A Focus on Pediatric Cancer Pain – September is National Pain Awareness Month

A Focus on Pediatric Cancer Pain

September is National Pain Awareness Month

Research, treatment and carePain has no boundaries within the body; it also does not discriminate about who it affects. National Pain Awareness month makes it clear that pain impacts both children and adults equally. Pain knows no limits within the body. Pain management is one of the top reasons Americans visit health care professionals each year. As we focus on pain awareness this month, let us pay close attention to the pain pediatric cancer patients suffer. What are some causes, and what are ways to relieve the agony that falls on many sick children each day.

Causes of Pain in Pediatric Cancer Patients

The quality of a child’s life dramatically changes once cancer invades their body. One devastating side effect is pain, and this discomfort can last even after cancer is in remission. Aching, stabbing, or throbbing, the sensation can vary, but the impact is overwhelming. 

Points of pain in body

There can be many reasons for pain. The type of cancer can influence the level of pain. The stage of the disease and a child’s tolerance level for pain all play a role in how pain will alter a child’s life. Other factors such as age, developmental status, or prior history with pain can determine how much a child can tolerate. What can be challenging is determining the level of pain. Some young children will have difficulty expressing the level of pain they have. 

St. Jude Children’s Research Hospital provides extensive information about diagnosing and managing pain in childhood cancer patients. Every child’s needs are different, so it’s essential to reach out to the child’s care team as soon as they express their discomfort in words or body language.

Chronic and Acute Pain

If there’s anything worse than living with pain, it’s having to watch your child endure it daily during cancer treatments and feeling powerless to alleviate their suffering. Pain is the body’s way of warning that there is an issue that needs attention. Pain occurs throughout the body and starts in the receptor nerve cells under the skin and within organs. There are two types of pain, acute or chronic. Acute pain has a clear beginning and end. This can be a result of a particular cancer treatment and end within a few days to two weeks. The pain is generally tissue, stomach, or nerve-related and temporary. With time and appropriate pain treatment, acute pain from cancer treatments will go away.

Chronic pain is present for most days or every day and lasts for 12 weeks or longer. It can be a pain so unbearable that it can affect daily life. As a parent, you want to do everything within your power to ensure that your child is pain-free, so you do all you can to make sure they get the appropriate treatment during and after cancer treatment for their pain. Chronic pain can last months or years after cancer treatment if radiation, transplant, bone-related surgery, or particularly harsh and high-dose chemo is part of a child’s cancer treatment.

It’s natural to feel down when you have a child with a chronic condition, and it’s not uncommon for parents of a cancer child to be depressed themselves. In fact, parents of children with chronic conditions displayed small to moderate elevations of depressive symptoms compared with parents of healthy children, according to a meta-analysis of 460 relevant studies published in the Journal of Pediatric Psychology. Overall, about 5% of children in the United States have chronic pain, says Kern Olson, PhD, a clinical health psychologist with a specialty in pain management.

Pain Sources in Pediatric Cancer PatientsHolding hands with patient

The following are some pain sources in pediatric cancer patients:

  • An enlarged tumor that is pressing on body organs or nerves
  • Side effects from surgery or other cancer treatments such as chemotherapy, radiation treatment, or cancer-fighting medication
  • Cancer cells have metastasized and spread to other areas of the body
  • Poor blood circulation causing blocked blood vessels
  • A bacterial infection affects nerve cells

Determining a child’s pain level can be complicated depending on their age.  Parents and doctors utilize some valuable methods, and those are as follows:

Riley Infant Pain Scale

Faces of pain

Numeric pain rating

Pain Management Options for Cancer Kids

On the surface, pain can seem to be only skin deep, but overwhelming pain can lead to emotional and cognitive issues. Chronic pain can have a tremendous effect on a child’s mind leading to anxiety and depression. Just as the pain has many causes, there are many treatment options to ease the suffering. The options fall into two different categories, medicated and non-medicated options.

Medication Options:

  • Mild pain relievers, such as over-the-counter, orally taken ibuprofen or Tylenol.
  • Topical anesthetics can be numbing creams or patches placed on the skin.
  • Potent opioids such as morphine or oxycodone.
  • Sedation, generally given Intravenously (IV), through a needle in a vein, can include:
    • Mild sedation for relaxation or brief sleep.
    • Full general anesthesia, a patient sleeps and is not aware of the procedure.

Many types of medication can have drastic side effects, so consult a medical professional before deciding which ones to administer to your child.

Non-medicated options:

  • Relaxation techniques such as deep breathing and meditation can aid in stress reduction and muscle relaxation, alleviating some pain.
  • Distraction therapy can be helpful for children of all ages; babies can be distracted with colorful moving objects while older children can watch videos or listen to music.
  • Cold and Heat therapy
    • Cold from an ice pack can reduce inflammation and swelling, leading to a reduction in pain.
    • Heat from a warm towel, bath, or heating pad and help increase blood flow, reducing pain.
  • Exercise-depending on strength level, simple walking or biking can strengthen muscles and loosen stiff joints.
    Here to Serve, Here for SupportPain gauge in red zone

    Few Americans even know that September is National Pain Awareness Month. But if you ask the average American if they suffer from pain, they may be able to tell you stories about the aches they endure daily. The pain caused by cancer is brutal. It is heartbreaking for a parent to see their child in so much pain. A parent may feel helpless in this situation. National Pain Awareness Month is an opportunity for parents to control how their child’s care team manages pain. Parents have the power to research options and ask health professionals specific questions about treatment choices. At Here to Serve, we cannot take your child’s pain away, but we can help ease a parent’s burden by offering guidance and access to our extensive resource database. Please reach out to our care teams for assistance. We are always Here to Serve!

    By Chris Smith

    August Is Children’s Eye Health and Safety Month

    August Is Children’s Eye Health and Safety Month

    Pediatric Eye Cancer

    Here to Serve is passionate about helping children who are battling cancer. August is National Child Eye Health and Safety Awareness Month and it reminds us to be mindful of the vision of a child. Unfortunately, Children do get eye cancer. Retinoblastoma happens to children under the age of five and is the most common childhood eye cancer diagnosed. It originates in the retina. The retina is a thin layer of nerve tissue that coats the back of the eye (unilateral), but in some children, both eyes may be involved (bilateral).  About 300 children in the U.S. are diagnosed with retinoblastoma every year.

    Baby getting eyes checked

    Prevention Starts with Early Eye Examinations

    Prevention starts with early eye examinations and vision screenings, which are crucial to the overall vision and health of the eye. “Children are susceptible to a host of vision and eye problems such as injury, infection and increased nearsightedness. Cancer is not the only reason to give eye care a high priority with children. In support of Children’s Eye Health and Safety Month in August, the American Academy of Ophthalmology provides information to the public that can help protect and preserve a child’s eye health for life.”

    Did you know? Newborns cannot see at birth. Vision develops slowly over time. If an infant cannot see because of a congenital cataract or other eye problem, their brain development will suffer. Early visual experience is essential to brain development.

    According to Kenneth Wright, M.D., a renowned pediatric ophthalmologist in Beverly Hills CA, “The critical period for early visual experience is the first 8 weeks of life.”

    For more about Dr. Wright and to view his educational videos, click here or here more related videos.

    The Role of the Pediatrician in Eye Care

    Baby girl getting eyes checkedYour pediatrician has the primary role, as your child’s physician, to provide basic eye screenings during routine visits. However, these screenings often fail to detect eye problems. This is because they lack the right equipment and often staff training to detect subtle findings the ophthalmologist and his staff are trained to detect. It is very common for a child to “trick” the system when having their vision checked by peeking or turning their head. They are just trying to see; they don’t realize they are fooling the test. Astute ophthalmic personnel are trained to catch even the most subtle test miscalculations brought on by a child sneaking a peek.

    Eye Screening for Children

    It may surprise you that the first eye examination should be at birth. If the child is premature, they should be monitored very closely for ROP, (Retina of Prematurity). In the case of prematurity, it is best to have your child seen by a pediatric ophthalmologist early.

    The recommended schedule for eye screenings is: 

    • Birth
    • 6-12 months
    • 12-36 months
    • 3-5 years
    • 5 years


    What is amblyopia? This is sometimes called “lazy eye”, one eye is often misaligned, but not always. If you see that your infant has an eye that tends to wander off, turn in or out, be sure to have a thorough exam by a pediatric ophthalmologist who specializes in treating eye conditions in children. Detecting amblyopia early is critical to preserving vision.

    Often there is no obvious sign, at first, that one eye is not seeing well. If a child has a high refractive error (need for glasses to see) in one eye, the brain will begin to ignore any blurred images in that eye and favor the eye that sees well.

    In effect, the brain turns off the images of the blurred eye. The only way to preserve vision in the affected eye is to encourage the brain to use it. This is accomplished by covering the good seeing eye. The sooner this is started, the greater the chance the vision can be saved. The success rate declines the older the child is when treatment begins.

    What Can a Parent Do to Check Their Child’s Vision?

    Parents can do a quick check on their infants. Hold up an object such as a toy, completely cover one eye at a time. Check to see if their child can fixate and follow the toy. If an infant has a hard time seeing out of one eye, they typically show signs of distress when the good eye is covered. When the poor seeing eye is uncovered, they will feel better and be able to fixate on the object you show them.

    Early on, it may appear your infant’s eyes are crossing, but this can be a normal phenomenon. If you suspect something is not right, have your child examined by a pediatric ophthalmologist.

    Pediatric Eye Cancer

    Retinoblastoma in young boy

    Although rare, pediatric eye cancer can be devastating if not detected early. As previously mentioned retinoblastoma is cancer of the eye. It happens when nerve cells in the retina change, growing in size and number. The cells eventually form a tumor. The cells usually spread in and around the eye. They can also spread to other parts of the body, including the brain and spine.

    Retinoblastoma in young girl

    Retinoblastoma usually affects young children under five, though it can sometimes occur in adults. Children with retinoblastoma may have inherited a gene from their parents that causes this disease. These children tend to get retinoblastoma at an earlier age, and in both eyes.


    Meet Cooper

     “Never underestimate a mother’s intuition. Lisa Morris’s son, Cooper, was just 6 months old when she noticed his left eye looked unusual in photographs. There was a glint that gave him a slightly cat-eyed appearance. A week later, at his well-baby appointment she asked her family physician to take a closer look. He didn’t see anything concerning. Maybe it was nothing, but her intuition told her to remain on guard.

    “Two months later, she knew what she saw in his photographs was real. The glint now appeared as a white spot. Again, the well-baby exam turned up nothing. This time, she made an appointment with a cancer specialist, who quickly confirmed her worst fears. Cooper had a tumor, called a retinoblastoma, growing at the back of his eye. She was told to go home and pack a bag. He was to be treated with chemotherapy immediately. Again, mother’s intuition told her to put on the brakes. She wanted 24 hours to consider treatment options. Ultimately, Lisa decided to take Cooper to an ophthalmologist who would offer a better treatment; one that saved Cooper’s life and his vision.” Learn more about Cooper and his story here.

    What Your Eyes Do in Photos Can Be TelltaleExample of leukocoria

    A red reflex is produced when the flash of a camera lights up the blood-rich retina.  If the eyes are looking directly at the camera lens and the color of the reflex is both eyes are red, in most cases that is a good indication that the retinas of both eyes are unobstructed and healthy.

    Leukocoria means ‘white pupil’ or ‘cat’s eye pupil. ‘ Leukocoria is an ab-normal pupillary reflex seen in children with retinoblastoma. When a camera flash turns eyes white, yellow or black in photos, this can be a warning sign for an eye abnormality or eye condition that needs to be seen by a pediatric ophthalmologist. Before you react, be sure the child was looking directly at the camera gens, the camera flash was on and the background was dimly lit, and the red-eye reduction is turned off. Testing eyes with camera flashOften, a white reflex may not actually signal anything abnormal. Instead, the child is probably looking to the right of the camera, and the white reflection occurs in the left eye.

    What About Screen Time? 

     There are many eye conditions that contribute the loss of early visual experience some of which can be life threatening if not caught early. School age children are using their screens more during the Covid-19 Pandemic. With that in mind, it is important to continue with regular eye health check-ups for your children. Ophthalmologists are some of the first physicians that diagnose very serious conditions during a routine eye exam. Lessor conditions, like nearsightedness, is the most common visual problem detected in
    pre-school and elementary school children.Effect of screen time

    If you notice your child squinting, rubbing their eyes, putting their chin down, or turning or tilting their head when looking at things, these can be signs they are having trouble seeing. If they do not seem interested in the book you are reading them and look away or fuss, this may indicate they cannot see well up close. 

    The sooner you have your child evaluated by an ophthalmologist, the greater the likelihood the child will achieve proper brain development, developmental milestones, and thrive in the educational environment. In fact, it may save their life!

    Get Help If Your Child Has Cancer

    We hope this information will help save the precious sight and life of children. If you know a child who has recently been diagnosed with cancer, ask them to contact us. Here to Serve provides support, guidance and assistance for families and their children as they work though the challenge of cancer. If you wish to donate your time or resources, please contact us at Here to Serve.

    About The Author

    Amanda Enciso is a cancer survivor from the Los Angeles area. She volunteers knowing what families endure during the cancer journey and after, as she battles GVHD resulting from her transplant.  While going to school full-time to get a degree in English to start a new career path in life, Amanda finds time to write blogs for Here to Serve.

     All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.

    PTSD and the Loss of a Child

    PTSD and the Loss of a Child

    Signs, Symptoms, and Help

    • baby holding fingerThere is no greater fear for a parent than the thought of losing their child to cancer. Losing a child is one of the most heart-wrenching experiences a person can go through and can seem unrecoverable physically and emotionally.

    Life with our child shapes who we are as people. When this precious child’s life is gone, parents lose part of themselves. Once-happy memories invade daily thoughts and can incapacitate a parent for months and sometimes years. Parents are supposed to outlive their child, not bury them before they have lived a full life.

    The psychological effects of losing a child can lead to a wide range of mental health issues, including:

    • Depression
    • Anxiety
    • Cognitive and physical symptoms linked to stress
    • Marital issues
    • Increased risk of suicide, pain, and guilt

    How Many Parents Lose a Child Each Year?

    The The New York Times reported in 2017 that 7% percent (or 23.3 million people) are parents grieving the loss of a child.

    child memorialTrauma

    As parents search to make sense of their loss, they cry more, eat more or less, cannot sleep, long for their child, and wonder how they will live without them. Then, finally, trauma occurs.

    What is Trauma?

    Trauma is an emotional response to a shocking, distressing event. Losing a child is one of the most traumatic events a parent can experience.

    Trauma Symptoms

    There are several symptoms of trauma for loved ones grieving the loss of a child including: 

    • Nausea
    • Dizziness
    • Sadness
    • Anger
    • Denial
    • Fear
    • Shame
    • Nightmares
    • Insomnia or altered sleep patterns
    • Difficulty maintaining and starting new relationships
    • Emotional and/or angry outbursts
    • Gastrointestinal problems


    The loss of a child is not something that seems possible, and it is no surprise a child’s death triggers Post Traumatic Stress Disorder (PTSD).

    What is PTSD?

    According to the American Psychiatric Association, Post-Traumatic Stress Disorder is a psychiatric disorder that can develop after having witnessed or experienced a traumatic event.

    PTSD symptoms

    How many people suffer from PTSD?

    PTSD affects about 3.5% of adults in the United States. It is estimated 7 to 8% of the population will experience PTSD at some point in their lives, with women being twice as likely as men. Grief from the loss of a child is so intense many suffer from PTSD for years after their child’s death. 

    Can losing a child cause PTSD?

    The psychological effects of losing a child can lead to a wide range of psychological and physiological problems, including PTSD and associated mental health disorders.

    PTSD after the death of a child causes weeks, months, and sometimes years of pain. Losing a child can make life feel like time stands still. Parents are supposed to outlive their child, not bury them before they have lived a full life.

    PTSD Symptoms

    Someone with PTSD may experience a range of different symptoms. PTSD does not require a person to experience all these symptoms. They include:

    • Lack of interest in activities the person once enjoyed
    • Negative thinking or mood about oneself, other people, or the world
    • Easily startled or frightened
    • Lasting feelings of anxiety
    • Avoiding places, activities, or people that remind the person of their child
    • Flashbacks or nightmares
    • Recurrent, distressing memories of the suffering and ultimately death of the child
    • Aggressive and/or reckless behavior
    • Severe emotional distress or physical reactions to something reminding you of your child
    • Feelings of hopelessness, detachment, sadness, anger, guilt, shame, or irritability
    • Difficulty concentrating and memory problems
    • Difficulty maintaining or creating close relationships
    Dad kissing child on foreheadGetting Help for PTSD

    Most people recover from the trauma of a child’s death after a period of adjustment. However, if symptoms persist for more than three months, getting help from a therapist will help you adjust to what happened and get back to living life. Mental health professionals who can help include:

    • Psychologists
    • Psychiatrists
    • Licensed clinical social workers
    • Licensed professional counselors
    • Licensed trauma professional
    • Bereavement specialists

    Cognitive-behavioral therapy has proven effective for people with PTSD. This type of therapy teaches ways to replace negative, unhelpful thoughts and feelings with more positive thinking. Behavioral strategies can be used at the patient’s own pace to help desensitize the traumatic parts of what happened.

    Complicated Grief Disorder (CGD)

    For most, grief passes with time. Unfortunately for others, the feelings and emotions after suffering the loss of their child do not improve after significant time has passed.

    ART International (Accelerated Resolution Therapy) calls this persistent bereavement Complicated Grief Disorder (CGD). A sub-sect of PTSD, also known as Complex Bereavement Disorder, is a common manifestation in the process of intense grief. The emotions attached to such gut-wrenching loss can be tough to navigate and recover from, to the point that the one suffering can find it hard to move on with their lives or even how to live.

    CGD Symptoms

    The symptoms of CGD include:Mother struggling to rest

    • Inability to focus
    • Extreme avoidance of reminders
    • Numbness or detachment
    • Feelings of bitterness or that life has no purpose
    • Lack of trust in others
    • Feelings of guilt or self-blame
    • Either extreme focus or avoidance of reminders of a loved one
    • Unable to focus on anything other than the loss
    • Inability to accept the death
    • Feelings of bitterness or that life holds no purpose

    How can we help? 

    Here To Serve believes that caregiving continues, even if the absolute worst happens and a child passes away. Checking in with loved ones battling cancer and encouraging the community to do the same makes this unique devastation less isolating.

    People may feel like they are on an island, but they don’t have to, nor do they want to be a majority of the time. Therapy can help and should be encouraged and recommended. Still, the method that even therapists would agree with is interacting with your community and friends and having people walk the journey of losing a child and navigating PTSD together.

    About the Author

    Bryan Quintas is the son of the founder of Here to Serve, who also battled stage IV cancer himself. He knows the gut-wrenching battle to keep living when your body turns against you. He has devoted his life to helping others. He is a graduate of USC, and is now getting his MS in Marriage and Family Therapy at Fuller Seminary.

     All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.

    Can Cancer Kids Go Back To School With COVID-19’s Delta Variant?

    Can Cancer Kids Go Back To School With COVID- 19’s Delta Variant?

    Weighing the Pros and Cons

    Teacher's deskWhile most schools across the country are planning to return to the classroom this Fall, another segment of children has other reasons to be apprehensive about returning to school; they are kids who survived cancer or who are currently fighting the disease. While most children across the country are holding onto the last days and weeks of their summer vacation during August, many children battling cancer instead continue to suffer extended hospital stays and challenging cancer treatments. Spending the remaining days before school in the warm sun sharing laughs with friends and family is not the experience most cancer kids enjoy. All children deserve to anticipate the upcoming school year with nervous excitement about seeing friends and meeting their new teachers. Unfortunately, for some cancer children, returning to school is not an option.

    Covid’s Delta Variant

    The continued uncertainty of COVID-19 and the delta variant may be weighing in the thoughts of parents who enjoyed the benefits of online learning for the past two years while their child battled cancer. Entering the third school year since the start of the pandemic, kids and parents hope that everything is behind them, but the delta variant and lagging vaccine rates show that the virus has not entirely gone away. Covid’s delta variant is a significant concern for most parents and a shut door to children recovering or currently in treatment for cancer. While some children returned to campus last year, many have not attended in-person learning for well over a year, so, understandably, children and their parents are anxious for the new school year. Parents of cancer kids are even more worried about returning to a classroom setting.

    Zoom classroomTo Zoom or Not to Zoom

    When the pandemic hit the United States and schools shut down, teachers, students, and parents quickly adapted to virtual learning. This shift benefited cancer kids who are often denied physical contact with the public because of their compromised immune systems during treatment and directly after. In addition, pediatric oncologists prevent many children under treatment from attending school for fear their compromised immune system is too vulnerable to viruses and disease. These children benefited from the improvements over time in distance learning, which became more organized. This allowed children to receive more structured and effective online learning.

    Since children battling cancer learn from home or from a hospital bed, they benefited from more flexibility with their daily schedules. If fatigue set in during the day or if they had doctor appointments, pediatric cancer patients could more easily take time off and not worry about being pulled out of class or taking extended time off school. They were in the same academic situation as their classmates, and it allowed them to interact with their peers socially and not fall behind educationally or socially.

    Benefits of In-Person Learning

    There are pros and cons of distance learning that will be open for debate long after the end of the pandemic, but there is little doubt that in-person learning is vital to a child’s development. Children attend school primarily for academics, but they also learn critical social and emotional skills equally crucial to their mental and physical growth as young people. Human interaction was often limited during the height of the epidemic, affecting the mental health of both children and parents. But for children with cancer, there are these and other issues to consider when parents and guardians are making the difficult decision to send their child back into the classroom.

    School kids wearing masksRisk of Cancer Kids Catching COVID-19 at School

    Overall, children have a lower risk for serious illness due to COVID-19. However, it does not mean that there is no risk of kids getting the virus. Research by the American Academy of Pediatrics shows, as of July 15, 2021, over 4 million children have contracted COVID-19, and they represent 14.2% of all cases in the United States. Fortunately, the risk of severe illness in children is typically lower.

    Cancer and specific treatments weaken the immune system so that cancer kids can be at a higher risk for infection. As we have seen over the past 18 months, information changes daily. So whether a child is currently going through treatment or returning to school after surviving cancer, parents must consult with their child’s care team before loading up their backpacks with new school supplies and sending them off to the classroom.

    To School or Not to School in Person

    Consider the following questions:

    • What are your child’s current medical conditions and the status of their immune system?
    • Are they currently going through cancer treatment or taking medication that may prevent them from returning to the classroom?
    • Is your child over 12 years old and able to receive the COVID-19 vaccine?
    • Will your child have regular contact with people who are at risk for contacting COVID-19?
    • What are the health and safety precautions your child’s school is taking to reduce the threat of transmission?
    Where to Find the Latest School Guidelines

    The Centers for Disease Control and Prevention (CDC) is a great resource to find up-to-date information regarding guidelines for K-12 and recommendations for sending your child back to school in person this Fall. If you choose to send your child to school, there are simple precautions that your child can make that will reduce transmission risk:

    • If possible, maintain a least three feet of physical distance between students and teachers when indoors.
    • Wear a mask is around people who are not vaccinated.
    • Practice good hygiene and regularly wash hands.

    Stay home if showing signs of the illness and contact your health provider to determine if getting tested is appropriate.

    Here to Provide Useful Information

    COVID-19 continues to have lingering effects on the world nearly two years since its inception. Each day cancer families not personally touched by the virus face lingering consequences from the global impacts of the pandemic. Add to this the stress, turmoil, and uncertainty of childhood cancer. It all can be overwhelming, but we are dedicated to families during this uncertain time at Here To Serve. We can provide guidance and support during this cancer fight. Our Family Care Coordinators will help conduct a needs assessment and connect you with valuable resources personalized for your requirements. 

    By Chris Smith

    About the Author

    Chris Smith is a Here to Serve volunteer from the San Francisco Bay area who himself is a cancer survivor.  He uses his professional experience as a technical writer to give back and provide clear and meaningful information for families with a child battling cancer.

    All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.

    How Common is Anxiety in Childhood Cancer Survivors?

    How Common is Anxiety in Childhood Cancer Survivors?

    Feelings of Nervousness, Fear, and Tension

    When do you truly survive cancer? When the oncologist tells you the tests show no sign of cancer? When you feel physically better? Or maybe when you can dispose of all the cancer-fighting medication?

    child holding hold 

    When you get the news that you no longer have cancer, the feeling is indescribable. The sense of relief, overwhelming joy, a belief you can take on the world and accomplish anything. But what if those emotions aren’t there? Imagine that you are a young child; how do you express your feelings when you get this news? What if fear and not happiness is the intense reaction racing through their young minds?

    What Are These Feelings?
    Words associated with anxiety

    The American Psychological Association defines anxiety as “an emotion characterized by feelings of tension, worried thoughts, and physical changes like increased blood pressure.”

    Individuals with anxiety can have disturbing thoughts that come on suddenly and often can interfere with daily life. Worry and stress are common during a severe illness. Many children are resilient and able to cope during and after treatment, but these intense feelings can persist for some.

    Anxiety in Young Cancer Survivors
    Various facial expressions

    During the past 50 years, with advances in science and cancer research, the overall survival rate for children (ages 0 to 14 years) and adolescents (ages 15 to 19 years) has increased dramatically. According to a study by the National Cancer Institute, between 2010-2016, 84% of children and 85% of adolescents diagnosed with cancer survived at least five years after the initial cancer diagnosis. That is an estimated half a million survivors of childhood cancer. This is genuinely outstanding news worth celebrating, but what if your child does not share these same feelings of happiness? 

    Treatments such as radiation and chemotherapy can also bring adverse long-term effects beyond physical disabilities. Children who survive cancer can have increased stress and anxiety levels after being free of the physical disease. Follow-up doctor’s visits can be a constant reminder that cancer may return, leading to endless worry. Add to this the COVID-19 pandemic, and children with lingering compromised immune systems who are still going through their formative years can be quietly going through severe emotional trauma.

    During this post-cancer stage, there are also other types of challenges a child will face. Readjustment into family life and also reentering school and different social situations can bring about anxiety. A child may return to school years behind their friends. There may also be long-term attention and memory issues associated with the cancer treatment. A young child may hope to readjust into their former life, but the reality is that may not be an easy transition.

    Signs of Anxiety in Pediatric Cancer SurvivorsSigns related to anxiety

    Organizations specializing in the effects of childhood cancer continue to research to determine the percentage of pediatric cancer survivors who suffer from post-treatment depression and anxiety; it is not an uncommon occurrence. Each child experiences anxiety in different ways. Often it is dependent on the age and maturity level of the child. Young children may find it difficult to express or identify their feelings. Older kids or teenagers may not want to talk about the issues they are facing.

    As a parent, you are your child’s primary caregiver before, during, and after cancer treatment. You know your child better than anybody else, so it’s essential to reach out to a qualified mental health provider if you believe your child is suffering from an anxiety disorder after treatment. St. Jude’s provides excellent information for parents of cancer survivors dealing with anxiety.

    Some of the signs and symptoms may include the following:

    • Feeling worried or scared
    • Irritability
    • Trouble concentrating
    • Problems sleeping
    • Loss of appetite
    How anxiety affects the body
    Options for Treating Anxiety in Young Cancer Survivors

    Just as there are options for treating cancer, there are numerous options for treating anxiety in young cancer survivors. The following are some of the methods that the National Institute of Mental Health suggests.

    • Psychotherapy-Cognitive Behavioral Therapy or talk therapy
    • Mind/Body Therapy-Therapies such as yoga or other physical exercise.
    • Medication-Once diagnosed, a doctor can prescribe medications such as antidepressants or mood stabilizers

    It is important to remember that your child’s care team is still there to help even after cancer treatment. They should be able to provide additional information for assisting your child with any physical or mental concerns.

    Helping Families in a Time of Crisis

    A pediatric cancer diagnosis is devastating news for families. It is a life-changing event that can have lasting effects for years. We are fortunate to live in a time when the majority of children with cancer will survive. Having a solid support system during and after treatment can help to ease the physical and emotional turmoil a child will face. At Here to Serve, our mission is to offer compassionate assistance so that families are together, and their energy can center around the child’s needs during their cancer fight.

    By Chris Smith

    About the Author 

    Chris Smith is a Here to Serve volunteer from the San Francisco Bay area who himself is a cancer survivor.  He uses his professional experience as a technical writer to give back and provide clear and meaningful information for families with a child battling cancer.

    All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.

    Cognitive Impairments: The Unseen Impact of a Child’s Cancer Treatment

    Cognitive Impairments

    The Unseen Impact of a Child's Cancer Treatment

    Pediatric cancer patient holding headWhile there are obvious visible signs of cancer, the unseen effects of cancer are likely the most damaging long-term. Cancer patients can experience side effects for years, and in some cases, the rest of their lives. Cognitive impairments fall into this category. They have a lasting impact on a cancer patient’s life, particularly the life of a child who has their whole life in front of them…now as a cancer survivor.

    Impact of Cancer Treatments

    Chemotherapy is a harsh treatment that ravages the body bringing about cruel side effects. It’s a battle without limits or boundaries. It is the most taxing fight anyone will physically endure: hair loss, weight loss, lack of appetite, intestinal and kidney disorders, nausea, mouth sores, chronic tiredness, septic shock, and the list goes with even more severe side effects. A cancer patient’s physical struggle is horrendously challenging and painfully apparent to those around them. However, a cancer patient’s cognitive deficits from chemo are just as severe, albeit not nearly as noticeable to the outside world.

    Chemo Brain

    A mild form of cognitive deficits is sometimes called “chemo brain.” These typically mild mental changes can disrupt daily living for a child, and long-term can impede their ability to work and have a successful career. It is especially damaging to children who are still in school and trying to give life their best effort leading to a future of independence. Cognitive brain damage is a real and expected outcome from chemo that is rarely spoken about, mainly because the struggle is unseen to the naked eye. The National Institute of Health (NIH) states that up to 75% of cancer patients have cognitive impairment during treatment. At least 35% of cancer survivors have permanent damage that follows them for years after treatments have ended.

    Chemo brain symptoms include:diagram of treatment effects on body

    • Difficulty concentrating and multi-tasking
    • Difficulty remembering things that occurred recently
    • Difficulty completing tasks and following directions
    • Difficulty problem solving
    • Slow thinking and mental processing speed
    • Inability to think clearly
    • Loss of visual-spacial skills
    • Disorganization
    • Fluctuating alertness and orientation

    If these were the only cognitive impairments that result from cancer treatments, maybe the conversation could remain personal to the patient and his/her parent and doctor. But the truth is cognitive impairments from cancer treatments is a much broader conversation that should be addressed with as much attention as the cancer treatment itself. 

    Permanent Cognitive Impairments from Cancer Treatments

    Word cloud related to chemo brain

    According to the Livestrong Cancer Research Organization, cancer survivors can suffer permanent cognitive impairments from chemo-brain. However, other cognitive impairments are often experienced from more aggressive treatments such as radiation, immunotherapy, spinal cord chemo, and high-dose steroids.  These cognitive impairments can include a reduced level of consciousness, unusual sleep patterns, agitation, confusion, memory loss, aggressive behavior, hallucinations, poor judgment and decision-making, disorientation, anxiety, delirium, dementia, depression, and inactive behavior.

    chart showing affected brain regions from treatment

    High-dose steroids, for instance, are often given to cancer patients to circumvent the impact of chemo on the body and help bring down inflammation and manage pain. Steroids can have multiple roles, including being part of the cancer treatment itself. However, high-dose steroid treatments can come at a high cost. They leave lasting physical impairments and also impact the brain, causing severe and volatile mood swings. For parents of a child with cancer, this can leave them wondering where their real child has gone during treatment and sometimes after. Some children might even be aware of their own mental and emotional changes but are powerless to stop them and recover their true selves.

    New Struggles for Childhood Cancer SurvivorsPediatric cancer survivor looking out the window

    A child’s life and future can be upended due to cognitive impairments even after cancer treatments are over when they become “survivors.” These mental struggles can be the most ruthless part of cancer and its aftermath for both patient and parents. Brain chemistry can change for life. Living life “normally,” especially for kids, can be a significant challenge. Academics, driving, organizing, school and/or working are all things that are dramatically affected. Particularly frustrating to a child is to see their peers do these things with ease. In addition, mental struggles can bring about a host of psychological issues, including but not limited to depression that will need medical attention, potentially for years.

    Learning how to drive, for the average teenager, is a six-month or less process. For a cognitively-impaired child coming off chemo, it can take up to a year or more. Some may never learn how to drive. Working a job requires memorization and cognitive skills most cancer survivors can’t necessarily do at the speed most jobs expect. This leaves many cancer survivors either without the ability to work or bouncing from job to job because of being let go.

    Parents Long for a Normal Life for Their Child After Cancer

    A child’s cognitive impairments can be exceedingly challenging on caregiving parents who not only guide their child through cancer but back to what they hope will be a normal life. Often there is nothing normal about the life their child will now live. All any parent wants for his or her child is to live a productive and fulfilling life. Nothing hurts parents more than seeing their child left out, disadvantaged, and unable to create a happy and successful life because cognitive impairments have taken hold of their child’s future.

    Pediatric cancer survivor struggling with his studiesMany medical professionals say that half the cancer battle is mental. The reality is, even if one overcomes cancer, the mental battle is ongoing. Highlighting the struggle and helping those most impacted is a tangible way to advocate for pediatric cancer. Cancer research and hospitals treating cancer are well funded.  But cancer is a three-legged stool: Research, Treatment, and Journey. Focus on the journey cancer patients must take, and the aftermath of that journey is not even in the cancer conversation publically, let alone being funded. And don’t fool yourself into believing that medical insurance will take care of treating these issues. It does not!

    Care and Funding For the Cancer “Journey”

    Most people care about cancer because they have had some level of experience with it through a friend or family member. Thoughts on how to address cancer are often directed to fund hospitals and cancer research. Hospitals and cancer research foundations have done an excellent job! However, little attention and awareness are given to funding organizations that focus on the journey and the cancer patients themselves.  It is not wrong to fund research and hospitals.  What is wrong is that the journey is not given the same visibility, focus, or funding.

    Here to Serve Is About the Journey

    Here to Serve’s entire focus is on the Journey. They mobilize teams of people into care communities to take on everyday responsibilities so parents can spend more time with their sick child and other children. Parents need to tackle tasks that become exponentially more difficult with a sick child, like tutoring, medication scheduling, nutrition, treatments, doctor and clinic visits, helping their child manage emotions, and giving them tools to compensate for lost mental acuity. Here to Serve gives families the ability to manage their cancer journey with their child. If you know of the recent cancer diagnosis of a child or parent of young children, let them know they are not on this journey alone. Have them Get Help through Here to Serve!

    By Bryan Quintas

    Celebrating Dads with Cancer Kids

    Celebrating Dads with Cancer Kids

    Father’s Day 2021

    Fathers Day 2021When you become a father, nobody hands you a playbook with all the answers, least of which when your child is diagnosed with cancer. You can read all the parenting books in the world, and it will not truly prepare you for the role of fatherhood or a critically ill child. The first moment you see your child, it becomes a mixture of fear and excitement. You want the best for your child; you want to be the best dad for your child. There will be plenty of moments where you will get everything wrong, but each day most dads will try their best to do the right thing when being a parent.

    I Heart Dad spelled with blocksOn Sunday, June 20th, we celebrate Father’s Day in the United States. A day that was first recognized as a federal holiday by President Nixon in 1972. In these nearly 50 years, celebrating has come in the form of handmade gifts and store-bought neckties. Backyard BBQs with family, or an afternoon at a big-league baseball game, soaking in the warm weather. However you honor your father this year, please take a moment to give recognition to a special kind of father, those men who are cancer dads.

    Hand HoldingMen Stepping Up in a Time of Need

    According to the American Childhood Cancer Organization, each year in the United States, there are an estimated 15,780 children between the ages of birth and 19 years diagnosed with cancer. So each year, thousands of men, who are fathers or father figures to a young child, receive devasting news that is any parent’s worst fear; their child has cancer.

    There is no doubt that a mother plays an important and critical role in raising and nurturing her child. When that child has cancer, a mother’s protective instincts will become even more evident. But a father’s care is just as essential, and cancer dads need to be honored for all they do.

    Dad and DaughterAs our society has evolved, the current role of the father has transformed. Fathers now have a more significant impact on their children’s development. Mothers and fathers are partners, each taking on different or shifting responsibilities. Fathers can be caring and loving, and when faced with helping their child through cancer treatment, these men are heroic.

    In many cases of childhood cancer, some dads must assume the hidden responsibilities of the cancer fight, not always by choice but by necessity. Parents become caregivers after the diagnosis. Endless doctor visits and chemo treatments, prolonged hospital stays are often overseen by cancer moms. Over time a child’s medical costs will skyrocket. And if one parent must take an extended leave to be with their child, the other parent, generally the father, must take on the burden of working to help pay for these costs.

    Dad and DaughterWhether a dad works in an office or drives a truck across the country, their child is heading into treatment, and they want desperately to be there physically, but it’s not always possible. It is frustrating to stand back and focus on work while their child undergoes the pain and suffering of treatment. And after a long day on the job, cancer dads come back to their child to offer the gift of love. That can come in the form of a hug, reading a story, administering medication, offering words of encouragement as their son or daughter suffer through chemo side effects. The horror of childhood cancer will bring out the best in a father who is doing everything he can to help his child.

    Here to Lessen a Father’s Load

    Dad tossing child in airFeelings of helplessness can sweep over a father in times of darkness. Yet, he is trying to be stoic and strong in moments of uncertainty. It is not easy for many men to ask for help. They want to be the provider, but they are only human, and just like the care team working around the clock to save the child, there are others in the community ready to serve. At Here to Serve, our team of family coordinators can help cancer dads lighten their workload at home, so they have additional time with their child. Helping to ease the burden of parents is the way we honor fathers every day of the year.

    By Chris Smith

    Women’s Health Suffer While Caring for Others

    Women's Health Suffer While Caring for Others

    The Importance of Their Health

    Graphic reminding the importance of women healthEven though May is National Women’s Healthcare Month, the subject deserves ongoing attention for moms caring for a child battling cancer; it needs highlighting all year long. June is another excellent opportunity to encourage all moms caring for their child battling cancer to make their health a top priority.

    Children take a lot of time and care, as do spouses. Being a mother is a sacrificial, thankless role. Today’s moms often work, as well as take care of the home and children. Even in normal circumstances, this is a big responsibility. Mothers are superheroes, and it’s in their nature to prioritize children and spouses over themselves. Unfortunately, health is a significant factor that most women ignore, especially when life gets complicated.

    Cancer and CaregivingMosaic of a women's face with health factors

    Being a caregiver and taking a child through cancer exponentially multiplies a mother’s everyday tasks and responsibilities. Children who deal with that much pain and physical incapacitation can’t do many things for themselves. That puts a lot of pressure on a caregiving mother to fill the gaps. Inevitably, that leaves less time in the day for their own health or activities and responsibilities that don’t involve their sick child.

    For any person, part of a healthy lifestyle involves self-care: exercising, healthy eating, doctor checks, etc.. Those are things that caregiving mothers simply leave unattended because they don’t have time. As such, many women come out the other side of their child’s or spouse’s battle with cancer in a compromised physical state themselves. Poor health can manifest in many ways: weight gain, high cholesterol, high blood pressure, diabetes, heart disease, depression, and many other conditions.

    Women’s Health Conditions
    Chart showing common women health concerns

    Women’s health conditions can be effectively treated with early detection through regular medical checkups. You can’t effectively treat these conditions if you aren’t going to the necessary checkups to detect them. What comes to mind when you think about women’s health concerns? Breast cancer probably tops the list. But staying healthy as a woman involves more than breast exams and mammograms. Just as your life has many facets, so does your health. Luckily, many of women’s top health concerns are preventable conditions. Keep these key conditions on your radar and find out what can be done to prevent them.

    1. Heart Disease: Your mom may have told you to guard your heart. She was wise, but maybe not in the way you think. More than one in three American women have some form of cardiovascular or heart disease.
    2. Cancer: Once again, breast cancer tops the list when you think about women and cancer. And breast cancer is definitely a top health concern for women. But did you know skin cancer is the most common cancer in the United States? What’s more: Lung, colon, and uterine cancers combined account for almost as many cancers as breast cancer.
    3. Depression: We all get the blues from time to time. But depression is more than that. Depression lasts for more than a couple of weeks and interferes with your daily life. And it’s almost twice as likely to affect women compared to men.
    4. Autoimmune Diseases: Autoimmune diseases occur when your immune system goes haywire and attacks healthy tissues. There are a wide variety of these diseases that affect nearly every organ system. And 75% of the time, they affect women. In fact, approximately 30 million women in America suffer from an autoimmune disease.
    5. Diabetes and Obesity: Type 2 diabetes is an epidemic in the United States, affecting nearly 26 million adults. And almost half of these cases are women.
    6. Sexual and Bladder Health: Sexual health can go hand-in-hand with bladder health. Infections are a concern, both sexually transmitted diseases and urinary tract infections. But so are functional problems, such as urinary incontinence and sexual difficulties. Bladder problems are known to worsen sexual problems if you are self-conscious or embarrassed.
    7. Stroke: Every 40 seconds, someone in the United States suffers a stroke. And every four minutes, a person dies as a result. You should know 60% of these deaths occur in women.
    Relief is in Sight for Mothers of Cancer KidsWomen mosaic composed of health-related words

    Here To Serve mobilizes people within online care communities to help alleviate daily responsibilities at home for caregiving mothers. This helps mothers and wives give their own health much-needed attention. Encouraging caregivers to take time and care for themselves is a fruitless endeavor unless responsibilities that fall on women are alleviated. Care communities take over responsibilities that inundate most caregiving mothers to the point of neglecting themselves. Relieving stress and is the best promotion for women’s healthcare.

    Not having to make meals, take healthy kids to school or sports practice, do laundry, etc., leaves time for a caregiver to go to their own health checkups and exercise. Knowing that they have a community supporting them in helpful and practical ways, also gives a caregiving mother the motivation and encouragement to take care of herself.

    We live in a society with many social media warriors. Many people say they are a champion for this and a supporter of that. It is time for people to walk their talk in ways to provide solutions for these causes. Here To Serve’s mission is to provide practical support and mobilize people whose actions speak more about their advocacy than their words do. Their encouragement to the world is to champion women’s health for a mother caring for her child or husband with cancer.

    By Bryan Quintas

    National Cancer Survivors Day, June 6th

    National Cancer Survivors Day

    June 6th

    A tree with leaves of handprintsRoughly 16.9 million cancer survivors are living in the United States. People of all ages and from all walks of life sharing a common bond. They fought cancer and won. For over 30 years, the first Sunday in June is known as National Cancer Survivors Day®. The event is a tribute to cancer survivors and supports individuals who have been recently diagnosed with cancer.

    Millions of Survivors with Unique Journeys

    According to the National Cancer Institute, over 100 different types of cancers affect millions of people across North America. Each person has their unique journey and their own survivor story. At Here to Serve, we have two volunteer blog writers Amanda Enciso and Chris Smith, who have been affected personally by cancer. In this week’s blog post, we learn about their cancer journeys and the road to survival.

    National cancer survivors day

    Amanda’s Journey

    I was diagnosed with non-Hodgkin’s lymphoma about 16 years ago. The initial shock and desire to deny such a thing could be possible dominated the early stages. As I sought advice from alternative medicine and physicians in traditional medicine, I walked a balance between the two for many years. I had chemotherapeutic treatments off and on over about ten years. I continued working and did not reveal my condition for fear of being discriminated against for employment. The truth is, I was able to perform my job very well throughout 90% of the treatments.

    As a single mom, I could not allow this challenge to take over my life. So I navigated through the various obstacles it presented along the way educating myself, questioning everything, and developing relationships with my physicians as my co-patriots instead of all-knowing gods. The cancer transformed into an aggressive Diffuse Large B-Cell Lymphoma. The stem cell transplant would be the final hurdle up the mountain with my heavy pack. As a backpacker, I anticipated trudging up the steep mountain pass. What I did not expect was falling into a bottomless abyss before the climb. Complications placed me in a coma for a week to manage kidney and lung failure. When I woke up with tubes everywhere and an enormously barbaric catheter violently jutting from my inner thigh, I was angry. I wanted to rip it all off. If not for my beloved daughter to whom I gave birth at age 14, coming to my side, clasping my hand, looking into my eyes, I may have just left. I also had a younger daughter struggling in high school I had to help.

    Six years later, thanks to a gracious young man in Germany donating some of his white stem cells, I am here today, seeing all of my children thriving. Determination has meant I will fulfill a lifelong goal and graduate with a degree I have been working on since I was eighteen in Behavioral and Social Science from Santa Monica College in June 2021. I will continue on to CSULB for my Bachelor’s in Psychology.

    I still have issues from the transplant, like chronic Graft Versus Host Disease (GVHD). I see it as nothing more than another hurdle to overcome. I do not think of myself as a survivor, although many do. I think of myself as a navigator of challenges. I have overcome multiple challenges beginning very early in life. What drives me? I am not sure. I am inherently optimistic by nature. I am inspired, and one might say, compelled to help relieve the suffering of others by example through the demonstration of strength. I never asked myself, why me? I turn to God’s Strength, knowing it is present always and forever. I accept the challenges provided to further my growth, and I get that there will be a time I will no longer inhabit a physical body. The future and the past only exist within the confines of mental consciousness. We must live in the space of the here and now. A plethora of positive, creative, fertile seeds fill my conscious mind; thus, superseding those of doubt and fear. My biopsychology professor pointed out that positive thinking is genetic. Some “win the lottery” for that random biological, genetic expression. Perhaps this inherent aspect of my genetic make-up is what drives me to be here despite adversity.

    Chris’s JourneyRibbons saying survivor

    In late 2017 my wife Kelly began to notice my loud snoring had become increasingly more frequent. Not wanting to have my wife continue to lose sleep, I went to an ear, nose, and throat (ENT) specialist to see if they could find the cause of my snoring. The doctor discovered swelling in only my left tonsil. In his words, that was not normal. Soon afterward, I had a biopsy, and a few days later, an MRI confirmed I had stage 2 squamous cell carcinoma of the tonsil, or more simply, I had tonsil cancer.

    My ENT doctor got the ball rolling and put me in touch with a care team at Stanford University. Living in the San Francisco Bay Area, I was fortunate to have the medical center close to me. Unfortunately, surgery was not an option because the growth was too close to my carotid artery; chemo and radiation were my only options. The silver lining was that I had a care team in place for me, and everyone was proactive in helping me beat cancer.

    My treatment started at the end of February 2018. Over six weeks, I would go through 33 rounds of radiation and three sessions of chemo. I had no clue what I was in store for and the trauma my body would endure: constant nausea, vomiting, weight loss, thrush, and mouth sores. The new normal was continuous fatigue and lack of appetite. The medication cocktail of Gabapentin, Fentanyl, Ativan, and so many others I no longer remember clouded my mind and made me constantly tired. I was no longer able to eat solid food. Due to mouth pain, I could only tolerate Ensure liquid nutritional supplements for nourishment. Over the next few months, I lost over 35 pounds. I did everything in my power not to use a feeding tube. I did not want to go through another procedure.

    I assumed that once my radiation and chemo treatment ended, I would start to feel better, but I had not even hit my lowest point yet. For a few months after treatment, I was so severely dehydrated that I required daily infusion sessions to help build up my white blood cell count. My care team constantly reminded me that everything would take time, and I would soon emerge from this trauma. My body was still fighting cancer and also the toxins that the cure produced. Finally, by the summertime of 2018, I started to emerge from this haze of treatment. It slowly came in the form of decreased nausea, beginning to drink more liquids on my own, removing the PICC line, and finally eating “real” food. I truly enjoyed food again and savored every bite. And the best news occurred on July 24th, when my oncologist told me that there was no sign of cancer!

    Having cancer did change me. I still have residual mouth and swallowing issues, but more importantly, it made me strive to be a better person, give back to my community, and appreciate the people who helped care for me. Family and friends, especially my wife Kelly, were there for me. My support group stepped up to help drive me to treatments, send care packages, or just sent texts or phone calls with encouragement. Those acts helped me make it through this ordeal. And what can I say about my medical care team, “thank you” will never be enough. From the friendly faces that greeted me by name when I entered the doctor’s office to the dedicated medical techs, nurses, and doctors, all are true angels that I will never forget. At my lowest physical and mental state, I saw the best of humanity, the selfless caregivers who constantly helped me get through this unbelievable journey.

    Young Survivors and Their FutureColorful tree saying to celebrate life

    According to the National Cancer Survivors Day Foundation, “A survivor is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.” Nearly 500,000 cancer survivors are people under the age of 20. Eighty percent of children diagnosed with cancer will survive at least five years after diagnosis. We hope they remain cancer-free. Still, we must be aware of “late effects,” a term used to describe medical, emotional, and cognitive problems many childhood cancer survivors face. We celebrate those children and young parents given a second chance. But cancer survivors need to keep up with regular follow-up care and maintain good health habits as they enter adulthood.

    Here to Serve Young Cancer Patients Through to Survival

    At Here to Serve, we focus on children and young parents with school-aged children in the home diagnosed with cancer who are bravely going through treatment. Many of our children and young parents will survive their cancer diagnosis. We are on their journey with them to ease the burden of daily life as they concentrate their energy on the fight. We understand that not every cancer battle will end in survival, but our hope is for survivorship so that young people can live and grow and celebrate. If you know a family with a child or young parent of school-aged children battling cancer, please have them Get Help from our  Family Care Coordinators to provide information and assistance during their cancer fight.

    By Chris Smith and Amanda Enciso

    About the Authors

    Chris Smith is a Here to Serve volunteer from the San Francisco Bay area who himself is a cancer survivor.  He uses his professional experience as a technical writer to give back and provide clear and meaningful information for families with a child battling cancer.

    Amanda Enciso is a cancer survivor from the Los Angeles area. She volunteers knowing what families endure during the cancer journey and after, as she battles GVHD resulting from her transplant.  While going to school full-time to get a degree in English to start a new career path in life, Amanda finds time to write blogs for Here to Serve.

    All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.

    May, Mental Health Awareness Month, Is for Cancer Caregivers

    May, Mental Health Awareness Month, Is for Cancer Caregivers

    May 2020-2021

    Graphic of Mental Health Awareness

    During May, Mental Health Awareness Month, Here To Serve joins the countrywide movement to bring awareness to mental health. For over 60 years, beginning in 1949, Mental Health Awareness Month promotes awareness and instills the importance of mental health wellness. This to support a continuing fight to provide resources and tools to those fighting mental illness. The American Counseling Association states that 1 in 5 people suffer, or will suffer, from some form of mental illness or emotional trauma. We at Here To Serve want to provide our own nuanced perspective on how fighting cancer impacts physical health and affects the person’s emotional health, and more specifically, that of caregivers.

    Your mind matters graphicThe Toll on Mothers as Caregivers

    Often, the caregiving burden of caring for a family and a child suffering from cancer falls squarely on a mother’s shoulders. Mothers, particularly modern-day mothers who work and handle homecare, are superheroes. They think they can do everything, and to their credit, many times they do, but at what cost? It is enough of a sacrifice to be a mother in normal circumstances. Still, it is something else entirely, of which there is no template for, to undertake caregiving for a family with a sick child. It is a feat of which belongs to the likes of the heroes of the Bible.

    Without question, going through a battle for life in a fight with cancer is physically and emotionally painful and draining. However, imagine being a loved one – a husband, wife, mother, or father – watching a spouse or child fight for their life and be in excruciating pain. It is a debilitating feeling knowing you can’t do anything for your loved one’s pain. All you can do is watch, hope, and pray that the pain goes away; that might even include praying and hoping that the pain is taken away by the person passing on. That is the position many caregivers find themselves in. It is an unfathomable state of mind to hope for death as a solution. The toll on their mental health is profound.

    Mental health awareness graphic
    It Takes a Village to Bring Someone Through Cancer

    To say that it takes mental gymnastics to journey through the path of caring for a child in a critical or terminal condition is an egregious understatement. As much as they, particularly mothers, may try and think they can do and be everything for their child, one person cannot possibly do this alone. As a wise proverb has stated, “it takes a village.” Does having a support system remove the trauma and the pain a caregiver and their loved one are going through? Frankly, it is impossible to do so. However, a caregiver who knows that they have people around to support them, not only takes the pressure off the overwhelming responsibilities that caregiving can present, but can also relieve them in ways that their mind and emotions desperately crave.

    Yes, taking over responsibilities for a caregiver so they can be with their loved one certainly helps.  Sitting with them in their struggle – i.e., watching a movie, talking, playing games, telling jokes, sharing a meal – does an uncanny amount of good for a caregiver’s mental wellbeing and can also translate to their physical wellbeing. Often, a person’s mental and emotional strain from being overwhelmed with too many responsibilities can lead to negligence of their physical health: not exercising, not eating right, not sleeping, etc. If a person is happier and more content, they are inclined to treat themselves better because they feel better about themselves.

    Seeking Professional CounselingSymptoms of poor mental health

    It can certainly be a solution to tell a caregiver that they need to see a counselor or someone to talk about what they are going through. For some, it is the right and only solution because a counselor can speak into a situation more honestly than friends and can avoid the backlash that can happen between friends. It takes time to develop that type of depth of relationship with a counselor.

    Sometimes people are innately more willing to open up to those who know them better or people who have been through the same journey than someone who is still getting to know them. In many cases, a friend knows a person better than a counselor or a trained professional does. What can happen is folks are either not ready or don’t have the resources to pay for what many consider non-critical professional mental health care. Others simply do not have the time, so they suffer in silence, which leads to depression.

    Here to Serve Cares for the CaregiverChild with cancer touching noises with a kitten

    The reality is, Here To Serve can fill in gaps for caregivers. A Care Community will advocate for a caregiver’s mental and emotional wellbeing without the price of a licensed counselor. In recognition of Mental Health Awareness Month, Here To Serve’s mission is to reduce stress and strain and improve cancer caregivers’ mental health and wellness. Here to Serve provides tangible support with meals, housecleaning, financial aid, logistics, child and pet care, and so much more. No sophisticated degree of higher education is necessary to be an empathetic support to someone who desperately needs it.

    By Bryan Quintas