For a Child with Cancer
Your child has cancer – Canadian Cancer Society
Having a child with cancer is one of the biggest challenges a family can face. There’s no right or wrong way to react to the diagnosis. Many parents feel different emotions at one time or another. But with the help of the healthcare team, loved ones and other parents, you will find ways to cope.
The first feeling many parents say they feel is shock. Parents often describe feeling numb and dazed, as if they had the wind knocked them or had been hit over the head. In fact, shock and the feeling of numbness can serve a purpose.
They allow you some time to start to understand the news and also begin to deal with the emotions that come with it. Feeling shocked or numb can help to buffer painful feelings and fear that follow the diagnosis. As you work through your shock:
- Know that shock is a normal reaction that should pass with time.
- Seek comfort from your spouse, family and friends.
- Ask a friend or family member to go to appointments with you.
- Ask the healthcare team to repeat information.
- Take notes during meetings so that you can review them later.
- Ask if it’s OK to record important meetings with doctors.
- Talk about how you feel with nurses, social workers and counsellors.
Denial and disbelief
You may find it hard to believe that your child has cancer. Denial and disbelief are normal coping strategies that help to buffer and delay some of the more painful emotions that are yet to come. Through denial and disbelief, you gain a little bit of extra time to adjust to the reality you now have to face.
It’s OK if these feelings mean that you ask the healthcare team a lot of questions or even seek a second opinion. Ask and get answers to all your questions – the answers can reassure you. Many parents also find it helpful to talk to other parents about their experience.
Denial and disbelief are not a problem unless they stop you from making timely decisions with your doctor.
Fear and anxiety
Having a child with cancer may seem a crisis beyond your control. It’s normal to be afraid and anxious. At first, you may be most afraid that your child is going to die, be unhappy or be in pain.
Later on you may worry about things side effects or how your family is coping. You may be especially anxious at the time of diagnosis.
Fear of the unknown, fear of the impact of the cancer treatment on your child and an uncertain future are major causes of anxiety.
While having a child with cancer is always scary, you may find that your fear becomes more manageable after you have a treatment plan and start to follow it. Ways to manage your fear and anxiety include:
- Get accurate information from reliable sources, starting with your healthcare team.
- Figure out how much information is right for you. When it comes to information needs, everyone is different. Sometimes too much information can be scary. You may also need different kinds of information at different times.
- Develop a trusting relationship with the healthcare team and work with them to provide care for your child.
- Discuss fears and anxieties with the healthcare team – don’t be afraid to ask for information, explanations and reassurance.
- Talk about your fears and anxieties with other parents to see how they coped.
- Use your favourite ways to help relieve anxiety and tension or learn new ways to do it. Examples include being physically active, meditating, listening to music, deep breathing, getting outside or watching a funny movie.
- Be involved in your child’s care and focus your time and energy on what you can do to make them comfortable.
- Realize and accept that some things cannot be controlled.
- Find strength in your faith, religious beliefs or spiritual practices.
- Know that it isn’t your fault – or anyone else’s – that your child got cancer.
When someone you love is very ill, it’s very easy to get angry and want to blame someone or something. You may be angry at the doctor for diagnosing your child with cancer, your friends for not helping enough or your employer for not being flexible enough. You may be angry at yourself, your spouse or even your sick child.
You may feel that you should hide your anger. It is OK to feel angry, but you do need to find a way to let out that anger in a way that respects and doesn’t hurt others. Unresolved anger can take away the energy you need for coping with the diagnosis and upcoming treatment.
To deal with anger you can:
- Recognize why you are angry and find a way to accept it.
- Try to describe angry feelings rather than act on your anger.
- Let the anger out. Find a private space to scream, punch a pillow, shout or cry – anything that is not harmful but will help release the anger you have inside.
- Do something physical such as walking, playing a sport, gardening or any other exercise to relieve the tension.
- Express feelings by writing a letter that doesn’t get sent or by keeping a journal.
- Talk with other parents who have dealt with similar feelings.
- Talk about your angry feelings with someone on your child’s healthcare team.
- Make an appointment with your own doctor to discuss these feelings and find ways to deal with them.
It’s quite normal to feel guilty that your child has cancer, as if it’s somehow your fault. Your child’s cancer is not a result of something that you said or did. It is not a result of something your child touched or ate. It is no one’s fault. Most cancers in children have no known cause or are caused by factors that you do not control (such as genetic mutations).
You’ve probably heard that early detection is very important for treating cancer. Don’t let this make you feel guilty that you didn’t notice symptoms sooner or take your child to a doctor more quickly. Most cancers that occur in children happen very quickly and have symptoms that often resemble other common childhood illnesses.
Medical studies suggest that the success of treatment in most cases of childhood cancer depends more on the type of cancer and finding the right treatment and less on early diagnosis. Cancer is rare in children and most often takes some time to diagnose. To deal with guilty feelings you can:
- Talk to the healthcare team.
- Ask any questions you may have about what caused the cancer, but accept that there may not be an answer.
- Talk about your feelings with other parents of children with cancer.
- Realize that finding a reason for something is not going to change the fact that it has happened. Try to focus on dealing with the decisions and tasks that must be faced when a child is diagnosed with cancer.
Grief is not just about death. Grief is a normal response to distress or loss. In general, parents grieve the loss of a normal life, realizing that life may never be the same again. The grieving process may vary from person to person. How parents grieve and how long parents grieve will be different for everyone.
As you deal with your grief, you can:
- Cry to help relieve tension. Frequent crying is fine. It doesn’t mean that you are weak or that you can’t cope.
- Talk to other parents about their grief and what helped them deal with it.
- Seek help from a social worker, counsellor, your own doctor, spiritual care worker or other members of the healthcare team.
Sadness, depression and anxiety
It is normal for parents to feel a deep sadness and constant worry after a child is diagnosed with cancer. This is a traumatic and unexpected event that has drastically changed your family’s life. Your hopes and dreams for a happy, healthy, carefree child have been dashed. Thinking about what the upcoming weeks and months will bring can add to that sadness.
Parents may suffer from depression or anxiety as they start to realize the impact of a child’s cancer diagnosis on the family. You may think about all the decisions you have to make and everything you have to do. Hopelessness and despair can easily set in.
You may find it hard to sleep or eat. You may feel you don’t have the energy to do everything that needs to get done. Attention spans are short. The ability to think clearly and to care for yourself become monstrous tasks. Your worries may feel overwhelming.
Unfortunately, there is no hiding from these painful emotions. Feeling sad, depressed or worried will come up time and again during your child’s treatment and recovery. Some parents report having these feelings months and even years after the child has finished treatment.
Ways to cope include:
- Try to eat right, get enough sleep and look after yourself in order to be able to look after your child.
- Ask for help and accept offers from friends and loved ones to help deal with the practical aspects of everyday life and lessen the burden of daily demands (for example, offers to provide meals, carpool kids to activities or babysit). Everyone needs more support to get through this.
- Express your feelings through talking, writing and crying.
- Get support from a social worker, counsellor, your own doctor, spiritual care worker or other members of the healthcare team.
Severe depression doesn’t go away on its own. You may need medicine, therapy or both. Talk to a doctor if you need medical help.
Cancer in Children
Cancer is a leading cause of death for children and adolescents worldwide. In high-income countries more than 80% of children with cancer are cured, but in many LMICs only 20% are cured [2-3].
The reasons for lower survival rates in LMICs include an inability to obtain an accurate diagnosis, inaccessible therapy, abandonment of treatment, death from toxicity (side effects), and excess relapse, in part due to lack of access to essential medicines and technologies addressing each of these gaps improves survival and can be highly cost-effective [2-3].
What causes cancer in children?
Cancer occurs in people of all ages and can affect any part of the body. It begins with genetic changes in a single cell that then grows control. In many cancers, this results in a mass (or tumour). If left untreated, cancer generally expands, invades other parts of the body and causes death.
Un cancer in adults, the vast majority of childhood cancers do not have a known cause. Many studies have sought to identify the causes of childhood cancer, but very few cancers in children are caused by environmental or lifestyle factors. Cancer prevention efforts in children should focus on behaviours that will prevent the child from developing preventable cancer as an adult.
Some chronic infections are risk factors for childhood cancer and have major relevance in low- and middle-income countries. For example, HIV, Epstein-Barr virus and malaria increase the risk of some childhood cancers.
Other infections can increase the child’s risk of developing cancer as an adult, so it is important to be vaccinated and other pursue other methods such as early diagnosis or screening to decrease chronic infections that lead to cancer, whether in childhood or later.
Current data suggest that approximately 10% of all children with cancer have a predisposition because of genetic factors. Ongoing research is needed to identify factors impacting cancer development in children.
Improving outcomes of childhood cancer
Because it is generally not possible to prevent cancer in children, the most effective strategy to reduce the burden of cancer in children is to focus on a prompt, correct diagnosis followed by effective therapy.
When identified early, cancer is more ly to respond to effective treatment and result in a greater probability of survival, less suffering, and often less expensive and less intensive treatment.
Significant improvements can be made in the lives of children with cancer by detecting cancer early and avoiding delays in care.
A correct diagnosis is essential to treat children with cancer because each cancer requires a specific treatment regimen that may include surgery, radiotherapy, and chemotherapy.
Early diagnosis consists of 3 components:
- awareness by families and accessing care
- clinical evaluation, diagnosis and staging (determining the extent to which a cancer has spread)
- access to treatment
Early diagnosis is relevant in all settings and improves survival for many cancers.
6 Programmes to promote early and correct diagnosis have been successfully used in countries of all income levels, often through collaborative efforts of governments, civil society and non-governmental organizations, with vital roles played by parent groups. Childhood cancer is associated with a range of warning symptoms that can be detected by families and by trained primary health care providers.6
Screening is generally not helpful for childhood cancers. In some select cases, it can be considered in high-risk populations.For example, some eye cancers in children can be caused by a mutation that is inherited, so if that mutation is identified in the family of a child with retinoblastoma, genetic counseling can be offered and siblings monitored with regular eye examination early in life.
Genetic causes of childhood cancers are relevant in only a handful of children with cancer. There is no high-quality evidence to support population-based screening programmes in children.
A correct diagnosis is essential to treat children with cancer because each cancer requires a specific treatment regimen that may include surgery, radiotherapy, and chemotherapy. Access to effective diagnosis, essential medicines, pathology, blood products, radiation therapy, technology and psychosocial and supportive care are variable and inequitable around the world.
However, cure is possible for more than 80% of children with cancer, in most cases with inexpensive generic medications that are listed on the WHO List of Essential Medicines (EML).
WHO EML for children, defined as those meeting the priority health care needs of the population, includes 22 cytotoxic or adjuvant medicines and 4 hormone treatments for childhood cancer.
Children who complete treatment require ongoing care to monitor for cancer recurrence and to manage any possible treatment-related toxicity.
Palliative care relieves symptoms caused by cancer and improves the quality of life of patients and their families. Not all children with cancer can be cured, but relief of suffering is possible for everyone.
Pediatric palliative care should be appropriately considered as a core component of comprehensive care starting when illness is diagnosed, and continued regardless of whether or not a child receives treatment with curative intent.7
Palliative care programmes can be delivered through community- and home-based care to provide pain relief and psychosocial support to patients and their families. Adequate access to oral morphine and other pain should be provided for the treatment of moderate to severe cancer pain, which affects more than 80% of cancer patients in the terminal phase.
In 2018, WHO launched the Global Initiative for Childhood Cancer with partners to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programmes.
The goal is to achieve at least 60% survival for all children with cancer globally by 2030. This represents an approximate doubling of the current cure rate and will save an additional one million lives over the next decade.
The objectives are to:
- Increase capacity of countries to deliver best practices in childhood cancer care
- Prioritize childhood cancer and increase available funding at the national and global levels
WHO and the International Agency for Research on Cancer (IARC) collaborate with the International Atomic Energy Agency (IAEA) and other UN organizations and partners, to:
- increase political commitment for childhood cancer diagnosis and treatment;
- support governments to develop high-quality cancer centres and regional satellites to ensure early and accurate diagnosis and effective treatment for children with cancer;
- develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship care inclusive of the needs of childhood cancers;
- improve access to affordable and essential medicines and technologies;
- support governments to safeguard families of children with cancer from financial ruin and social isolation as a result of cancer care.
This initiative is part of the implementation of the World Health Assembly resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.
- Steliarova-Foucher E, Colombet M, Ries LAG, et al. International incidence of childhood cancer, 2001-10: a population-based registry study. Lancet Oncol. 2017;18(6):719-731.
- Gupta S, Howard SC, Hunger SP, et al. Treating Childhood Cancer in Low- and Middle-Income Countries. In: Disease Control Priorities, volume 3. http://dcp-3.org/chapter/900/treating-childhood-cancers-low-and-middle-income-countries
- Howard SC, Zaidi A, Cao X, et al. The My Child Matters programme: effect of public-private partnerships on paediatric cancer care in low-income and middle-income countries. Lancet Oncol. 2018;19(5):e252-e266.
- Zhang J, Walsh MF, Wu G, Edmonson MN, Gruber TA, et al. Germline Mutations in Predisposition Genes in Pediatric Cancer. N Engl J Med. 2015 Dec 10;373(24):2336-2346.
Who Treats Children With Cancer?
Experts from different disciplines (medicine, nursing, social work, and many others) are part of the cancer care team that helps patients and families. Some are involved before diagnosis, and many stay involved for months and even years after treatment.
Team members offer different services and programs from planning and coordinating details of treatment to supporting the social and emotional needs of children with cancer and their families. They all work together to figure out what each patient and family needs to get healthy and stay healthy..
While in the hospital, patients and families will see some team members every day. Others will only come when their help is needed with certain issues. During clinic visits the same or even more team members may be available. When patients are at home, team members generally stay in touch. They might offer help by phone or arrange community care.
Every treatment center is unique, so teams will have different members in different settings. Just before or just after diagnosis, parents are usually told about, or introduced to, most members of the cancer care team. All teams have doctors, nurses, and social workers.
Most pediatric cancer treatment centers also include psychologists, recreation therapists or child life workers, teachers, and chaplains. Most teams think of parents as team members and want them to have an active role in caring for their child.The patients, whether they are children or teens, also are part of the team in different ways depending on their age and level of maturity..
Here are some team members you might meet. Those most commonly seen are at the top of the lists.
Types of doctors who help care for children with cancer
Pediatric oncologist: A doctor who specializes in cancers of children. (Pediatric means dealing with the health of children. Oncology means cancer.) They generally are board-certified, which means they’ve passed written national exams.
They plan and direct cancer treatment. In a teaching hospital they serve as the doctor in charge. There might be more than one on the team, in which case they might rotate or switch places from one day to the next.
They often work closely with physician assistants (PAs) and nurse practitioners (discussed in the next section).
Pediatric hematologist: A doctor who specializes in diseases of the blood and blood-forming tissues of children (Hematology means blood disease.)
Pediatric hematology or oncology fellow: A pediatrician training to become a hematologist or oncologist
Pediatric resident: A doctor training to become a pediatrician. They are in teaching hospitals, usually spending a certain length of time on the hematology or oncology service
Medical students: Although not yet doctors, third and fourth year medical students in teaching hospitals are assigned monthly rotations on the hematology or oncology services and help care for patients
Radiologist: A doctor with special training in diagnosing diseases by reading x-rays and other types of imaging studies, CT scans and MRIs
Pediatric surgeon: A doctor who treats medical problems in children with surgery. Some surgeons specialize in different parts of the body. For example, thoracic surgeons operate on the chest.
Neurosurgeon: A doctor who specializes in operations on the brain, spine, or other parts of the nervous system
Neurologist: A doctor who treats problems of the nervous system
Orthopedic surgeon: A surgeon who specializes in diseases and injuries of the bones
Pathologist: A doctor who specializes in diagnosing and classifying diseases by lab tests, such as looking at tissue and cells under a microscope. The pathologist decides if a tumor is cancer, and, if it is, the exact cell type.
Psychiatrist: A medical doctor who specializes in mental health and behavioral disorders. Psychiatrists prescribe medicines and can also provide counseling.
Endocrinologist: A doctor who specializes in diseases related to the glands of the endocrine system, such as the thyroid, pancreas, and adrenal glands
Gynecologist: A doctor who specializes in women’s health and the female reproductive system
Anesthesiologist: A doctor who specializes in giving medicines or other agents that prevent or relieve pain, especially during surgery
Other doctors in the medical center and its clinics may play a part in caring for children and teens with cancer, depending on the diagnosis, treatment plan, or symptoms that develop during the course of treatment. All work closely with the basic cancer care team to coordinate care.
Other professionals who may help care for a child or teen with cancer
There are many professionals and specialists other than doctors who may work with your child or family. Here are just a few more you may meet.
Physician assistants (PAs): These are certified and licensed medical professionals with master’s or doctoral level degrees. Physician assistants practice medicine on teams with doctors and other health care professionals, providing a wide range of services. They may specialize in certain diseases or fields of medicine depending on their training and experience.
Pediatric Nurse Practitioner or Family Nurse Practitioner (PNP or FNP; also called Advanced Practice Registered Nurses or APRNs): Registered nurses with a master’s or doctoral degree, special training, and certification in caring for children; they work closely with the doctor in planning care. The nurse practitioner may perform medical tests such as spinal taps and often works closely with the family to teach about the child’s cancer. Nurse practitioners are authorized by their states to perform expanded functions which may include writing prescriptions, diagnostic testing, and prescribing treatment.
Nurses: doctors, nurses have different roles and titles their education and training. Nurses help care for and treat children and teens with cancer.
They play an important part in teaching the patient and family about cancer and its physical and emotional effects.
They also help set up care for the patient in his or her home community when referrals are made to home health agencies.
Teams of nurses may include:
Registered nurses (RN): Nurses with associate or bachelor degrees who are licensed by their states to practice nursing. They give medicines (often including chemo), start and monitor IV medicines, take vital signs, and provide other hospital and clinical care. They also provide patient and family education. NPs, OCNSs, and CPONs are also RNs.
Certified Oncology Clinical Nurse Specialists (OCNS): Registered nurses with a master’s degree and certification in oncology nursing who specialize in the care of cancer patients. Oncology clinical nurse specialists may prepare and give treatments, monitor patients, prescribe and provide supportive care, and teach and counsel patients and their families.
Certified Pediatric Oncology Nurses (CPONs): Registered nurses who specialize in working with pediatric cancer patients, and who have passed national certification exams.
Oncology social worker: This person has a master’s degree in social work and is an expert in coordinating and providing non-medical care to people with cancer. The oncology social worker provides counseling and assistance to patients and their families.
They can help you and your child talk with the cancer care team and they can speak up about issues that are important to you. They can also help with issues financial problems, housing (when treatments must be given at a facility away from home), and finding child care.
Recreational therapists or child life specialists: These team members encourage children and teens to take part in activities designed to maintain and improve physical and mental health.
They also help teach children about their cancer and treatment. The activities they lead also provide distraction and help relieve stress and anxiety during treatment, tests, and procedures.
These experts work closely with social workers, team psychologists, and psychiatrists. They generally have advanced college degrees.
School teachers: Teachers often are part of comprehensive care teams and must have the same training, credentials, and state licenses as public school teachers. They bridge the gap between the hospital and school, and teach students plans outlined by the patients’ teachers in their regular schools. They are usually available in both inpatient and outpatient settings.
Dietitians: Experts in the area of food, nutrition, and diet. A registered dietitian (RD) has at least a bachelor’s degree and has passed a national exam.
Radiation therapists: Professionals with special training to work the equipment that delivers radiation treatment.
Pharmacologists: Professionals trained in understanding the properties, dosing, and uses of drugs. They may consult with the cancer team about the uses, reactions, and interactions of drugs used to treat cancer and manage symptoms.
Pediatric psychologists: Psychologists generally have doctoral degrees and are licensed to practice after passing a written exam. Some psychologists specialize in oncology. They help patients understand and talk about their cancer.
They are skilled in helping young people use a variety of techniques to get through surgery, radiation treatment, chemo, nausea, pain, IVs, shots (injections), procedures, scans, and other tests.The psychologist also might work with patients, parents, and other team members to look at educational needs and help with school issues. They evaluate a child’s mental and emotional state and provide counseling to children and teens to help them cope with their illness.
They often refer patients to mental health providers and services in the family’s home community. There usually is a fee associated with their professional services, but insurance could cover at least part of it.
Chaplains or pastoral counselors: These counselors help care for the spiritual needs of the patient and family and are available in most medical centers. They often coordinate their efforts with a family’s pastor or spiritual caregiver.
Along with a divinity degree and other advanced degrees, chaplains often have had special training in working with the ill and dying. Pastoral counselors have special training in counseling, as well as in divinity or theology.
In teaching hospitals, they may be involved in teaching and training.
Every cell in the body has a system that controls its growth, interaction with other cells, and even its life span. When certain cells lose that control and grow in a way that the body can no longer regulate, it's called cancer.
Different kinds of cancer have different signs, symptoms, treatments, and outcomes, depending on the type of cell involved and how fast the cells grow.
What Is Cancer?
All kinds of cancer progress in the same way — cells grow control, develop abnormal sizes and shapes, exceed their typical boundaries inside the body, and destroy neighboring cells. ln time, cancerous cells can spread (metastasize) to other organs and tissues.
As cancer cells grow, they demand more and more of the body's nutrition. Cancer takes a person's strength, destroys organs and bones, and weakens the body's defenses against other illnesses.
Cancer is uncommon in children, but can happen. The most common childhood cancers are leukemia, lymphoma, and brain cancer. As kids enter the teen years, osteosarcoma (bone cancer) is more common.
Most of the time, doctors don't know why kids get cancer.
The things that cause cancer in kids are usually not the same ones that cause cancer in adults, such as smoking or exposure to environmental toxins.
In children, a genetic condition, such as Down syndrome, can sometimes increase the risk of cancer. Kids who have had chemotherapy or radiation treatment for cancer are more ly to get cancer again.
In most cases, however, childhood cancers come from random mutations (changes) in the genes of growing cells. Because these changes happen randomly and unpredictably, there is no effective way to prevent them.Sometimes, a doctor might spot early symptoms of cancer at regular checkups. However, some symptoms of cancer (such as fever, swollen glands, frequent infections, anemia, or bruises) can happen with other childhood infections or conditions that are more common than cancer. Because of this, both doctors and parents might suspect other childhood illnesses when cancer symptoms first appear.
Once cancer has been diagnosed, it's important for parents to seek help from a medical center that specializes in pediatric oncology (treatment of childhood cancer).
The treatment of cancer in children can include surgery (to remove cancerous cells or tumors), chemotherapy (the use of medical drugs to kill cancer cells), radiation (the use of radiant energy to kill cancer cells), and bone marrow transplant.
Doctors may use one or more of these treatments for a child who has cancer. The type of treatment needed depends on the child's age, the type of cancer, and how severe the cancer is.
For children with leukemia or lymphoma, surgery is not usually the main treatment. This is because leukemia and lymphoma involve the circulatory system and the lymphatic system, two systems that are located throughout the body. This makes it hard to treat these cancers by operating on just one area.
However, in children with solid tumors that haven't spread to other parts of the body, surgery can often effectively remove cancer when used in combination with chemotherapy and/or radiation.
Chemotherapy (chemo) is medicine that can eliminate cancer cells in the body.
Kids with cancer can take the chemotherapy medications intravenously (through a vein) or orally (by mouth).
Some forms of chemotherapy can be given intrathecally, or into the spinal fluid. The drugs enter the bloodstream and work to kill cancer cells throughout the body.
How long chemo lasts and the type and number of different drugs used depends on the type of cancer and how well a child's body responds to the treatment. Every child's treatment is different, so a child may receive daily, weekly, or monthly chemotherapy treatments. The doctor also may recommend cycles of treatment, which allow the body to rest and recover between periods of chemo.
All of the medicines used in chemotherapy carry the risk of both short-term and long-term problems. In the short term after getting chemotherapy, a child might have:
- hair loss
- fatigue (tiredness)
- abnormal bleeding
- kidney damage
- menstrual problems
Because chemotherapy destroys bone marrow (the spongy tissue inside some bones that helps the immune system by making blood cells), it can increase the risk of infections. Some drugs irritate the bladder and may cause bleeding into the urine, hearing loss, and liver damage. Others may cause heart and skin problems.
Longer-term effects can include infertility, growth problems, organ damage, or increased risk of other cancers. Doctors always take side effects into account before giving chemotherapy and may use medicines to protect patients against as many of the side effects as possible.
Radiation is one of the most common treatments for cancer. A child who receives radiation therapy is treated with a stream of high-energy particles or waves that destroy or damage cancer cells. Many types of childhood cancer are treated with radiation along with chemotherapy or surgery. Radiation has many potential side effects (such as increased risk of future cancer and infertility).
Bone Marrow Transplants
Kids with certain types of cancer may receive bone marrow transplants.
If a child has a type of cancer that affects the function of blood cells, a bone marrow transplant (along with chemo to kill the defective cells) may allow new, healthy cells to grow.
Bone marrow transplants are also sometimes used to treat cancer that does not involve blood cells because they allow doctors to use higher doses of chemotherapy than a child would normally be able to take.
Coping With Cancer
The main goal when treating kids with cancer is to cure them. This takes priority over everything else, even if it means unwanted side effects as a result of treatment. Thankfully, many medicines and therapies can make kids more comfortable while undergoing treatment for cancer.
When possible, kids should be involved with their own cancer treatment. Talk to your child in language he or she will understand and explain the facts about the specific type of cancer and its effects.
However, when cancer affects younger children — toddlers and those younger than age 4 — simply telling them that they are “sick” and need “medicine” to get better may be enough of an explanation.
For all age groups, the goal is to prevent fear and misunderstanding.Many kids might feel guilty, as if the cancer is somehow their fault. Psychologists, social workers, and other members of the cancer treatment team can be a great help in reassuring and helping them with their feelings.
If your child is diagnosed with cancer, look to the cancer treatment team to help guide your family through the pain, uncertainty, and disruptions caused by cancer.
If necessary, the team can also contact or visit your child's school to explain the diagnosis to teachers and classmates.
Replacing fear and misunderstanding with compassion and information is an important part of helping kids with cancer cope with the illness.
The diagnosis and treatment of childhood cancers takes time, and there are both short-term and long-term side effects. But thanks to medical advances, more and more kids with cancer are finishing successful treatment, leaving hospitals, and growing up just everybody else. Today, more than 80% of all children with cancer live 5 years or more.
Making a difference for children with cancer (11 min read)
In a large, open room at Korle Bu Children’s Hospital in Accra, Ghana, Charlotte sits on one of the cots; her daughter, Rebecca, leans against her. “For months, Rebecca had been weak,” Charlotte explains. In their village, they treated Rebecca for malaria; when that didn’t work, they tried treating her for dengue.
“Rebecca only got worse,” her mother says. As time passed, Rebecca could not eat nor walk. After advice from a regional nurse, Charlotte borrowed money to pay for a hired car to bring them to the city of Accra, specifically to Korle Bu, which is a teaching hospital. They wanted an answer.
They got one they did not fully understand, yet feared: cancer.
With the diagnosis came new worries, Charlotte explains: “Will Rebecca’s treatment even work?” And how to pay for it, find a place to stay, make up for missing time from work? After the diagnosis, Rebecca’s father disappeared; her brothers and sisters had stayed behind in their village, and they, too, needed care.
As her mother speaks, Rebecca continues leaning against her. She knows the story, of course. But neither she nor her mother know how the story will end. This is a situation no parent wants to be in, no child should be aware of. Charlotte pauses. Despite everything, she says firmly, they are still here at Korle Bu, and “there is hope.”
Five among millions
There have been significant odds against a Ghanaian parent or child patient feeling hope. While the nation’s healthcare system, including in pediatric oncology, has made progress, much more needs to be done.
One clear example where more work is needed is the lack of medical capacity: In Ghana’s current population of over 27 million, there are only five children’s oncologists in total, two of them working at Korle Bu.
Their work is difficult, however, not the least because of outcomes.
“In developed countries, 80% of children now survive a cancer diagnosis, but in developing countries Ghana, it's still only about 10%,” explains Jon Rosser, the Chief Executive of World Child Cancer, a London-based non-profit that provides support to the children’s oncologists at Korle Bu and at hospitals in other developing countries by improving access to quality treatment and support for children with cancer and their families. “In our programs, we can already raise that survival rate to around 60%.”
The geography of cancer
Improving childhood cancer treatment in Ghana is a complex task.
While this nation is lauded for its rising GDP, economic development and regional prosperity, “much more needs to be done,” says Peter Stenico, Global Head of Oncology at Sandoz, “but this nation is not at the top of the list regarding international aid.
” According to 2016 OECD data, Ghana received only about 2.8% of international aid for Africa.1 Ghana’s 2017 international aid – USD 1.662 billion – is almost equal to its ten-year average amount (USD 1.621 billion), despite a population increase of six million people during this time.2
Ghana’s rising GDP does not cover the gaps in international aid – and this underfunding is worsening the healthcare access situation in the country. Perhaps the most visible and dramatic consequence of this uneven access is a lack of proper diagnosis and treatment of cancers among children.
In 2003, Ghana created the National Health Insurance Scheme (NHIS), which covers approximately 10 million people. Almost 70% of the members pay no premiums, including the elderly and children under 18.3,4The rest cover for the rising healthcare costs in the country. However, children’s cancer treatments are not covered by the National Health Insurance.An official at the NHIA, the insurance program’s governing agency, cited the reason as the “high cost of treatment” which could lead to the“collapse of the whole (health insurance) system.5 The estimate for treating a common childhood cancer a lymphoma is about USD 400; a kidney or eye cancer treatment is estimated at about USD 910.
10 For many Ghanaians, where the per capita income is USD 4,600 6, these out-of-pocket costs are already steep. And for many Ghanaian families, the total treatment costs – which means medicine as well as travel expenses, temporary lodging, time-off from work and childcare for other family members – makes treatment prohibitive. Dr.
Tim Eden, a patron and founder of World Child Cancer, explains, “Even today, we still only see about one-third of the children we expect to.”
Finding solutions – and then finding more of them
Jon Rosser, Tim Eden and the World Child Cancer team have been working to make immediate changes to the low survival rate in Ghana and other developing countries. To accomplish this, World Child Cancer works in two ways.
First, the organization creates and maintains twinning partnerships between cancer wards in hospitals of developed and developing nations. World Child Cancer also provides direct support for medical facilities in Ghana.
This means funding access to essential medicines and services which would otherwise not be available – from chemotherapy supplies to nutritional supplements, as well as transportation costs, community awareness initiatives, medical equipment and even essential staff roles.
“And to reduce the most common cause of initial treatment refusal or failure to complete treatment, namely lack of family finances, we have provided subsidies for some medicines,” Tim Eden adds.
In 2016, Sandoz began funding a pilot program to support World Child Cancer’s efforts in the Philippines; the program expanded in 2017 to additional nations, including Ghana. “In a country Ghana, the whole access issue is more than medicines. It’s about creating awareness, then building capacity and then only comes medicines,” adds Peter Stenico from Sandoz.
Improving all access areas
The first area of access that must be developed is creating awareness. This includes being able to recognize the signs of cancer – and even giving the condition a name.
While English is the official language of Ghana, there are more than 250 languages and dialects spoken in the nation.
7 According to the Lancet Oncology, “Most indigenous African languages do not even have a word for cancer.”8Tim Eden explains how World Child Cancer is addressing this. “We must concentrate even more on educating health professionals and the public about the signs and symptoms of childhood cancers, in order to speed up diagnoses and ensure that all children get a chance of treatment and potential cure.”
A second area of access to improve is capacity building, meaning increasing the number of facilities and staff specializing in oncology. About 45% of the nation’s population still lives in rural areas, making access to fully-trained physicians more difficult.
But should these children and their families come to a major medical center, as mentioned, there is a lack of physicians: overall, in Ghana, and Africa, medical school graduates have historically left to practice medicine in wealthier nations, at an estimate of 15% per year.9
World Child Cancer’s Jon Rosser points to the third access factor – improving the safety and efficacy of medicines generally, and particularly for children’s cancer. “If we can get patients into the medical facilities, counterfeit and contaminated medicines lead to poor outcomes and even public distrust of the medical community.”
Solutions that bring greater access to medicines will require joint efforts. In treating cancer, the matter of using uncontaminated, authentic drugs is particularly crucial, confirms Eden.
“Pediatricians are worried in general about whether the drugs they receive are authentic. We need to focus on making medications available in the right quantities, accessible, affordable and of certified quality,” adds Eden.
He states that World Child Cancer’s collaboration with Sandoz is particularly important to improving this.
The path forward
“This work would be really demoralizing if we didn’t see progress,” says Rosser. “But those days are behind us. We can make an impact now. And if we know we can help children and we know how, then we have a moral imperative to do so.”
In the long-term, more systematic change is needed to stabilize the treatment of children’s cancer, he adds: “We need to work hard with partners to raise the profile of children's cancer and advocate for governments to give more priority to childhood cancer.”
If we know we can help children with cancer and we know how, then we have a moral imperative to do so.
Jon Rosser, World Child Cancer
Peter Stenico from Sandoz agrees. “We are supporting discussions with governments, health departments and other companies to make access happen.In Ghana, we’ve been attending meetings with the government, the health department and regional groups. We’re all bringing in factors that must be considered to make pediatric oncology, and healthcare overall, available and affordable.
More of us need to share resources and information, to establish a lasting solution.”
In the family room of Korle Bu Hospital, Rebecca and her mother Charlotte remain sitting on a cot. “Treating Rebecca will be a long process,” Charlotte explains as nurses enter. For the first time, mother and daughter both smile. “There is help,” Charlotte adds, as though she is reminding herself. “And I am hopeful,” she repeats, keeping Rebecca close.