CH), a condition where blood stem cells develop a mutation and then continue to replicate, leading to a buildup of mutated blood cells.

Some people with CH can be healthy and have no symptoms. But in others, CH can lead to blood cancers, especially AML.

Prognosis and Treatment for Children with Down Syndrome and Leukemia

In particular, children with Down syndrome tend to develop a subtype of AML called acute megakaryocytic leukemia, or AMKL. This subtype is very rare among other children and can be very difficult to treat, but children with Down syndrome and AMKL typically respond well to treatment. It’s believed that the very mutation that makes children with Down syndrome more likely to develop AMKL actually makes their cancers more susceptible to treatment. 

All children with leukemia are treated with some combination of chemotherapy. However, children with Down syndrome tend to have more side effects from chemotherapy, so their doctors will adjust their treatment to reduce the toxicity while maintaining its effectiveness.

Overall, 80% of children with Down syndrome and leukemia will survive. A child’s survival depends on many factors, however, so it’s important for parents to discuss their individual child’s prognosis with their doctor.

The American Childhood Cancer Organization is the nation’s oldest and largest grassroots organization dedicated to childhood cancer. We shape policy, raise awareness, and offer educational resources to children with cancer, survivors, and their families. With your help, we can continue to provide our support free of charge. Donate now.

Learn more about childhood leukemia:

• What is the expected lifespan of a child with leukemia?
• About childhood leukemia, detection and diagnosis
• Causes, risk factors, and prevention of childhood leukemia