Cancer Survivors & Childhood Cancer

Articles

Sep 1

World Cancer Day is February 4th. June 4 honors Cancer Survivors Day, and for Tilton’s Therapy for Tots, particularly child cancer survivors. The month of September is childhood cancer awareness month. Cancer is the leading cause of death in children under 15 years. Most causes of childhood cancer (or pediatric cancer) are unknown. As little as 5% of cancer cases are attributed to genetically inherited reasons. All are typically due to some kind of increasing cell growth which results in the evidence of cancer. We may be exposed to things that are cancer-causing, but it is more difficult to pinpoint what those exposures might be with children. However, with medicine and treatment options today, the National Cancer Institute reports that now 84% of children diagnosed with cancer are alive five years later. One important thing to remember is that treatment continues in different ways after the initial cancer treatment is successful for most child or adolescent patients. Globally, somewhere around 400,000 children are diagnosed with cancer each year.

Cancer Survivors and Ongoing Treatment

“Late Effects” are a known concern for patients who have undergone cancer treatments as a child. These are ways in which the body reacts to the past treatment and in turn, develops other ailments such as a decline in cognitive function or behavioral and emotional issues. Truthfully, there are many different types of late effects, and they can be physical, emotional, psychological, or can occur in a range. Follow-up care is very important for cancer survivors. Talking about a plan of long-term care is a great step in the right direction to make sure late effects are managed and prevented whenever possible.

A follow-up care plan might involve many different disciplines for treatment. It would include things like regular exams and screenings based on a schedule, measuring and checking for late effects, as well as therapy or counseling, referrals to specialists, and recommending activities or nutrition habits. You can rely on the healthcare team you have been working with to give you the best advice as to the needs of your child. If you have concerns or questions about something, it is important to allow them to suggest options and their opinions.

Occupational Therapy for Pediatric Cancer

Occupational therapists work with children to help them reach developmental milestones or engage their everyday tasks with more ease. After or during treatment for pediatric cancer, occupational therapists can help children restore some of the abilities that may have diminished or become delayed. Occupational therapy promotes achieving the maximum level of independence possible. Children recovering from cancer or cancer treatment may work on things through occupational therapy such as the development of fine motor skills, cognition, visual perception, endurance, feeding, sensory issues, or behavioral issues. If you or someone you love is seeking occupational therapy in the regions of Southern or Northern Nevada, or Oregon, our occupational therapy team is ready to assist.

Occupational Therapy for Behavioral and Mental Health

Children with cancer often process a lot of trauma throughout the process of treatment and recovery. Mental health concerns such as anxiety, depression, post-traumatic stress disorder (PTSD), or behavioral problems commonly occur in patients with cancer, particularly in children. It is important to address these common behavioral and mental health concerns to help children process in a healthy way and learn habits that will help them live more independently later in life.

There are so many side effects associated with cancer treatment, many of which are visible. Children and adolescents commonly struggle with wanting to “fit in” with their peers and judge their appearance aside from anything resulting from cancer treatment. This can present a very difficult barrier for some children to be social and engage in life in the same way they would before diagnosis.

Aside from the physical toll cancer treatments may have on the body, the emotional toll and stress are considerable. Children may carry that anxiety and stress with them even after their treatment is successful. They may worry about the future and constantly live with the fear of a need to undergo treatment again later in life.

Other considerations like academic achievement can also be affected in a negative way, as some children must stop attending school for a considerable amount of time. That can create lapses in their education according to their age group. For some children, this could mean repeating a grade or class, which can cause distress.

Occupational therapists work with children in these areas to address their behavioral and mental health. Because occupational therapy targets the activities of daily living (ADLs), it would include managing stress, creating a routine that allows for a more positive outlook, or engaging socially through different approaches based on the individual.

Physical Therapy for Childhood Cancer

Physical therapists use exercise, movement, and play to address issues related to mobility or development. In children with cancer, certain developmental milestones may be missed due to treatment needs or the child’s inability to engage. After cancer treatment has concluded, children often need support to help them physically build their strength back to its prior level. At times, children need support to help them navigate the use of assistive devices to aid in their mobility, such as a wheelchair, crutches, or prosthetic devices.

Pediatric physical therapists can help by identifying motor skill development needs. Every child is unique, and physical therapists work on addressing the unique needs of each individual by creating a specialized treatment plan. Depending on the type of cancer and how a child may be affected by the illness or treatment of the illness, they may require assistance in developing their balance and coordination, flexibility, strength, and overall physical fitness.

Speech Therapy for Childhood Cancer

Many different areas of the body can be affected by cancer or cancer treatment. Children with cancer in the brain may face certain language barriers. Speech-language pathologists help children with receptive and expressive language skills – meaning both understanding language and speaking. They may work with children to help them produce sound or address vocal problems. If fluency is affected as a result of the illness, speech therapy can help develop that skill or address a developing issue such as stuttering.

In addition to language, speech-language pathologists help develop cognitive skills and memory, which can be related to developmental milestones related to language and communication. Reading, writing, and spelling are such important communication skills for children to learn, and cancer treatment often causes children to miss school and in turn, necessitate further assistance to help them get on track. In order for kids to engage socially in an independent way, speech therapists can work on developing all of these communication skills to help them achieve their goals.

Swallowing disorders are a possible side effect of different forms of childhood cancer or cancer treatment. Dysphagia is a swallowing disorder that can result following any difficulty with the swallowing process. Speech-language pathologists can work with children to address issues with feeding and swallowing – including potentially using a specialized treatment, Vital Stim. They may conduct swallow studies to ensure safety and assess nutrient intake.

Treatment for Childhood Cancer

Pediatric cancer differs from adult cancer in terms of treatment options, and many experts in childhood cancer can help parents navigate the best route for their families. There are many different forms of treatment, including chemotherapy, surgery, immunotherapy, radiation therapy, or stem cell treatments. In some cases, a child may undergo a combination of different types of treatment. Many clinical trials are also conducted for children and adolescents in an attempt to find more effective therapy options. St. Jude’s Children’s Research Hospital continues to advocate for childhood cancer treatments and has increased the survival rate from 20% to 80% since beginning its work over 50 years ago. Their goal is to eliminate the loss of life due to cancer in children. Treatment can have very different effects on children compared to adults. Because children and adolescents are still growing, the treatment received for cancer may respond differently as they age.

Surgery

Surgery has been used for decades to treat many different types of cancer. Surgery has also been beneficial for understanding what type of surgery the person has, as well as understanding how far cancer has spread. Surgery can also help to relieve discomfort or help take care of other problems that may be caused by cancer. It may take one or several procedures depending on where the patient is in their cancer stage.

Biopsy: a biopsy is a procedure where a tissue sample is conducted to test for cancer. The diagnosis happens after the tissue sample is thoroughly examined. How a sample is taken depends on where the tumor is in the body and what type of cancer is suspected. Biopsies taken during surgery are often referred to as surgical biopsies.
Staging Surgery: Staging surgery is used to help figure out how far along the cancer is. In this surgery, the area around the cancer including lymph nodes and nearby organs is examined. Staging surgery helps to guide future treatment decisions and predict how people will respond to treatment.
Curative Surgery: Hence the name “curative” this type of surgery happens when the cancer has been identified in one area and it’s likely that it can all be removed. It can be used with other methods, or on its own.
Debulking Surgery: This is when some, but not all of the cancer can be removed during one surgery. It’s often done when removing the tumor would be too harmful to the surrounding organs. The doctor may take out as much of the tumor as possible and then treat what’s left with radiation, chemotherapy, or other treatments.
Palliative Surgery: Palliative surgery is used to treat issues caused by advanced cancer that is further along in the process. Palliative surgery may also be used to treat pain when it’s hard to control with medicine.
Supportive Surgery: with this type of surgery, a supportive device is placed to help with the treatments. A good example is a vascular access device which makes the process less intrusive and painful for each treatment.
Restorative (reconstructive) Surgery: Reconstructive surgery helps improve the skin at the site where the treatment happened. It’s also used to restore the function of an organ or body part post-surgery.
Preventative (prophylactic) Surgery: Prophylactic surgery removes body tissue that has a chance of turning into cancer.

Radiation Therapy

Radiation is one of the most common forms of cancer treatment. It may be used alone or with other methods like surgery or chemotherapy. Other names for radiation treatment are radiation therapy, radiotherapy, irradiation, and x-ray therapy. Cancer affects the cells by making them duplicate at faster speeds.

Radiation works by making small breaks in the DNA inside cells, the breaks then can keep cancer cells from growing and dividing and kill them off. Cells that are nearby may be slightly affected but usually recover and work properly. Radiation is a local treatment that is used to treat the site where the cancer is in the body. Some radiation treatments (systemic radiation therapy) use radioactive substances that are given by vein or ingested.

Radiation helps people every day, with half of the population of cancer patients using it as treatment today. Most types of radiation therapy don’t reach all parts of the body, which means they’re not able to treat cancer that has spread to other places within the body. However, radiation therapy can still be used to treat many types of cancer either alone or with other treatments.

Chemotherapy

Chemotherapy defined actually means the treatment of any drug for any disease, but as we have come to know, this term often gets associated with cancer treatment. Chemo is considered a ”systemic” treatment because the drugs travel throughout the body. Then they can kill cancer cells that have spread (metastasized) to parts of the body far from the original (primary) tumor. If your care provider has recommended chemotherapy as an option to treat your cancer, it’s important to understand the goals of treatment when making your treatment decisions. The three main goals for chemotherapy in cancer treatment are:

Cure: if it’s possible curative cancer will be used to fully stop cancer from evolving.
Control: if curing is not possible, other methods may be sought out to control the spread of cancer. This helps the person to maintain their health and feel better long term.
Palliation: treating symptoms caused by cancer is called palliation. Chemotherapy is a palliative treatment for many people, meaning they may have advanced cancer but they are still able to receive the treatments for the patient to have a better quality of life.

Types of Cancer

A few types of cancer are most prevalent in children, which are leukemia, lymphoma, and brain tumors. Other types of cancer can occur in children but are much less prevalent such as bone cancer, liver cancer, nerve cancer, eye cancer, sarcoma (soft tissue cancer), kidney tumors, or other types of tumors. Common cancers that occur in adults such as lung, breast, or colon cancer are very rare in children or teens. Another difference is that cancer in children can spread at a much more rapid rate than in adults.

Leukemia

Leukemia is the most common type of cancer in children. It occurs in the blood cells of the body. Cells that would replicate into blood cells begin to mutate into cancer cells instead. Most children are diagnosed with acute leukemia, meaning the cancer is fast growing. Although it is much less common, leukemia can also be chronic. Generally, leukemia begins forming in the bone marrow and builds out from there, spreading through the blood and pushing out the normal, healthy cells. From there, it can spread throughout the body to organs, the central nervous system, lymph nodes, or other areas.

Lymphoma

Cancer that forms within the lymph system typically falls into two types: non-Hodgkin’s and Hodgkin’s. Non-Hodgkin’s lymphoma is most common in children. The lymph system runs through the neck in the lymph nodes, throughout the armpit, groin, spleen, and areas of the stomach and small intestine. Like other cancers, lymphoma begins to form in one area of the lymph system and quickly spreads to other areas of the body before it is found. Usually, children with lymphoma will present symptoms like swollen lymph nodes, night sweats, fever, weight loss, difficulty swallowing, or difficulty breathing.

Brain Tumors

Cells can begin to grow and form clusters anywhere in the body. Sometimes they are cancerous and sometimes they are benign. It is important that healthcare professionals understand the position, size, and type of tumor to know what treatment to proceed with or how it might affect your child. Brain tumors may present a variety of symptoms including, but not limited to, frequent or intense headaches, head pressure, sudden nausea or vomiting, vision problems, seizure, difficulty speaking, loss of balance, sudden weakness in one area of the body, memory issues, and more. Brain tumors are more common in children who have a family history of brain tumors.

Bone Cancer (Osteosarcoma)

Osteosarcoma is the most common type of bone cancer. It also accounts for nearly 3% of cancers in children. Osteosarcoma is one of the few cancers that actually begin in bones and sometimes spread (or metastasize) elsewhere, usually to the lungs or bones. It is oftentimes seen in teenage boys. Teens diagnosed with Osteosarcoma are often tall for their age, this suggests that rapid bone growth may lead to the disease.

Neuroblastoma

Neuroblastoma is a type of cancer that starts in early the nerve cells’ neuroblasts. Neuroblastoma is when the cancer cells grow out of control and become tumors. Most cases of neuroblastoma happen in infants and children younger than 5 years old. The success of treatment depends on many things, the child’s age, how much the disease has progressed, and the characteristics of the tumor.

Rhabdomyosarcoma

Childhood rhabdomyosarcoma is a disease in which malignant cancer cells form in muscle tissue. Rhabdomyosarcoma usually begins in muscles that are attached to bones and that assist in movement, but it may begin in many other places in the body as well. Rhabdomyosarcoma is the most common type of soft tissue sarcoma in children.

Retinoblastoma

Nerve cells in the retina sense light and send images to the brain and allow us to see. Retinoblastoma causes tumors (clumps of cells) to grow in the retina. This makes it so the eye can’t communicate with the brain as it needs to. Retinoblastoma can happen at any age, but most cases are in children younger than 2 years.

Preventing Childhood Cancer

If children develop cancer, it’s important to not jump to conclusions by thinking that their family is to blame. Lifestyle-related risk factors such as smoking aren’t often the cause of children’s cancer. A child can develop cancer for many different medical reasons that are not very often linked to the genealogy of the family either.

Risk Factors

Cancers can be caused by DNA changes that keep oncogenes turned on, or that turn off tumor suppressor genes. Oncogenes are genes that help cells grow, divide, or stay alive. Some children inherit DNA changes (mutations) from a parent that increase their risk of certain types of cancer. These changes exist within every child’s body and can often be tested in the DNA of different cells. Some of these DNA changes are linked specifically with an increased risk of cancer, while others can cause syndromes that also include other forms of health problems. However, most childhood cancers are not correlated to DNA at all. DNA that causes cancer can develop early in the child’s life or even before birth.

Coping with Cancer

The Nevada Childhood Cancer Foundation

One of the most difficult aspects of a cancer diagnosis is the emotional toll it takes on not only the patient, but their family, friends, and loved ones. It requires everyone to learn and grow together to learn different ways to cope as well as ways to help those providing care and treatment. In Southern Nevada, those looking for community support can reach out to a wonderful resource at The Nevada Childhood Cancer Foundation. It is always a good idea to ask yourself if you have found the support groups and counseling that are available to you and your family that might be beneficial.

NVCCF was created in 1993 by Dr. Ronald Oseas, the first child oncologist in Las Vegas, who identified the need for psycho-social services for ALL critically ill children and their families. He along with other caregivers went to work to provide support services and programs in the social, emotional, educational, financial, and psychological areas.

(NVCCF.org)

The NVCCF organizes fundraisers, hosts different events, and has many different worthy causes to support. If you’re a local in Las Vegas, be sure to check out their information about upcoming events, how you can support, or volunteer with them.

Camp Cartwheel

The stressors and weight of a cancer diagnosis and treatment are a heavy thing to bear for a child and their siblings. The NVCCF offers a camp experience to bring them a sense of independence and curiosity as they are able to explore and venture into nature.

The Nevada Childhood Cancer Foundation's Camp Cartwheel is an outdoor day camp for children ages 5 to 9 and an overnight camp for children ages 10 to 17. This experience is designed to offer children with cancer, sickle cell, renal disease, hemophilia, autoimmune disorders, and other critical illnesses, and their siblings a way to commune, connect and improve their ability to cope with the physical, mental and emotional obstacles posed by childhood disease.

The program is a medically supervised, cost-free camping experience for children with critical illnesses and their siblings, providing the opportunity to participate in a variety of fun camp activities and develop new ways to connect and improve coping skills. Campers form positive peer relationships and develop greater independence and self-esteem during the camp. Campers serve as role models for one another and begin to see themselves, for the first time, as strong capable leaders!

To learn more or to volunteer with the Nevada Childhood Cancer Foundation visit them online at www.nvccf.org

To get started with Camp Cartwheel visit them online at https://nvccf.org/camp-cartwheel/ and read through the details about the camp. You can send a child to camp with your donation or find out more about donating snacks, camping amenities, backpacks, and more.

The Nevada Childhood Cancer Foundation also has other supportive resources for families in need as they endure the hardships of cancer treatment. Their ORION Grant Fund supports families by offering to fund necessities like car payments, mortgage or rent payments, utilities, or healthcare coverage.

St. Jude Children’s Research Hospital

The mission of St. Jude is “to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment. Consistent with the vision of our founder Danny Thomas, no child is denied treatment based on race, religion, or a family’s ability to pay.” (https://www.stjude.org/about-st-jude.html?sc_icid=us-mm-missionstatement#mission) They offer treatment programs and treatment resources at no cost to families in need. Cancer is the leading cause of death by disease for children under age 14. Join their campaign to “Show Your Gold” by sharing a picture on social media wearing gold or representing childhood cancer awareness with a gold ribbon. The majority of funding for St. Jude comes from individual donors.

You can get involved and make a donation to help families in need and further their research efforts at https://www.stjude.org/donate/ccam.html?sc_icid=ccam-lp-donate-top.

Cure 4 the Kids Foundation

With the goal of aiding childhood cancer research and prevention, Cure 4 the Kids Foundation is a 501(c)3 organization and a division of Roseman University of Health Sciences with a mission to improve the quality of care for child patients of cancer and other catastrophic diseases.

“Our dedicated healthcare team is committed to compassionate, high-quality patient care offering comprehensive treatment options and customized treatment plans in a patient-centered, state-of-the-art cancer center located in Summerlin, serving Nevada and the surrounding region of the United States.” - https://cure4thekids.org/

This organization founded The Nevada Childhood Cancer Treatment Center in 2007 which offers families and kids a place to help them fight diseases, where no child is turned away. They offer many resources for parents and families to navigate care and treatment with plenty of information about understanding how to approach funding treatment or engaging in trials.

They accept donations in many different forms, including direct donations through their website or through partner organizations. They are committed to directing $.90 of every dollar toward funding programs and will remain in the local community.

https://cure4thekids.org/ways-to-help/donations/

To help us spread awareness about childhood cancer and its effects, it is important to share these resources with your community and promote the conversation about the options we have when facing difficulties like unexpected diagnoses.

For childhood survivors, it is important they continue to receive the care needed after treatment as well as monitor and recognize any symptoms of late effects in the future. Occupational, physical, and speech therapy can be incredible resources for parents to help their children’s development or address needs related to the effects of treatment or their overall mental health.

Be sure to get involved whichever way you can: donate, volunteer, research, or just share helpful information and promote awareness in your community.

Find additional resources in our archive to create new routines, manage stress, or promote development through play! View our resources section to learn more and find free resources for your child.