Anxiety, an Epidemic of Cancer Survivorship

Acknowledging Anxiety and Seeking Help

10/15/2023

When discussing childhood cancer survivors, we often talk about cancer patients being free of the disease. However, while surviving cancer is a milestone to be celebrated, it is rarely ever the end of the journey.

Managing anxiety after cancer is a crucial aspect that cannot be overlooked. Cancer is a disease that keeps on giving, and the journey of survivorship encompasses various challenges. Cancer is a disease that keeps on giving. Unlike many other topics I’ve written on, I speak not just as the author of this article but as a person on that survivorship journey. As with so many others who share the survivorship journey, I am burdened by anxiety triggered by memories of having cancer, even in the most normal life events and occurrences.

At age 16, I was diagnosed with Stage IV cancer in my bone marrow, a rare form of lymphoma. The cancer tumors in my bone marrow did not have a treatment protocol then. Therefore, they threw every form of chemo to cure me. The journey was rough, and the side effects were ever-changing, debilitating, and always different. Reflecting back to this time, I would not wish it on my worst enemy. It is no wonder that cancer survivors battle with managing anxiety after cancer.

ANXIETY: A NATIONAL REALITY

Let’s first engage with the reality of what anxiety is with some general statistics:

In the past year alone, an estimated 19.1% of the adult population had an anxiety disorder.
Nearly 31.9% of adolescents suffer from an anxiety disorder.
Adding the two totals up, half the population struggles with an anxiety disorder (NIMH, 2023).

Make no mistake; managing anxiety after cancer is a large-scale epidemic in this country that we don’t talk about nearly enough when we discuss illnesses that plague the masses.

SURVIVORSHIP ANXIETY

Although no specific research with a large cancer survivor population has been done, one would think that childhood cancer survivors make up a significant portion of the anxiety-burdened population.

Being diagnosed and treated for cancer is highly stressful and physically and emotionally devastating. With increased research and development in cancer treatment, survivorship numbers are on the rise. While that is certainly cause for celebration, many cancer patients live with the lingering impact of the physical and emotional trauma treatment has caused them.

The National Institute of Health, in conjunction with the National Institute of Mental Health and the National Cancer Institute, speak of what clinicians have dubbed “scanxiety,” or anxiety related to the anticipation of the scan results and the concern of the disease getting worse or recurring. The last thing a cancer survivor wants to do is return to the worst period of their lives and re-live the horror.

As one cancer survivor put it in a 2011 Time magazine article: “Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.” (NCI, 2020)

MY PERSONAL JOURNEY

This cycle of anxious thoughts is an all-too-common occurrence that so many of us survivors go through. In my personal medical file, there exists documentation that tells whatever doctor is checking on me not to be alarmed by my high blood pressure or elevated heart rate because of my anxiety associated with medical facilities. This impacted me to the point that during my master’s program in Marriage and Family Therapy, I was one of the few who choose not to pursue an emphasis in “Medical Family Therapy,” which would have provided me certification to practice in hospitals and medical facilities because of my still existing anxiety.

In the clinical mental health world, there exists something called countertransference. Countertransference is when a clinician hears or experiences something that their client shares with them, and the clinician allows their own feelings to impact the way they interact with their client. I know all too well what a cancer patient is going through. I do not want them to deal with the fear and anxiety I feel being in their environment with them.

As a clinician, my job is to make them feel at ease, but countertransference would likely make them feel more stressed and anxious. Ultimately, my own therapist supported the decision not to pursue certification to practice in hospitals and medical facilities as I completed my Master’s Degree in Marriage and Family Therapy.

HERE TO SERVE’S ROLE

So, yes, I can confirm, from both a research and experiential standpoint, anxiety in childhood cancer survivors is indeed a prevalent and ongoing facet of the journey. At Here to Serve, we help families and patients through the whole journey. If you are now on the survivorship portion of your cancer journey and suffer from anxiety, consider therapy to help you with techniques and strategies from Cognitive Behavioral Therapy. You can also consider journaling and listening to music. These are just examples. There are other techniques that can help with anxiety and have helped me. You can find out what works best for you. The recommendation here is not to go it alone. Get help. Here to Serve has excellent resources and the experience to guide you to the correct resources for your specific needs.

By Bryan Quintas, M.S., M.F.T.

Bryan Quintas is a Stage IV childhood cancer survivor. After battling cancer at 16, he has endured life-long effects from his treatments. Even so, he graduated from USC’s Annenberg School with a Bachelor’s Degree in Communications. He also holds a Master’s Degree from Fuller Seminary in Clinical Psychology, specifically in Marriage and Family Therapy. He has dedicated his life and career to helping others through life’s challenges.

SOURCES

Managing anxiety and distress in cancer survivors. National Cancer Institute. (n.d.). https://www.cancer.gov/news-events/cancer-currents-blog/2020/cancer-survivors-managing-anxiety-distress
U.S. Department of Health and Human Services. (n.d.). Any anxiety disorder. National Institute of Mental Health. https://www.nimh.nih.gov/health/statistics/any-anxiety-disorder
Yi, J. C., & Syrjala, K. L. (2017, November). Anxiety and depression in cancer survivors. The Medical clinics of North America. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5915316/

Scanxiety: A Debilitating Fear

Scanxiety

A Debilitating Fear

10/08/2023

Photo by Tima Miroshnichenko (Pexels)

“Scanxiety;” is a term that many of us on the cancer journey or in the survivorship stage have felt. Even before the name became more commonly used, cancer patients, by the anxiety felt, coined the phrase. However, it is a term that has now only started to be used regularly within the cancer and mental health communities. Might we even say it could one day be a diagnosable anxiety disorder? Perhaps, but that’s not why I am actually writing this. I’m writing this to bring awareness to what “scanxiety” actually is.

DEFINITION

The National Library of Medicine explains “scanxiety” as “the distress that occurs before, during, and after cancer-related scans.” (Derry-Vick, et al., 2023) This can be an excruciating experience that can cause an almost haunting state of mind for a cancer patient and/or survivor, especially with the severity of the cancer patient’s treatment. For survivors, it certainly has the potential to bring them back to the world of near-death that they experienced during treatment.

EXPERIENCE

For every person who has survived cancer, that world of near-death is different. For me, it takes me back to my experience with sepsis when I had one white blood cell to fight for my life. My doctors in City of Hope’s ICU told my parents that they had tried everything and that there was nothing more they could do because my body was poisoning itself and my organs were shutting down. When most 16-year-olds were learning how to drive, going on their first date, and enjoying life, I was literally at death’s door. That’s the world I return to, which can be terrifying. It’s why I struggle mightily to go into medical facilities, even to this day.

Photo by MART PRODUCTION (Pexels)

RESEARCH

Since only small sample sizes of cancer patients and survivors have been evaluated, it’s hard to identify an exact percentage of the quantity of those afflicted with scanxiety. However, research has been able to narrow down symptoms.

Research shows that somatic (meaning, related to the body) symptoms of scanxiety include:

Difficulty sleeping (32%)
Feelings of dread (29%)
Poor concentration (26%)
Irritability (25%)
Restlessness/Agitation (24%)

Some less quantifiable symptoms include pain, lack of an appetite, and a racing heart, amongst many others. Cancer impacts people of all ages, demographics, and genders, which results in there not being much of a variance from children, women, or men related to those who experience and suffer from scanxiety.

Diminished scanxiety is quantified in several ways:

Past experience (81%)
Friendliness of the staff (88%)
Knowing what to expect for the procedure (81%)
Familiar location (71%)
Proximity of time of results (90%)

TREATMENT

As with most anxiety-related disorders, and as a person who has counseled those with anxiety, research shows that Cognitive Behavioral Therapy (CBT) is the most impactful course of treatment for a anxiety-related disorder. (APA, 2016) Through this form of therapy, patients learn how their thoughts are connected to their symptoms. With the guidance of a trained professional, by developing coping strategies, they can learn to change their thought patterns and reduce the episodes of anxiety they experience. It bears mentioning that this is a merely well-thought-out suggestion, as cases of anxiety are very specific to those who suffer from it, which also connects back to the severity of the person’s cancer.

HERE TO SERVE’S ROLE

At Here to Serve, we believe being with people through their entire journey is important. That is why we try to connect with cancer patients at diagnosis. One of the main coping strategies for anxiety is having safe people around you to help talk you through what you might still be going through. We want to be “safe people” and partners for our families.

However, we know that our capabilities only go so far, as do my clinical suggestions. For those reading this, perhaps some of the suggestions could be helpful, but I don’t know your full story, nor do I know you, and that does inform treatment plans and goals. We may not be a counseling center, but we provide patient resources beyond our scope with psychotherapy options for our patient families. If you or anyone you know has been recently diagnosed with cancer, please contact us so we can provide you with the wraparound care and support needed to manage a journey you neither asked for nor imagined you would have to take.

Author: Bryan Quintas, M.S. M.F.T.

Bryan Quintas is a Stage IV childhood cancer survivor. After Battling cancer at 16, he has endured life-long effects from his treatments. Even so, he graduated from USC’s Annenberg School with a Bachelor’s Degree in Communications. He also holds a Master’s Degree from Fuller Seminary in Clinical Psychology, specifically in Marriage and Family Therapy. He has dedicated his life and career to helping others through life’s challenges.

Information of the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance.

SOURCES

American Psychological Association. (n.d.). Beyond worry: How psychologists help with anxiety disorders. American Psychological Association. https://www.apa.org/topics/anxiety/disorders#:~:text=A%20form%20of%20psychotherapy%20known,that%20contribute%20to%20their%20anxiety.
Derry-Vick, H. M., Heathcote, L. C., Glesby, N., Stribling, J., Luebke, M., Epstein, A. S., & Prigerson, H. G. (2023, February 22). Scanxiety among adults with cancer: A scoping review to guide research and interventions. Cancers. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10000102/

The silent threat of sepsis

What you should know & how to stay prepared

09/17/2023

Never heard of Sepsis? You’re not alone.

According to the CDC, fewer than half of Americans have heard of sepsis, despite it affecting over a million Americans each year and being the leading cause of death in US hospitals. It is an even harsher reality that often lurks in the shadows for pediatric cancer. Sepsis and septic shock are one of the most common causes of critical illness in children with cancer, with a devastating mortality rate of over 40%. September is National Sepsis Awareness Month, so we’re helping to raise awareness of this deadly disease, and arming people with education on the signs, and how to prevent it.

What is Sepsis?

Sepsis is a serious illness that can develop when the body has an extreme reaction to an infection. A common misconception is that sepsis may also be referred to as “blood poisoning”, although these two terms should not be used interchangeably.

The immune system releases chemicals into the blood to fight infections, but sometimes those chemicals can cause major inflammation, which can lead to blood clots and organ damage. In severe cases, sepsis can weaken the heart, shut down other organs and cause death.

Who is at risk?

Sepsis can happen to anyone, but older people, young children, and those with weakened immune systems are more likely to be affected since their bodies have to work harder to fight off infections. Cancer and treatments like chemotherapy can also put someone at higher risk of developing an infection and sepsis.

Take the TIME to know the signs

Sepsis Alliance created a clever tool to help identify symptoms so you can quickly intervene. Time is of the essence when it comes to treating sepsis. Each hour that is delayed, the risk of mortality increases. Even after surviving sepsis, the longer it is in the body can cause long-term organ damage. The good news? Knowing these signs can have a huge impact and help save lives.

If you or someone you know is showing any of these signs, seek medical care IMMEDIATELY, and tell the healthcare professional that you are concerned about sepsis.

TEMPERATURE – higher or lower than normal
INFECTION – may have signs and symptoms of infection
MENTAL DECLINE – confused, sleepy, difficult to rouse
EXTREMELY ILL – severe pain, discomfort, shortness of breath

Prevention is key

Prevention is always better than cure. Taking actionable steps to help prevent infection can help lower the risk of sepsis.

Practice good hygiene, like washing hands often and brushing your teeth
Keep cuts clean and covered
Talk to your doctor about vaccines

The battle against sepsis in pediatric cancer patients requires continued research, advocacy, and awareness. Together, we can make a difference to ensure that every child fighting cancer is given the best chance at a healthy future.

Here to Serve is here for you

As parents, caregivers, and advocates, it’s our duty to take proactive steps to protect our children. But there is so much to consider when supporting children and families dealing with pediatric cancer, which can feel extremely overwhelming. Here to Serve is here to help. We’re here to ease the burden of those families dealing with this horrible disease. Check out the wide range of our services, and if you know someone on their cancer journey, get help today!

Author: Emily Rogalin

Emily Rogalin is a copywriter in healthcare advertising in NYC. Having lost multiple members in her family to cancer, she is honored to help bring support to families on this difficult journey.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance.

References:

Image References:

Childhood Cancer and School: Navigating Education During Treatment

Childhood Cancer and School

Navigating Education During Treatment

08/27/2023

As summer vacation nears its end, it’s time for students to return to school. However, this transition can be challenging, especially for children battling cancer. During the height of the Covid-19 pandemic, online learning provided flexibility for children battling cancer, allowing them to attend class from the comfort of their homes or hospital rooms. However, many schools are resuming in-person learning as Covid cases start to subside. This means rethinking how to continue your child’s education. With trips to the hospital and needing sufficient time to rest, continuing your child’s education in the classroom may not be as easily manageable as before.

For children who are hospitalized, it can be challenging to have a sense of normalcy in terms of school. Since many children battling cancer spend a significant amount of time in hospitals, adjusting to the social environment of returning to school can be difficult. Your child may also have medical needs that are challenging to accommodate in a traditional campus environment. To address these challenges, parents can explore alternatives to in-person school or find solutions to best support their child’s academic journey.

Alternatives to In-Person Learning

There are alternatives to returning to in-person learning for children who still physically can’t return to school.

IEP (Individualized Educational Plan)– An IEP or 504 plan is a program designed by parents and teachers to meet the individualized needs of the student best. Schools often offer these programs at no additional cost. The plan sets specific goals for the students while also providing learning accommodations. It can and usually does continue after treatment ends, and your child returns to school full-time. Be sure to schedule a reassessment once your child returns full-time.
Homeschooling– Children who are having trouble returning to school, whether for medical or social reasons, can start by homeschooling. Parents can create a more flexible schedule and spend more quality time with their children.
Private Tutor– Parents can also hire a private tutor to support their child’s academics. Private tutors hold expertise in certain subject areas and have the advantage of personalized and flexible learning as opposed to traditional schools. However, hiring a private tutor can be expensive and require more financial support.
Online Classes– Students can attend online classes anywhere as long as they have a computer and internet access. With online learning, students can enjoy the benefits of being able to revisit learning material and the flexibility to complete assignments in their own time.

Returning to the School Campus

With proper planning, returning to school can be smooth. Here are some precautions to ensure your child’s best possible learning experience:

Meet with the principal, counselors, school nurse, and teachers to let them know what to expect and when your child might be returning full-time. There may be forms that need to be filled out. Let them know about any medicine or health equipment your child has and how to handle emergencies or problems.
Your child may not have the energy for a long day of school. Help them build up their stamina leading up to the start of the school year. Take walks and see what your child can and can’t do. They may also need to be excused from certain physical activities and allowed more time on assessments.
It is also normal for your child to be nervous about returning to school, and there may be feelings of hesitation. Make sure to understand the reasons behind them. Consider contacting your child’s healthcare team, teachers, psychologists, social workers, child life specialists, or school counselors for guidance. Make sure school administrators and teachers know that your child needs to be treated like everyone else, except for special needs. Make sure special needs are not exaggerated or highlighted to embarrass the student.
If your child is having trouble with the social aspect of returning to school, you can prepare them by letting them know that the other students may not be familiar with cancer and have a lot of questions. Give them examples of how to respond to questions they feel uncomfortable answering and have teachers and nurses there to support them. You may want to take the time and invite classmates over to your home so they can have more close and friendly interactions with fun activities that don’t require a lot of physical endurance on the part of your child.
There is an excellent additional resource for information about returning to school as a cancer patient or survivor from the American Cancer Society: https://www.cancer.org/treatment/children-and-cancer/when-your-child-has-cancer/after-treatment/returning-to-school.html

Have You or Your Child Recently Been Diagnosed with Cancer?

Here to Serve is the only national nonprofit offering wrap-around services to navigate the personal side of the cancer journey. You have doctors and hospitals who can help with the medical treatments, but where do you get help with finances, household needs, and other resources you may not be aware of? Here to serve offers you a Family Care Coordinator and a customized online platform for friends and family to join in signing up to help with a multitude of tasks. They also offer hard-to-find resources for just about anything you may need. You only need to ask your Family Care Coordinator!

If you are a family with children impacted by cancer, please contact Here to Serve. Our team is here to help you navigate these challenging times and provide support. Please click the Get Help button on our homepage. Our team wishes you a joyous end of summer and an exciting new school year!

By Erin Li

Anxiety in Parents of Children with Cancer

Recognizing Anxiety and Seeking Assistance

08/20/2023

Childhood cancer diagnoses in 2022 alone totaled nearly 15,000. The American Cancer Society indicates a nearly 1% increase in cancer diagnoses yearly since 1975. For simplicity’s sake, let’s say that every one of those children diagnosed with cancer has two parents in their lives (although, unfortunately, that’s not always the case). Research detailed below shows that because of how anxiety impacts the family and parents of children fighting cancer, that’s nearly 20,000 new cases of anxiety every year in the United States from parents with children battling cancer. That does not even include the child battling cancer, which would increase the number to about 30,000.

These cases of anxiety often go undiagnosed and untreated. Anxiety is a continuing pandemic that goes unrecognized and not discussed, and people generally do not seek help because they don’t know they have it. Cancer is not only a disease that ravages the patient’s health but also the mental health of those who love and care for them.

THE ANXIETY PANDEMIC

Anxiety is the great equalizer of mental health: even people who seem like they have it all together on the outside likely struggle with anxiety on the inside. National statistics bear this out: The National Institute of Mental Health estimates that 19.1% of adults have experienced symptoms of various anxiety-related disorders over the past year alone. That means one in almost every five people you’ve encountered in life, whether you know them or not, are battling anxiety of some form. An estimated 31.1% of adults experience an anxiety disorder at some point in their lives, and of that 31.1%, 22.8% will end up having a serious impairment. These are stark overall numbers. Although Traumatic Stress is no longer categorized as an anxiety disorder in the 5th (and latest edition) Diagnostic Statistical Manuel (DSM-5), the co-morbidity is still prevalent enough to relate the two.

ANXIETY IN FAMILIES OF THE CRITICALLY ILL

Furthermore, as a parent, few can fathom the trauma-inducing anxiety of watching their child go through cancer treatments and fighting for their lives. The National Institute of Mental Health states that mothers generally range higher on the anxiety scale, very likely due to a woman’s higher biological capacity for heightened intuition and empathy. However, both mothers and fathers of chronically and seriously ill children trend higher on the anxiety scale. Parents of chronically and seriously ill children are nearly 95% more likely to face anxiety than those without an at-risk child. If you’re reading this correctly, it’s almost guaranteed that a parent with a child with cancer will experience anxiety. Additionally, there is nearly an increase of 30% in anxiety related to practical problems of daily life and parenting therein.

Make no mistake: Anxiety is a form of illness; mental illness, yes, but an illness, nonetheless. In a hypothetical situation of a family of 3, that means everyone in the house has some form of an illness. Anxiety can also cause physical disorders related to binge eating that can cause other illnesses, including, but not limited to:

Higher cholesterol (higher risk of heart attack)
Higher blood pressure (leading to hypertension and increased stroke risk)
Body tremors
Migraines

WHAT CAN YOU DO?

You may not be able to do all these things below but try to do at least half of them so you can care for your child the best way possible when you are able to relieve the anxiety you are experiencing.

Learn about your disorder. Recognize the level of anxiety you are experiencing and know this is a mental disorder that requires medical attention.
Take action and seek help. Talk to your doctor or mental health provider.
Seek psychotherapy and/or take medication as may be directed.
Keep a journal.
Join a support group, whether it be related to your child’s cancer or anxiety support group.
Socialize when possible.
Keep physically active, when possible.
Avoid Alcohol.
Eat healthily.
Learn time management techniques.

HERE TO SERVE’S ROLE

At Here to Serve, we sincerely believe that caregiving for those impacted by cancer extends far beyond the physical needs of the patient. While we believe that the patient’s physical needs are important and part of our assistance, our mission as an organization is to serve patient families because we are convinced that serving the families through their journey serves the patients themselves. If the parents are taken care of, they can care for their children. Here to Serve helps you manage your time, eat healthy, be a part of a support community and provide resources for parents to receive therapy and counseling. Depending on the form of anxiety or the specific anxiety disorder, therapeutic strategies vary from case to case.

However, speaking as one has counseled those with anxiety, an almost universal coping strategy for most anxiety-related disorders is communal support, or as we say in the therapy world: “safe people.” We seek to surround our patient families with a network of safe people they can trust in their most desperate hour of need, with the expectation of alleviating the anxiety that comes with navigating their child suffering from cancer.

Author: Bryan Quintas, M.S. M.F.T.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance.

What is the No Surprise Act?

No Surprise Act – What you need to know!

08/13/2023

The No Surprise Act (NSA) is a new law which became effective on January 1^st 2022. This Act is designed to protect insured patients from surprise medical bills, particularly in situations where patients received medical care from out-of-network providers without their knowledge or consent.

A great example of this is when a patient receives care at an in-network hospital or clinic with their insurance, but some providers or services involved in their care are not part of the patient’s insurance network, or in insurance lingo, are “out of network”. Common examples are providers such as anesthesiologists or radiologists, services such as labs and even emergent care such as air ambulance or hospital emergency room services. In these situations, the law limits out-of-network care at in-network rates.

Due to this being a new law, healthcare providers and insurance companies are working hard to implement new processes to adhere to these new standards, however mistakes can occur. As such it is important that families and patients are knowledgeable of this law and carefully examine any bills with patient balances due to out-of-network services.

How to ensure my medical bills are accurate?

There are three easy steps to follow to ensure any medical bills you or your family receive are accurate under the No Surprise Act:

Carefully review all medical bills with patient responsibility: Match the bill from the provider to the explanation of benefits (EOB) from your insurance carrier to confirm if the bill was processed at an in-network or out-network. If the claim was processed at out-of-network rates and the care was due to any of the below reasons, the bill is potentially inaccurate under the No Surprise Act.
- Emergency Room Visits
- Non-emergency care related to a visit to an in-network hospital, outpatient clinic or ambulatory surgical center
- Air ambulance services
Contact your insurance company to reprocess the claim: Contact your insurance company and inform them that you believe this claim qualifies under the No Surprise Act, providing helpful information regarding the emergent or supplemental care that should not be processed at out-of-network rates.
Contact the provider (who sent the bill with patient responsibility): Contact the provider who sent the bill, informing them that the insurance company is re-processing the claim. Also, inform them that this claim qualifies for the No Surprise Act and should not be billed to the patient at these rates. Ask for your account to be updated and for the bill to be placed on hold, to prevent any additional statements or involvement with collection agencies.

Typically, the above steps will result in the medical claim and bill being updated accurately, however if this does resolve the bill accurately and you feel the law isn’t being followed accurately, contact the Centers for Medicare & Medicaid Services No Surprise Help Desk. You can find helpful information on the Act as well as contact information here.

The financial burden on families facing pediatric cancer can be immense, as the average cost for a day in the hospital is reported at over $40,000 per day. Ensuring insurance company is processing your medical claims and any patient/guarantor responsibility accurately can help to reduce the cost and remove some stress.

At Here to Serve, we provide resources to assist families in facing the pediatric cancer journey. Check out the wide range of our services and consider d onating to cancer nonprofits like Here to Serve to help support families at the most difficult time of their lives.

About the Author:

A Board Member for Here to Serve, Jennifer Doner is a healthcare business leader who is passionate to improve health and well-being through advancing business strategy and driving innovation in the healthcare system.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance.

Celebrating Survivorship: The Story of the Torres Family

Celebrating Survivorship

The Story of the Torres Family

08/06/2023

Here to Serve works with many families as they go through their pediatric cancer journey. It is a privilege to be allowed into a family’s life during such a challenging time. While many of the journeys have a sad ending, the survivor stories give us hope. I recently had the opportunity to speak with Erika Torres, mother of cancer survivor Danielle Torres. I want to thank Erika for sharing her thoughts and feelings with me, and thank Danielle for allowing her story to be told.

The Diagnosis

In 2016 Danielle was diagnosed with B- Cell Acute lymphocytic leukemia (ALL). She was six years old. ALL is a fast-growing cancer of a type of white blood cells called lymphocytes. These cells are found in the bone marrow and other parts of the body. Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. It affects certain cells in the immune system, called B cells and T cells. ALL usually affects B cells in children.

The Beginning of Danielle’s Cancer Journey

At six years old, Danielle was a very active and cheerful little girl. Always up for an adventure, her parents were concerned when she began to be listless. Along with this, she had frequent, intense back pain, ran a fever, bruised easily, and had light colored gums. Multiple visits to the ER and her pediatrician frustrated them, as they believed her symptoms were something other than the “virus” the doctor insisted she had. The doctor’s also insisted that it was normal for a six year old to bruise, due to the nature of their activity while playing, and that she needed to eat more “greens”. By this time Danielle had been inactive for over a month due to her back injury, so her parents knew she wasn’t bruising due to activity. They were increasingly frustrated and worried that no one was listening to them. After Danielle’s pain became so excruciating that she could not walk, Erika and Dan made a stand: they would not leave the doctor’s office until a full blood panel had been ordered. The blood panels showed what their intuition had known, their little girl was very ill: her HGB was 6.0, which was extremely low. After running the blood panel a second time for accuracy, the doctor said a blood count this low was called “neutropenia,” which could mean three things: a post- viral infection, A-Plastic Anemia, or Leukemia. The next day, after a long day of 13 hours at the hospital, their worst fears were confirmed, with the diagnosis of B- Cell Acute lymphocytic leukemia.

The night of her diagnosis, they were guided into a private room, along with MDs, nurses, and a social worker. The doctor grabbed a box of tissues on their way in, and she and Dan knew it would be bad news. Erika remembers, “When they told us, the room began to spin. They left the room to give us some privacy. We both cried, Dan held me and told me that “this was the road we were on, we have to do this.” Hearing his words gave me strength. He shifted my thinking.” And to other parents, she says, “It’s ok to cry, to be devastated, sad, depressed. Many times I felt this way, I didn’t even want to get out of bed. But I knew I had to get up and keep pushing through. I needed to go to war for my child and save her from this beast!”

Danielle was admitted to Children’s Hospital in Los Angeles immediately and treatments, and their battle for her health, began. She started her chemotherapy and was fitted for a back brace. She was given 3 blood transfusions and 2 platelet transfusions, a bone marrow aspiration and 2 spinal taps. They would spend the next 14 days waiting for results and seeing how she would respond to the medication she was getting.

Although Danielle’s blood work showed no active cancer after 30 days, her journey had just begun: there would be treatments and hospitalizations four long years to insure she was cancer free. A very long journey, which would impact their entire family.

Support for Pediatric Cancer Families

There were so many kinds of support needed during this time. When you begin this type of journey, you are focused on the child that is ill. Advocating and caring for your sick child is more than a full-time job; and it’s an emotionally and physically draining. However, you also have other responsibilities: work, household, marriage, and family. Erika believes that the journey is so daunting that:

“Counseling should be a mandatory part of cancer treatment. When a child is diagnosed, you are laser focused on doing everything you can to save your child. Of course, this is necessary, but while you are focusing on your child time slips by and you don’t realize how much this shift in your lifestyle has affected everything else in your life: your relationship with your spouse, your other children, your overall life. Danielle’s sister, Breanna, is only two and half years older than Danielle, so she was also still a small child during the cancer journey. I will always feel that I missed so much of her childhood, as I was the one primarily responsible for Danielle’s care. This meant long stretches in isolation, either at home or in the hospital, while I cared for Danielle. Counseling helps you pull back a little and balance your life, to the benefit of everyone. Thankfully there is a movement in America to speak more openly about mental health and hopefully it will be made more available to all families in this situation.”

In addition to mental health counseling, Erika talked about the support provided by Here to Serve organizing their family friends during their journey. The Care Community Here to Serve set up helped with all the things you just naturally do during a normal day: shopping, cooking, cleaning and laundry. Their community page also gave them a way to communicate Danielle’s progress, as well as provide a way for family, friends and the community to contribute financially through the family’s online giving site. Here to Serve also made every Christmas special not only for the kids but her and her husband by providing almost every gift on the wish list. Erika shared what a blessing it was not to have to deal with holiday shopping and wrapping gifts during those four years.

What Sustained Them Through the Journey?

Erika feels that her faith in God during this difficult time was her rock. She writes beautifully about this in her journal during Danielle’s illness. As difficult as the initial diagnosis was, they felt a certain peace in their journey due to their trust in God and seeing that trust played out with the help her family received. Always very active in her church, she experienced incredible support from them and the wider Christian community through another local church.

The entire staff at Children’s Hospital was wonderful, professional and supportive. The kindness showed to Danielle was a blessing. Danielle still loves going to visit Children’s Hospital and seeing her nurses from that time. Erika laughed as she said, “It’s her safe place!”.

Throughout the journey Erika tried to see the positive, and found journaling helped keep her balanced. Writing about her emotions, anxiety, or Danielle’s medical treatment helped her process. She talked about how even now she has anxiety about Danielle’s health. An important day in every cancer patient’s journey is when they ring the bell to announce they are cancer free. Erika thought this action would bring relief, and of course it was a joyful day. At that moment though, she found herself becoming absurdly anxious with the realization that the hospital and the constant testing had served as a security blanket. Now the burden was squarely on their shoulders; the thought of missing a symptom was terrifying. She acknowledges what a huge, ongoing responsibility it is for parents of pediatric cancer patients. She finds meditation really helps to bring calm and remind her that Danielle is ok, she’s doing well.

The love they feel for each other as a family was also a strength that kept them going. Mid-way through the journey baby Landon joined the family, bringing joy and hope to all of them. Erika says, “While he may not remember it, he was along for the journey, spending much of his babyhood at Children’s Hospital with the rest of us. He really helped all of us, bringing a smile to our faces even during difficult times.”

Challenges Along the Way

Other than the obvious difficult diagnosis and treatments, I asked Erika what she found to be some of the biggest challenges.

“Returning to school was a big emotional challenge, both academically and socially. Although Danielle is a social child, the school missed during her illness and her uncertainty about how she would perform caused an immense amount of anxiety.”
“Not being there for Bre Although both Dan and her grandparents really stepped up and made sure she was cared for and loved, I couldn’t give her the same attention I gave before Danielle became ill. She still talks about it, and I still feel sad about what I missed in her life during that time.”
“One of the biggest challenges is that you have no control. Your life, and your family’s life is thrown into an ongoing state of unpredictability. Just when you think you have managed to get your family back on a schedule something happens with your child’s condition and its chaos once again. The lesson of letting go is a hard one, which required much prayer and meditation for me.”

The Journey Brought Positive Changes Too

While cancer journeys are incredibly difficult, some parents say they there were also some positive life changes. For example, a deeper faith, being more open to accepting help, being grateful for the small things.

Erika shares, you need a lot of trust to endure this journey, with all the hills and valleys you travel through. Before the diagnosis, she feels she was always in a hurry: rushing to get the children up, dressed, to school, to an activity. Now, she’s grateful for the “little moments”, and the ordinary daily activities like breakfast, taking the children to school, family meals. Before she became ill, Danielle was in a cheerleading squad and loved to cartwheel, jump, and tumble. Now in middle school, Danielle is on the volleyball team. “I can’t tell you how emotional it was to see Danielle in that first volleyball game. When we first took her to Children’s Hospital, she could not walk, and spent so much time in therapy. She still has some residual health issues from the cancer treatments. Seeing her jump up and hit that ball was one of the biggest moments of my life. She’s a fighter, but a fighter with a generous smile and sunny personality.”

Wrap-Around Non-Medical Support Is Critical

Again, thank you to the Torres family for sharing their story. At Here to Serve we have over twelve years of experience providing non-medical wrap-around services to families during their cancer journeys. This gap in the healthcare system remains a critical need for families with children battling cancer. If you, or someone you know, has a child with cancer, please contact us through our Here to Serve Website. The services we offer include:

Setting up a Care Community to organize:
- Communicating updates on your child’s condition to your community.
- Household help
- Childcare
- Meal delivery
- Special occasions
- Pet care
An extensive archive of resources, which can be tailored to your specific needs including funding and travel resources, tax help, insurance advocates, and more.
Create a targeted Go-fund Me page.

About the Author

Valerie Radford Cox has had a fulfilling career in the field of communications and institutional advancement. She is enjoying sharing her skills to provide information to the pediatric cancer community through the non-profit Here to Serve.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance. All photos in this article are from the Here to Serve archive or supplied by Erika Torres.

Unleashing the Power of Our Immune System: An Introduction to CAR-T Therapy

Unleashing the Power of Our Immune System

An Introduction to CAR-T Therapy

07/31/2023

In this blog, we dive into the exciting new world of CAR-T therapy, an innovative form of cancer treatment that has the potential to transform lives. We’ll explore the basics of using the immune system to fight cancer, delve into what CAR-T therapy is all about, learn about its FDA-approved applications, discuss potential risks and benefits, and provide you with reliable sources for further information.

Before diving into the overview of CAR-T therapy, we start with an inspirational story about the first pediatric patient to receive CAR-T therapy that is living proof of its game-changing potential 10 years later!

From Relapse with No Treatment Options to Cancer Free 10 Years Later: A Remarkable Story of the First Pediatric Patient to Receive CAR-T Therapy

In 2012, Emily Whitehead was a 6-year-old girl with acute lymphoblastic leukemia (ALL). She had already undergone two rounds of chemotherapy, but her cancer was still aggressive. Her doctors told her parents that there were no other treatment options available.

However, Emily’s parents were determined to find a cure for their daughter. They learned about a new experimental treatment called CAR-T cell therapy. CAR-T therapy is a type of immunotherapy that uses a patient’s own immune cells to fight cancer.

Emily was the first pediatric patient to receive CAR-T cell therapy for ALL. The treatment was a success, and Emily went into remission. She has now been cancer free for 10 years, demonstrating a real-world example of the exciting potential of CAR-T therapy.

To read more about Emily’s amazing story, explore the links below.

Immuno-Oncology: A Foundation for Understanding CAR-T Therapy

Our immune system is a remarkable network of cells, tissues, and organs working together to protect us from infections and diseases. Similar to how the immune system recognizes and fights infections, it’s constantly surveilling the body to find and eliminate cancer. The immune system is one of our greatest defenses against cancer – and leveraging its power has driven an explosion of research and development resulting in an entire field: Immuno-Oncology.

Immuno-oncology, or IO for short, is a branch of medicine that focuses on leveraging our immune system’s natural defense mechanisms to combat cancer. However, cancer cells can sometimes evade detection by the immune system, allowing tumors to grow unchecked.

CAR-T therapy is a pioneering approach within immuno-oncology that empowers the immune system to recognize and eliminate cancer cells.

What is CAR-T Therapy?

CAR-T therapy, short for Chimeric Antigen Receptor T-cell therapy, is a groundbreaking immunotherapy designed to bolster our immune system’s ability to fight cancer. The therapy involves a complex process that starts with harvesting a patient’s own T cells, a type of white blood cell.

These T cells are then genetically modified in the laboratory to express chimeric antigen receptors (CARs) on their surface. These CARs act as “guided missiles” that specifically target and bind to proteins found on cancer cells, triggering an immune response to destroy the cancerous growths.

How does CAR-T therapy work?

CAR-T therapy starts with collecting a sample of the patient’s T cells. These cells are then sent to a laboratory, where they are genetically engineered to produce a chimeric antigen receptor (CAR). The CAR is a protein that binds to a specific antigen on the surface of cancer cells.

Once the T cells have been engineered, they are multiplied in the laboratory and then infused back into the patient. The CAR-T cells then go to work, finding and attacking cancer cells that express the targeted antigen.

Types of Cancer FDA Approved for CAR-T Therapy

As of the writing of this blog post, July 2023, the Food and Drug Administration (FDA) has approved six CAR T-cell therapies:

Abecma® (idecabtagene vicleucel)
Breyanzi® (lisocabtagene maraleucel)
Kymriah® (tisagenlecleucel)
Tecartus® (brexucabtagene autoleucel)
Yescarta^TM (axicabtagene ciloleucel)
Carvykti^TM (ciltacabtagene autoleucel)

By cancer type, they are approved to treat:

Acute lymphoblastic leukemia (ALL): Kymriah is approved for patients up to age 25 with relapsed or refractory B-cell precursor acute lymphoblastic leukemia. ALL ranks among the most prevalent and deadliest types of cancer affecting children and young adults.
B-cell lymphoma: Yescarta, Kymriah and Breyanzi are approved for adults with relapsed or refractory large B-cell lymphoma.
Follicular lymphoma (FL): Yescarta is approved for adults with relapsed or refractory follicular lymphoma.
Mantle cell lymphoma: Tecartus is approved for adults with treatment-resistant or relapsed mantle cell lymphoma.
Multiple myeloma: Abecma and Carvykti are approved for adults with relapsed or refractory multiple myeloma.

Risks and Benefits of CAR-T Therapy

While CAR-T therapy has shown impressive results, it is essential to understand both the potential risks and benefits before considering this treatment option. First and foremost, since CAR-T is a relatively new approach to treating cancer, patients haven’t been followed for an extensive period to fully understand all effects, especially long-term.

Potential Benefits

CAR-T therapy has demonstrated remarkable success, offering durable remissions and, in some cases, potential cures for patients who have exhausted other treatments.

Potential Risks

Cytokine Release Syndrome (CRS):
- This immune reaction can cause fever, flu-like symptoms, and, in severe cases, organ dysfunction. However, medical teams are skilled in managing CRS, and a therapy has recently been FDA-approved for the treatment of CRS.
- Tocilizumab (Actemra®) is FDA-approved for the treatment of adults and pediatric patients 2 years of age and older with chimeric antigen receptor (CAR) T cell-induced severe or life-threatening cytokine release syndrome (CRS).
Neurologic Toxicity:
- Some patients may experience confusion, seizures, or difficulty speaking. Early detection and treatment are crucial to address these effects.
Other Known Side Effects
- The listed risks and side effects in this blog are not exhaustive, but other known potential risks include Tumor Lysis Syndrome, Macrophage Activated Syndrome, On-Target/Off-Tumor Toxicity (killing of healthy cells expressing the target), Anaphylaxis/Allergic Reactions, and others.

Sources and Where to Find More Information

If you wish to learn more about CAR-T therapy, its applications, and future research, reliable sources include:

gov: CAR T-cell therapy: https://www.cancer.gov/about-cancer/treatment/research/car-t-cells
National Cancer Institute: Chimeric Antigen Receptor (CAR) T-Cell Therapy: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/car-t-cell-therapy
American Cancer Society: CAR T-cell Therapy: https://www.cancer.org/cancer/managing-cancer/treatment-types/immunotherapy/car-t-cell1.html
OHSU Knight Cancer Center: CAR-T Cell Therapy for Cancer: https://www.ohsu.edu/knight-cancer-institute/car-t-cell-therapy-cancer
Leukemia and Lymphoma Society: Chimeric Antigen Receptor (Car) T-Cell Therapy: https://www.lls.org/treatment/types-treatment/immunotherapy/chimeric-antigen-receptor-car-t-cell-therapy#FDA%20Approved%20Treatments

Conclusion

As we conclude this introductory journey into the world of CAR-T therapy, we hope you now have a better understanding of this cutting-edge immunotherapy. It represents a beacon of hope for patients facing challenging types of cancer like Emily Whitehead and has the potential to revolutionize cancer treatment in the years to come. Remember to consult with medical professionals to determine the best treatment options for individual cases, and never hesitate to seek reliable information from trusted sources.

Here to Serve has been assisting families on their cancer journeys for over twelve years. In addition to organizing care communities, go-fund-me pages, and other daily needs, they have an extensive knowledge of resources that may be beneficial to finding new and effective cancer treatments. If you or someone you know is in need of assistance, please contact Here to Serve.

About the Author

Dr. Ned Swanson has a unique background combining scientific, clinical, and industry knowledge. He is passionately dedicated to improving outcomes for patients across the entire patient journey, from therapeutic innovation to comprehensive social support.

This blog is for informational and educational purposes only. For specific medical needs, please contact the appropriate medical professional.

All photos in this article are from the Here to Serve photo archive.

Herbal Supplements During Cancer Treatment: Are Supplements Helpful or Harmful?

Herbal Supplements During Cancer Treatment

Are Suppliments Helpful or Harmful?

7/23/2023

Herbs = natural = healthy, right?

Well, it’s not all black and white. While there are many pharmacological benefits to natural substances, there is potential for harmful drug interactions if someone is on a potent cancer treatment like chemotherapy.

Additionally, the United States Food and Drug Administration (FDA) does not regulate safety or labels before they get on the shelves, so it’s hard to be sure what you’re consuming. The potencies of herbal supplements can also vary greatly depending on harvesting.

None of this information is apparent, which is why July is Herbal and Prescription Interaction Awareness Month. Here to Serve wants to help bring awareness to this vital topic and empower you to share this information with others in your cancer circle. Of course, it’s essential to talk to your doctor regarding your or your child’s care plan and what supplements may or may not be appropriate.

Herbs can change the way drugs metabolize

Many herbs change the way a drug processes in the body. For example, if an herb increases the metabolism of a drug, it can reduce its concentration in the blood and its effectiveness. Meanwhile, decreased drug metabolism can increase the drug’s concentration in the blood, potentially leading to increased side effects. Additionally, herbs can raise or lower blood pressure, increase blood thinning and thereby the risk of bleeding, and change how your body reacts to sedation or general anesthesia.

What’s safe vs unsafe?

There are not sufficient data regarding most drug and herbal supplement Interactions. In fact, so many of their effects and reactions remain unclear and inconsistent. This can make navigating this part of the treatment process overwhelming and confusing. However, here’s some of what we do know:

Avoid all supplements when starting treatment or surgery. It’s typically recommended to stop taking herbal remedies and other dietary supplements one or more weeks before having surgery or starting treatment
Avoid antioxidants. Data varies about the use of antioxidants, like vitamin C. While some data suggests it can kill cancer cells or protect healthy cells, these supplements may also make these treatments less effective. Until more is known, it’s best to avoid them during treatment
Spices used for cooking are generally safe. However, if you cook with a spice often or in large amounts, check with your doctor to ensure that it doesn’t interact with treatment. For example, garlic has been associated with postoperative hemorrhage as well as interaction with anticoagulants
Some herbs are associated with greater drug-to-drug interactions. Particular parts of foods and supplements can alter the PK of specific types of drugs. This includes St. John’s wort, grapefruit juice, and epigallocatechin gallate from green tea
Herbs can help alleviate treatment side effects. Talk to your doctor about supplements that can assist certain symptoms. For example, ginger may help nausea, and Astragalus has been shown to reduce adverse reactions to chemotherapy

Want to look up a specific herb? Memorial Sloan Kettering Cancer Center has a database where you can search by herb and if there are any known drug-to-drug interactions. Of course, always check with your healthcare provider before incorporating any supplements into your or your child’s diet.

Get answers and help from Here to Serve

There is so much along the cancer journey that can feel overwhelming and confusing. Here to Serve is available to help lessen this burden on families. We provide resources on topics such as nutrition and other hard-to-find resources that may become more relevant to families at any point in the cancer journey. Learn more about the services from Here to Serve, and get help today if you or someone you know needs extra care.

Author: Emily Rogalin

Connect with Emily on LinkedIn. Emily Rogalin is a copywriter in healthcare advertising in NYC. Having lost multiple members in her family to cancer, she is honored to help bring support to families on this difficult journey.

This blog has been updated from its original post in 2021

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance.

References

Memorial Sloan Kettering Cancer Center

Integrative Medicine for Childhood Cancer Patients Definitions and Resources

This blog has been updated since initial posting in 2021.

07/16/2023

You just received the worst news any parent can hear…your child has cancer, and now you have to poison your child to cure it! You want what is best. You feel you have no other treatment choice than chemo because outcomes are quantifiable, tested, and have a history of curing cancer. You are scared, wishing you had healthy, alternative treatments, but don’t want to roll the dice with risky treatment choices.

Where Do You Turn for Advice?

Where do parents look for treatment help when their child is diagnosed with cancer? Most parents will turn to their oncology team, who are highly skilled at fighting pediatric cancer. But are there other options available than traditional, Westernized medicine? And are doctors open to including these treatments? Some families turn to integrative medicine for solutions. Integrative medicine (IM) is a form of medical care that merges standard medical care with complementary and alternative (CAM) therapies that provide positive healing to a child’s mind, body, and spirit.

Forms of Integrative Medicine and Complementary & Alternative Medicine

Some forms of IM and CAM include the following treatments:

Acupuncture-a method of inserting thin needles into the skin to stimulate specific areas of the body. Acupuncture is often used to reduce nausea and pain.
Diet/nutrition-a wide range of dietary modifications involving food choices such as low or no sugar, low-fat, high fiber, vegan, gluten-free, and other eating plans. Proper nutrition can minimize unpleasant symptoms and aid in treatment recovery.
Meditation/relaxation– a variety of techniques incorporating concentration and reflection to promote stress relief within the body and mind during and after cancer treatment.
Vitamins/herbal supplements-an assortment of treatment products that are generally taken by mouth or applied to the skin. They include multivitamins, which aid in the rebuilding of the immune system. Probiotics are supplements containing microorganisms that help improve digestion.
Yoga-a form of non-aerobic exercise which incorporates movement and breathing. The benefits of this exercise can improve flexibility and decrease stress and fatigue.

Each year more hospitals and cancer centers are starting to incorporate IM into cancer treatment programs. From the Stanford Center For Integrative Medicine to the Dana Farber Cancer Institute, medical organizations nationwide embrace the positive effects of IM and CAM therapies; this also includes pediatric cancer treatments.

Approach Your Child’s Doctors with Facts

It is important to remember that even though “complementary medicine” and “alternative medicine” are often grouped as “complementary and alternative medicine,” they are different. Like IM, complementary medicine is used along with traditional medicine, while alternative medicine is a replacement for conventional medicine. Parents must know the differences before starting research.

Even with IM and CAM therapies becoming more mainstream, there is still some reluctance from the established medical community about embracing these treatment types. There are some genuine reasons why alternative therapies are not fully embraced. They may cause adverse side effects when used with other cancer-fighting drugs. Oncologists explain that chemo kills cancer cells while adding vitamins and other body-building alternatives bolster good cells and cancer cells. There are also concerns that these alternative medicines are not thoroughly researched and are nothing more than cancer treatment fraud. So before approaching your child’s doctors, come prepared with solid research and factual information.

Trustworthy Internet Research

The internet is full of information, but it is not always accurate or trustworthy. An excellent place to start your research is accessing legitimate and trusted organizations such as the National Institutes of Health (NIH). This government agency is part of the US Department of Health and Human Services and is the nation’s leading medical research bureau. Within the NIH is the National Center for Complementary and Integrative Health (NCCIH). The goal of the NCCIH is to research “diverse medical and health care systems, practices and products that are not considered part of conventional medicine.” The NCCIH is a wealth of information regarding IM and CAM therapies.

Many other organizations provide information and questions to ask while talking to your child’s doctors. Some useful websites include:

NCCIH-finding and evaluating online resources

Webpage: https://www.nccih.nih.gov/health/finding-and-evaluating-online-resources
As noted above, additional information from the NCCIH site, specifically on finding information about complementary health and the questions to ask while conducting research.

Academic Consortium for Integrative Medicine & Health

Webpage: https://imconsortium.org/
Their mission is to “advance the principles and practices of integrative healthcare within academic institutions.” Their members include 70 academic medical centers and health systems across the United States.

The Academy of Integrative Health & Medicine

Webpage: https://aihm.org/directory
As an organization bringing together a global community of health professionals and health info seekers, this website provides integrative health information. The directory includes a list of board-certified physicians across the country.

US Food and Drug Administration (FDA)

Webpage: https://www.fda.gov/food/dietary-supplements
The FDA is the US government agency that oversees many products’ safety, such as foods, medicines, and nutritional supplements. This webpage provides specific information regarding dietary supplements.

MedlinePlus from the National Institutes of Health

Webpage: https://medlineplus.gov/druginformation.html
This US government organization (affiliated with the NIH) maintains the US National Library of Medicine site and includes dietary supplement and medication information.

Federal Trade Commission

Website: https://www.consumer.ftc.gov/articles/0104-cancer-treatment-scams
This US government agency works to prevent fraudulent and unfair business practices. The site includes useful consumer information on how to avoid cancer treatment scams.

Fight for Your Child’s Best Treatment Options

As pediatric cancer research progresses each year, the treatment options available to children fighting cancer also increase. Better treatment options are great news for parents, but finding the safest and best choices for their child can be overwhelming. Traditional medicine increases the cure rate for many children, but the treatment can be devastating and cause other health issues. Having IM and CAM prospects available to aid during and after treatment are vitally important. Talk to your doctor about what options would be beneficial and useful to your child. Do not be afraid to talk about IM and CAM therapies if you believe they can help. You are the best advocate for your child’s health.

At Here To Serve, we are devoted to you and your child during this uncertain time, providing judgment-free support during this cancer fight. Our Family Care Coordinators will help conduct a needs assessment and connect you with valuable resources tailored to your needs.

Author: Christopher Smith

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

Recognizing the Symptoms of PTSD

7/6/2023

There is no greater fear for a parent than the thought of losing your child to cancer. Losing a loved one is one of the most heart-wrenching experiences a person can go through; if the lost loved one is your child, it could seem, and sometimes is, unrecoverable physically and emotionally. No one prepares for such a loss, nor should they. Our children shape our lives and own part of our identity. So, losing a child is akin to a parent losing part of yourself. Memories of life with our child shape who we are as people, and when this precious child’s life is gone, so departs part of us. These once-happy memories invade daily thoughts and can incapacitate a parent for months and sometimes years.

An Estimated 3,180 Parents Will Lose a Child to Cancer This Year

It is estimated that 1,040 deaths from cancer will occur in the United States this year (2023) in children younger than 15. An estimated 550 deaths from cancer will occur in teens ages 15 to 19. The emotional blow associated with the death of your child can lead to a wide range of psychological and physiological problems, including depression, anxiety, cognitive and physical symptoms linked to stress, marital issues, increased risk of suicide, pain, and guilt. Losing a loved one, weeks, months, and sometimes years that follow seem to make time standstill. Parents are supposed to outlive their child, not bury them before they have lived a full life.

Trauma

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, which is an emotional response to a shocking, distressing event. There are several trauma symptoms, including nausea, dizziness, sadness, anger, denial, fear, shame, nightmares and/or difficulty sleeping, insomnia or altered sleep patterns, difficulty maintaining and starting new relationships, emotional and/or angry outbursts, gastrointestinal problems.

PTSD

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). 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 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.

There are many different symptoms someone with PTSD may experience. 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 ultimate death of the child
Aggressive and/or reckless behavior
Severe emotional distress or physical reactions to something that reminds 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

Getting 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 for some people. But, 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.

The symptoms of CGD include:

* Inability to focus on anything,

* 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.

Here to Serve

At Here To Serve, we believe that caregiving continues, even if the absolute worst happens when a child passes away. Supporting the families by checking in and encouraging their 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. Yes, therapy can help 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. Here to Serve is here to assist you during this difficult time.

About the Author

Bryan Quintas, M.S. M.F.T.

References

https://www.cancer.net/cancer-types/childhood-cancer/statistics

2023 Medicaid Renewals – What You Need to Know!

Here to Serve

In 2023, millions of patients risk losing their Medicaid coverage if they do not renew their eligibility. However, there is good news – there are a few simple steps to ensure you have access to medical coverage to enable the continuation of care and elevate stress.

Why Medicaid Redeterminations Are Occurring in 2023

The Families First Coronavirus Response Act (FFCRA) was a federal law enacted in response to the COVID-19 pandemic in March 2020. Among its provisions, the FFCRA introduced a continuous enrollment requirement for Medicaid, which was created to address concerns that patients could lose their Medicaid coverage due to changes in their circumstances or inability to complete the normal renewal process during the pandemic. Under this provision, states were required to maintain Medicaid coverage for existing beneficiaries without requiring them to go through the usual renewal process.

Preparing for the end of the COVID-19 public health emergency, States began the process for Medicaid eligibility determination. As it has been over three years since the continuous enrollment requirement was implemented, it may complicate communication for re-determination, as many patients may have moved during the past few years.

What Should I Do to Maintain Medicaid Coverage?

Verify or Update your contact information
- Contact your state Medicaid Office to update your address, phone number, and email address. When it is time for you to renew your Medicaid eligibility, the state will contact you.
  - For California, you can update your information at this site.
Understand your State’s deadlines. For California, you can find information here.
Complete all forms & information.
- Sign & return forms as soon as possible and before your state’s deadlines
  - You may be asked about the number of family members, income, expenses and other information.

What if I Am No Longer Eligible for Medicaid?

There are resources available to help you obtain medical coverage. Options can include:

Coverage through your Employment
- Many employers offer health plans as part of their employee benefits packages, and typically an employer will pay a part of the premium toward your health plan each month.
- Contact your employer and ask for information on their medical coverage. Ensure to inform them that you recently lost your Medicaid coverage, as it should qualify for a “Life Event” to allow you to enroll in coverage outside your employer’s typical enrollment processes.
Coverage through Affordable Care Act (ACA) Marketplace
- ACA Marketplace plans are sold on the health care Marketplace (also called the Exchange}. These are plans you can buy on your own for you – and/or your family.
- You can find more information at gov.

Being proactive to ensure you maintain medical coverage will enable access to care, reduce financial hardship, give peace of mind and will support families battling pediatric cancer. At Here to Serve, our care coordination resource can assist families in finding support. Check out the wide range of our services, and Donating to cancer nonprofits like Here to Serve allows your money to help support families at the most difficult time of their lives.

By Jennifer Doner

About the Author

A Board Member for Here to Serve, Jennifer Doner is a healthcare business leader who has been driven for over two decades to improve health and well-being through advancing business strategy and driving innovation in the healthcare system.

Photos in this article are AdobePhotoStock.

Surviving Cancer

Growing Awareness of Survivor Late Effects and Advances in Treatments

In the United States in 2023, an estimated 9,910 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,040 children are expected to die from the disease. Although cancer death rates for this age group have declined by 70 percent from 1970 through 2020, cancer remains the leading cause of death from disease among children. The most common types of cancer diagnosed in children ages 0 to 14 years are leukemias, brain and other central nervous system (CNS) tumors, and lymphomas.

According to the American Cancer Society, currently at least 483,000 cancer survivors were first diagnosed when they were under the age of 20. Advances in cancer treatment mean that today 85% of children diagnosed with cancer are alive at least five years after diagnosis. Many ultimately will be considered cured. Partially due to this increased rate of survival, there is growing awareness of health problems that develop years later because of a cancer treatment are known as late effects.

Surviving Late Effects

Greg Armstrong, M.D., M.S.C.E., at St. Jude Children’s Research Hospital in Memphis, Tenn., is the principal investigator for a research study to better understand these late effects, increase survival, and minimize harmful health effects.

Originally, childhood cancer survivors diagnosed between 1970 and 1986 were identified for this long-term, retrospective cohort study from participating centers in the United States and Canada. More than 14,000 survivors were surveyed and followed for long-term health outcomes. In addition, about 4,000 of their siblings were recruited as comparison subjects. Due to the significant changes in therapy for children with cancer over the past 30 years, a second group of about 10,000 survivors diagnosed between 1987 and 1999 and about 1,000 of their siblings were also recruited for the study. Therefore, the CCSS cohort includes three decades of survivors of cancers in children and adolescents.

Researchers gathered information from the survivors’ medical records on primary treatment exposure that included surgery, radiotherapy, chemotherapy, or a combination of treatments.

Researchers who have studied CCSS data so far have identified a number of potential late effects, including premature menopause, stroke, and subsequent cancers. Experts say childhood cancer survivors should get close, long-term follow-up from doctors who know about these kinds of complications.

Advancement in Treatment – Personalized Treatment

Along with the increased understanding of pediatric survivorship is the increased understanding of cancer treatment for pediatric cancer patients. Advances made over the last few decades have led to more children surviving cancer than ever before. And a better understanding of the disease means that more children with cancer are getting personalized treatments. Until recently, it was common for all kids with the same type of cancer to receive the same treatments, explains Dr. Will Parsons, a child cancer specialist at Texas Children’s Hospital. But the discovery of certain gene changes, called mutations, in cancer cells has started to change this. These mutations cause cancer cells to grow out of control.

A new type of treatment called targeted drugs can block the effects of these harmful mutations. They cause cancer cells to stop growing, or to die, without causing as much damage to normal cells. Targeted drugs often have fewer side effects than chemotherapy.

“Targeted drugs have gone from a theory to a reality over the past decade,” says Parsons. This breakthrough has been aided by faster and cheaper tests to pinpoint cancer mutations, he explains.

Researchers are testing ways to expand gene mutation screening for kids with cancer. One ongoing study is called Pediatric MATCH. The study is trying to match the mutation found in a child’s tumor with a drug targeted for the specific gene mutation, instead of for a specific type of cancer. CAR T cells are the newest, most personalized cancer treatment, and Here to Serve Board member Dr. Ned Swanson will cover this treatment in more detail in the Here to Serve July 2 blog.

Ultimately greater understanding of cancer and advancements in treatments mean more surviving pediatric cancer patients and more hope for families during their cancer journeys. Understanding treatments, resources for trials, financial assistance available, and navigating the myriad of resources can be overwhelming. Here to Serve has partnered with hundreds of pediatric cancer families over the past twelve years, and has a deep knowledge and understanding of the resources available.

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.

About the Author

Resources

National Cancer Institute
The Childhood Cancer Survivor Study https://www.cancer.gov/types/childhood-cancers#survivorship
https://www.cancer.gov/espanol
The American Cancer Institute https://www.cancer.gov/types/childhood-cancers/ccss
NIH: https://newsinhealth.nih.gov/2023/02/advances-childhood-cancer

Checkpoint Inhibitors for Pediatric Cancer: What’s New in Immunotherapy?

What’s New in Immunotherapy?

Checkpoint Inhibitors for Pediatric Cancer

Photo by Artem Podrez

Instead of relying solely on outside interventions such as surgery, chemotherapy, and radiation therapy, immunotherapy empowers the body’s natural immune system to recognize, target, and destroy cancer cells. It’s a safe bet that if you have a child with a cancer diagnosis, you’ve been searching every corner of the earth for the best and most advanced treatment for your child.

In past blogs, we’ve discussed new therapies like Chimeric Antigen Receptor T-Cell Therapy, which has shown great promise as a treatment option for pediatric cancer, especially for relapsed or refractory acute lymphoblastic leukemia (ALL). When they work, immunotherapies are a type of cancer treatment that harnesses the power of a person’s immune system to fight cancer cells.

Immunotherapy is highly specific, explicitly targeting cancer cells while sparing healthy cells. Unlike some traditional cancer treatments such as chemotherapy, immunotherapies could be advantageous because they do not cause damage to healthy cells in the body, making them a potentially less toxic option for pediatric patients.

The “new kid on the block” in pediatric immunotherapies are called Immune Checkpoint Inhibitors (ICIs). As a quick refresher, remember that we all have T-cells, a.k.a T lymphocytes. They are a type of white blood cell that plays a crucial role in the immune system. T-cells are responsible for recognizing and attacking foreign substances, such as viruses or bacteria, as well as cancer cells and other abnormal cells in the body. T-cells can recognize these foreign substances by their unique surface markers, called antigens, and can then mount a targeted immune response to eliminate the threat.

Why would we need them?

Our bodies all have checkpoint proteins within them. These proteins normally act as brakes on T- cells, preventing them from attacking healthy cells in the body. However, some cancer cells can produce proteins that interact with checkpoint proteins on T-cells, essentially telling the immune system to leave them alone. So cancer cells can sometimes confuse our T-cells into letting their guard down while trying to protect the body from cancer itself.

How do they work?

Cancer cells can use immune checkpoints to evade the immune system and avoid destruction. Checkpoint inhibitors are a type of immunotherapy that works by blocking certain proteins on the surface of immune cells that inhibit immune response against cancer cells. The PD-1 pathway, also known as the programmed cell death 1 pathway, is a mechanism that helps regulate the immune system and prevent the body’s immune cells from attacking healthy tissues. The pathway involves interactions between proteins on the surface of immune cells, such as T-cells, and proteins on the surface of other cells in the body, such as cancer cells or normal cells.

When activated, the PD-1 pathway sends signals to the immune cells to reduce their activity and prevent them from attacking healthy tissues. This can be beneficial in preventing autoimmune diseases, but it can also be harmful in preventing the immune system from attacking cancer cells or other abnormal cells in the body. As mentioned, certain cancers and viruses can take advantage of the PD-1 pathway to evade the immune system. They do this by producing proteins, such as PD-L1, that interact with the PD-1 protein on immune cells, effectively “turning off” the immune response and allowing cancer or virus to grow and spread.

Source Reference: https://iqbiosciences.com/

Status for Pediatric Cancer

Photo by cottonbro studio

The use of immune checkpoint inhibitors to treat pediatric cancers is still developing, as these therapies enhance T-cell responses to fight tumors that have been suppressed by inhibitory pathways.

Although ICIs have shown success in treating adult cancers, initial clinical trials using single-agent ICIs to treat a variety of pediatric cancers have been underwhelming, with few responses observed, except in pediatric classic Hodgkin lymphoma cases. This may be due to differences in the immunogenicity of childhood cancers compared to adult cancers, as pediatric cancers generally have fewer neoantigens (a new protein that forms on cancer cells when certain mutations occur in tumor DNA). Fortunately, there is renewed optimism that certain groups of children with cancer could experience positive outcomes through the use of ICI therapies.

The U.S. Food and Drug Administration (FDA) has approved some checkpoint inhibitors for treating specific types of pediatric cancers. However, ongoing clinical trials are necessary to gather additional safety and efficacy data before these medications can be more widely used in children with other types of cancer not mentioned below.

Pembrolizumab (Keytruda) -approved for adults and children aged 12 or older who have undergone surgery to remove stage IIB, stage IIC, or stage III melanoma and cancerous lymph nodes, and aims to reduce the risk of melanoma recurrence.

Nivolumab (Opdivo)– approved for the treatment of colorectal cancer in both adults and children aged 12 years and older. It is specifically used to treat microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) cancer that has spread to other parts of the body and has worsened despite previous treatment with fluoropyrimidine, oxaliplatin, and irinotecan hydrochloride (chemotherapy medications).

Atezolizumab (Tecentriq) -approved treatment option for alveolar soft part sarcoma that has either spread to other parts of the body or cannot be removed through surgery. In both adults and children aged 2 years and older, atezolizumab can be used alone or in combination with other drugs as part of the treatment plan.

It’s important to remember that checkpoint inhibitors are only approved for certain types of pediatric cancer and specific patient populations. However, there is ongoing research in this area, and new treatments and indications may be approved in the future. To learn more about FDA-approved medications for childhood cancer, please visit the National Cancer Institute’s website at https://www.cancer.gov/about-cancer/treatment/drugs/cancer-type.

The National Cancer Institute (NCI) offers a great website that you might find helpful! It provides a searchable database of clinical trials for pediatric cancer, along with information on how to enroll in a trial and what the process looks like. Additionally, the site includes resources for families and healthcare providers who want to learn more about pediatric cancer clinical trials. The website is called “Pediatric Treatment Editorial Board (PTEB) – Clinical Trials” and it can be accessed at https://www.cancer.gov/about-cancer/treatment/clinical-trials/pediatric-treatment-editorial-board.

Need Cancer Care Support?

At Here to Serve, we understand how overwhelming it can be for families when a child is diagnosed with cancer. Please remember that we are here to support you! If you are a family who has a child with a new cancer diagnosis or if you know of a family in this challenging situation, please don’t hesitate to contact Here to Serve. You can click on the ‘Get Help‘ button on our homepage to get started.

By Sameera Rangwala, M.S., M.P.H

About the Author

Sameera Rangwala spent over 15 years in the biotechnology industry and is currently a life science educator for children in grades 5-8. As a scientist and research professional, she uses her skills to blog and provides words of support to the cancer community.

All content in 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.

Effect of Cancer on Puberty in Adolescent Females

How Cancer Treatments Alter the Path to Adulthood

The side effects of cancer are already enough to deal with, but they’re even more complex for females in their adolescent years. If you’re reading this as a woman, you’ve already experienced the ups and downs of going through puberty. The changes, the hormones, the emotions–it all feels overwhelming for any adolescent as they figure out their identity and how they fit into the world. However, cancer treatments can alter the course of this crucial transformation for adolescent girls. Knowing more about these side effects can help you better support them through their journey.

Cancer Treatment Effects on Puberty

Cancer treatments such as chemotherapy and radiation therapy are essential therapies for fighting the disease. However, these treatments can affect organs that create a delicate balance of hormones and potentially disrupt the normal progression of puberty. It’s important to know that young children are unlikely to have these side effects, as the slowing of growth occurs within 5 years of receiving treatment. Some of the effects on puberty include:

Bone growth: Bones and muscle are very sensitive to treatments, so females who may typically experience a growth spurt during puberty are at risk for stunted growth if cancer treatment is within 5 years of puberty.
Hormones & the endocrine system: Radiation or surgery near the head and neck can cause damage to the pituitary gland, the main part of the endocrine system that regulates hormones and stress responses. Treatments may slow the release of growth hormones for females, which can slow sexual maturity. Growth hormones can be used to reverse these side effects, but should be discussed with a doctor to understand the full picture.
Ovaries and menstruation: Certain kinds of chemo can damage the ovaries. This is less likely to affect girls who haven’t been through puberty, but there is a risk for early or delayed puberty and menstruation. Girls may also experience irregular periods after treatment, although many women will experience irregularities regardless of treatments.
Fertility: Many are worried that cancer treatments will affect their fertility, but many survivors live to have healthy children. If it’s a concern for you or your child, it’s important to mention this to your healthcare providers so they can let you know how cancer treatments will affect future fertility. There are also several options to preserve fertility in females with cancer, depending on the age of the person.

Emotional and Mental Health

Adolescence is already a time of emotional vulnerability, and a cancer diagnosis during puberty can exacerbate the emotional and psychological challenges faced by young girls. It may be helpful to still try and engage young girls with the activities a typical preteen/teen goes through. Whether it’s buying her first bra or having a sleepover with her friends, anything that feels like a normal teenage experience can help better her mental health and overall development.

Hope & Here to Serve

Despite these vast effects on puberty and development, there are several paths for females that can help alleviate these effects after completing life-saving cancer treatments. Although these treatments are strong on the body, they help save lives. Research is always ongoing, meaning that there will be more ways to address these side effects in the years to come.

Here to Serve can help support adolescent girls and their families as they navigate through the cancer journey. Check out the wide range of our services, and if you know a family with children who has received a recent cancer diagnosis, get help today!

Author: Emily Rogalin

Emily Rogalin is a copywriter in healthcare advertising in NYC. Having lost multiple members in her family to cancer, she is honored to help bring support to families on this difficult journey.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance.

Photo references

Father’s Day Wishes and Thoughts

On the Needs of Pediatric Cancer Patient Fathers

On Father’s Day, Here to Serve would like to extend warm wishes for all fathers in the Here to Serve Community, especially those fathers parenting a child with cancer. These yearly milestones for families are very important; they indicate growth, challenges, and deepen family bonds.

Positive Life Changes for Fathers

When a family is on a cancer journey, these milestones can be monumental. And while the stresses and PTSD symptoms are important to acknowledge, there is also growing interest in understanding how families experience positive changes in the face of a life-threatening diagnosis in one of their children. Findings from recent studies indicate that fathers were able to find benefit in the cancer experience of their child leading to lasting positive changes in their lives in the areas of self-growth, spirituality, and relationships with others.

In a study conducted by University of Alabama at Birmingham (UAB), Division of Pediatric Hematology and Oncology at Children’s Hospital and partially funded by the National Cancer Association, father’s of cancer patients were asked to rank their answers to a series of questions such as:

Having a child with cancer has… taught me how to adjust to things I cannot change.
Having a child with cancer has… helped me become a stronger person, more able to cope effectively with future life challenges.
Having a child with cancer has… helped me become more focused on priorities, with a deeper sense of purpose in life.
Having a child with cancer has…taught me to be patient
Having a child with cancer has…Led me to deal better with stress and problems
Having a child with cancer has…helped me become more aware of the love and support available from other people

The results showed, on a scale of 1-5 (5 being the most positive), the fathers endorsed high levels of benefit finding (M=4.1 out of 5).

There are increasingly studies examining the benefit outcome of a life-threatening illness. Studies of PTSD symptoms and treatments are certainly more common, and the results of many benefit studies have limited participant scope.

Fathers During the Cancer Journey

For both areas of study, the acknowledgement of the unique position of fathers in the family cancer journey will hopefully help to provide support to fathers during this challenging time. Fathers’ experiences are relatively underreported in literature; their societal responsibility for family stability can sometimes create self-doubt for their own intense emotional reactions to medical treatments, difficulty in finding adequate treatments, feelings of vulnerability, and general worry.

Support is Crucial

One common result between both areas of study is that support from extended family, a place of worship, and health care professionals is crucial for parents of pediatric cancer patients. Further results indicate the immense benefits for fathers who participate in father-on-father group therapy sessions. Locating a father support group can sometimes present its own challenge: time and resources are limited, the focus is on supporting your child in every way possible.

Here to Serve has been supporting families through their cancer journeys for over 12 years. We are here to provide excellent, appropriate, and trusted resources and wraparound services that will meet your individual needs. Please don’t hesitate to contact us, just click on the website link to connect with us!

Author: Valerie Radford Cox

Valerie worked in the field of Institutional Advancement and Communications both internationally and domestically for many years. She now creates Story Coats in her studio in Oregon, and enjoys working with the Here to Serve Social Media team to expand the reach of their services to a greater audience.

References

Benefit Finding in Fathers of Childhood Cancer Survivors: A Retrospective Pilot Study, Authors: Molly A. Hensler, M.A.,1 Ernest R. Katz, Ph.D.,2 Lori Wiener, Ph.D.,3 Roger Berkow, M.D.,4 and Avi Madan-Swain, Ph.D.4
J Pediatr Oncol Nurs. 2013 May-Jun; 30(3): 161–168.
Children with Cancer: A Guide for Parents – NCI
https://pubmed.ncbi.nlm.nih.gov

5 Financial Challenges for Childhood Cancer Survivors

Here To Serve

Childhood cancer is a devastating experience for families, with significant emotional, social, and financial costs. Childhood cancer is relatively rare, but it is the leading cause of disease-related death among children under the age of 15.

The financial burden of childhood cancer can be overwhelming, and many families struggle to pay for treatment and care for several reasons.

Insurance Coverage: Many families do not have adequate health insurance coverage to cover the costs associated with pediatric cancer. Even families with good insurance may still have to pay a considerable amount out of pocket for deductibles, co-pays, and other expenses. Families without health insurance are even more susceptible to the financial challenges, as pediatric cancer treatment costs will be astronomical.
Lost Wages: Cancer treatment often requires extended hospital stays and frequent outpatient visits, which can lead to lost income for parents who need to take time off work to care for their child. This can be especially difficult for families who have only one income or who have limited paid time off from work.
Home Modifications: Families may also need to pay for home modifications, such as wheelchair ramps or other adaptations, to accommodate their child’s needs. This brings a whole new level of financial stress for young families battling pediatric cancer with the seemingly insurmountable cost of treatment.
Travel and Lodging: Families with a child diagnosed with cancer may need to pay for additional expenses, such as travel and lodging, if the child needs to receive treatment at a hospital far from home.
Ongoing Expenses: The trauma of pediatric cancer has the potential to create more expenses down the line. This can include financial, physical, mental, and emotional challenges that will incur additional expenses in the future.

Cost of cancer treatment has a huge impact on families’ lives. Many families report having to make difficult decisions about paying for treatment or food and other necessities to afford the cost of cancer. Some families may even be forced to rely on public assistance programs or declare bankruptcy to make ends meet.

The financial burden of childhood cancer is not just a short-term problem. Families may continue to experience financial difficulties even after their child has completed treatment. Children who have had cancer may require ongoing medical care and monitoring, which can be expensive. This has the potential to be an issue for the rest of their lives.

It is essential for policymakers and healthcare providers to work together to support families with a child diagnosed with cancer and to ensure that they have access to the resources they need to cope. Family and friends need to be there to support families battling pediatric cancer. Donating to cancer nonprofits like Here to Serve allows your money to help support families at the most difficult time of their lives.

Author: Ned Swanson

A Board Member for Here to Serve, Dr. Ned Swanson has a unique background combining scientific, clinical, and industry knowledge. He is passionately dedicated to improving outcomes for patients across the entire patient journey, from therapeutic innovation to comprehensive social support.

References

American Cancer Society. Childhood Cancer: Facts & Figures 2020. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/childhood-cancer-facts-and-figures/childhood-cancer-facts-and-figures-2020-2022.pdf
St. Jude Children’s Research Hospital. Financial Burden of Childhood Cancer. https://www.stjude.org/treatment/patient-resources/financial-information/financial-burden-of-childhood-cancer.html
Children’s Oncology Group. Childhood Cancer and the Cost of Care. https://www.childrensoncologygroup.org/index.php/new-family-resources/financial-resources/childhood-cancer-and-the-cost-of-care
National Cancer Institute. Coping With Cancer: Financial, Legal, and Work Issues. https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/financial-legal-and-work-issues
Healthcare Cost and Utilization Project. Statistical Brief #290: Costs of Pediatric Cancer Hospitalizations, 2016. https://www.hcup-us.ahrq.gov/reports/statbriefs/sb290-Pediatric-Cancer-Hospitalizations-2016.jsp
Landier, W., Bhatia, S., Eshelman-Kent, D., Forte, K., Sweeney, T., Hester, A., … & Blatt, J. (2011). Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group long-term follow-up guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. Journal of Clinical Oncology, 29(28), 4200-4210.
Hinds, P. S., Oakes, L. L., Hicks, J., Powell, B., Srivastava, D. K., Spunt, S. L., … & Furman, W. L. (2009). “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. Journal of Clinical Oncology, 27(35), 5979-5985.

Why 25% of Patients Can’t Afford the High Cost of Cancer Care

The good news is organizations can help families navigate their cancer journey

“No one saves for cancer. And it’s devastating to deal with financial problems on top of dealing with your diagnosis” Megan Rizzo-Canny

According to the CDC, cancer is the second leading cause of death in the US and is responsible for a shocking 600,000 deaths per year. An eye-opening survey conducted by the CDC revealed that 1 in 4 cancer patients struggle to pay their medical bills and 1 in 3 worry about how they will be able to pay the out-of-pocket medical expenses incurred.

High Cost of Cancer Care

When someone is diagnosed with cancer, it may involve a long-term treatment plan with multiple doctor visits, labs, surgeries, different types of medications, and complementary therapies. It is not just the financial burden of the cancer treatment that patients and their families have to deal with but myriad other expenses as Peter Ubel, a Physician and behavioral scientist at Duke University explains in this excerpt: “When people with cancer have trouble paying their medical bills, you can bet they are struggling to pay their mortgages, their rents, maybe even their weekly grocery bills.”

Considering the fact that in 2019 alone the out-of-pocket expenses for breast cancer treatment were a staggering $3.14 billion, it comes as no surprise therefore that out-of-pocket expenses can potentially lead to financial ruin considering the fact that not many have money saved for a rainy day. According to Joanna Fawzy Morales, a cancer rights attorney and CEO of Triage Cancer, some other factors that can contribute to higher out-of-pocket expenses include:

Not having adequate health insurance coverage.
Having a plan that doesn’t cover the providers they want to see or their life-saving prescription medications.
Their healthcare plan has a high deductible or out-of-pocket maximum.

Because of the high cost of medications, the out-of-pocket maximum on private insurance plans is often reached within the first few months after receiving a cancer diagnosis. Moreover, they have to repeat the same process of meeting the deductible and out-of-pocket maximum once their plan renews or they switch to a new plan. For those who are uninsured, the high cost of medical care can become a barrier to receiving high-value medical care, and what is worse, they may even be charged higher rates for their treatment than those with health insurance.

It is no wonder that a KHN-NPR investigation of America’s nagging healthcare debt issue showed that even though there are 100 million people who are in some form of medical or dental debt, few suffer more than those who have cancer.

Income Loss and Workplace Discrimination

Apart from the high cost of medical care in the US, cancer patients or their loved ones find themselves in dire financial circumstances due to lost wages as a result of the inability to work during treatment.

Usually, people need time off once they receive a cancer diagnosis in order to go to their appointments and recover from the treatment or surgeries. While some are able to do so without losing their jobs or medical benefits, that is not always the case due to workplace discrimination.

Source: https://www.breastcancer.org/

In the case of Megan Rizzo-Canny, the sole breadwinner of her household and diagnosed with breast cancer at the age of 38, her employer initially promised they would let her keep her job but later reneged. She learned that she had just 2 weeks of salary and coverage left just as she was completing chemotherapy and getting ready for surgery but she did not take it lying down as this excerpt explains: “Rizzo-Canny fought back by finding a law firm that would take on her case on a no win, no fee basis and sued her former employer. Rather than charge her legal fees, the law firm agreed to take a percentage of the settlement if they won the case. Her lawyers negotiated an out-of-court settlement that allowed her to keep her employer-provided health insurance for a few more months and helped her get access to disability insurance benefits that provide income for her family.”

The self-employed, part-time, or gig economy workers who are uninsured or underinsured are especially vulnerable. They may never recover financially due to the expensive cost of cancer treatment for patients without health insurance in the US.

How to Get Help

A cancer diagnosis can cause stress and anxiety when considering the long and arduous journey ahead, however, there are organizations that provide relief in the form of cancer care, transportation, and even housing.

One such organization that is able to provide wraparound services to meet the daily living needs of young families navigating cancer throughout the journey?

Katie Quintas founded Here to Serve, a pediatric cancer charity based in California, from her experience dealing with the cancer diagnoses of both her husband and son: “I conceived of Here to Serve to organize and bring together, not only the community of volunteers who wish to help but also the many support services that often go untapped because you either are not aware of them or do not have the energy to seek them out.”

How can Here to Serve help your family?

Provide hard-to-find pediatric cancer resources at the start and throughout treatment as needs arise. With over twelve years of experience identifying foundations that provide funds for pediatric cancer patients, Here to Serve can drastically reduce the time a family spends researching funding sources. They are also experts at setting up effective Go-Fund-Me pages for families.
Family care coordinators mobilize others to meet the daily living requirements of families with children battling cancer for the entirety of their cancer treatment, which for some can mean years.
Online Care Communities provide a network of services and financial assistance for families caring for their child or spouse battling cancer.

I invite you to share this post with families who are struggling with cancer so they can get support in their journey from Here to Serve.

By Yana BG
Originally published on Medium

How a Cancer Diagnosis Impacts Young Families and What They Can Do to Get Help

Did you know that cancer is the second leading cause of death among children?medium.com

7 Ideas to Celebrate Mother’s Day with Childhood Cancer Moms

How to Support the Mother of a Pediatric Cancer Patient

Mother’s Day is a day to celebrate the love and bond between a mother and child. Mothers caring for their families during a cancer journey certainly deserve to be celebrated!

If you know a mom who has a child with cancer, here are a few simple things you can do to show your support on Mother’s Day.

Help with practical tasks: whether it’s picking up groceries, running errands or doing some light cleaning, offering to help caregivers with practical tasks can take some of the pressure off a mom who is already juggling a lot.
Send a thoughtful card or gift: A heartfelt message or small but special gift can go a long way in showing a mom that you’re thinking of her on Mother’s Day. Consider a personalized gift that recognizes the strength and resilience she demonstrates as she cares for her child. Pediatric cancer patients can thank their mom for her lifelong support with a thoughtful and genuine DIY gift.
Make a donation in her honor: Consider donating to a cancer charity or organization in her honor. This can show your support for her and a cause that is close to her heart. Donating to Here to Serve is a way to give directly to cancer families.
Offer to spend time with her child: Moms can be the most active caregivers for children with cancer. Give the mom some time to herself for a much needed and well deserved break. Offering to spend time with her child can be a meaningful gesture, allowing her to recharge and take care of herself, knowing that her child is in good hands.
Acknowledge her strength: Let her know how much you admire her strength and resilience in the face of such a difficult situation. Tell her that you are there for her and that you are proud of her.
Plan a fun day with her: this might involve going to the movies, making reservations for dinner at her favorite restaurant or seeing a concert. Ask what she wants to do and plan accordingly.
Listen: sometimes, all a mom needs is someone to listen. Demonstrating that you are there to listen and that you care about what she has to say will be meaningful.

While Mother’s Day is a day of celebration, it can be a tough day for moms whose children have cancer to enjoy with all the challenges involved in this difficult time. Your kindness and compassion can help make it a little easier. Celebrating the joys of motherhood and while supporting them through tough times along the pediatric cancer journey will let the moms in your life know that they are seen, loved and not alone.

Here to Serve was founded by Katie Quintas, a mother of a cancer survivor, and has served hundreds of families during their cancer journeys by providing non-medical wraparound services. At Here to Serve, our resource referrals can assist pediatric cancer families in finding mental health resources, financial services, transportation, lodging, organizational assistance, spiritual support, and more. If you or someone you know could benefit from our services, please contact us for help.

Author: Hayley Charles

Hayley Charles works in the hospitality field and is passionate about the advancement of mental and behavioral health services in rural areas. She enjoys dedicating her personal time to the growth of Here to Serve by writing informative and uplifting blogs.

Information on the Here to Serve website is for educational and informational purposes only. Please consult a medical professional for specific medical guidance. All photos in this article are from the Here to Serve archive.

Emotional Burden of Childhood Cancer

Here To Serve

A cancer diagnosis is a life-changing upheaval for anyone, but it can be especially difficult for families with a child who has been diagnosed with cancer. The psychosocial and emotional strain of childhood cancer can be overwhelming, and it can have lifelong effects on both the child and their family.

The challenges of childhood cancer materialize in many ways. Children can feel fear, anxiety, depression, and a sense of isolation while going through treatment. Kids with cancer may also struggle with the physical effects of treatment, such as nausea, fatigue. Experiencing hair loss can impact a child’s self-esteem and body image as they may feel different from other kids. This pain can lead to social isolation and loneliness.

Emotional tolls on families with children battling cancer can be just as challenging. Parents may experience feelings of guilt, anger, and helplessness. They may also feel overwhelmed by the demands of caring for a child with cancer, including managing treatment schedules, coordinating medical appointments, and providing emotional support. Siblings of cancer patients may also experience a range of emotions, including jealousy, guilt, and anxiety.

The burden of childhood cancer can have long-lasting effects on the child and their family. Children who have had cancer may be at increased risk for mental health problems, such as anxiety, depression, and post-traumatic stress disorder (PTSD). Parents of children with cancer may also experience long-term emotional distress, including symptoms of anxiety and depression.

It is important for healthcare providers to recognize the emotional effects of childhood cancer and to provide appropriate support and resources. This can include psychological counseling for both the child and their family, support groups for parents and siblings, and educational resources to help families understand they are not alone.

Battling childhood cancer can be overwhelming for everyone. Children with cancer may experience fear, anxiety, and social isolation, while young families battling cancer may feel overwhelmed and helpless.

Get help if you are experiencing issues while battling pediatric cancer. Cancer nonprofits like Here to Serve are here to support your entire family for everything you’re missing after you leave the hospital.

Author: Ned Swanson

References

American Cancer Society. Childhood Cancer: Facts & Figures 2020. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/childhood-cancer-facts-and-figures/childhood-cancer-facts-and-figures-2020-2022.pdf
St. Jude Children’s Research Hospital. Psychosocial Support for Patients and Families. https://www.stjude.org/treatment/patient-resources/caregiver-resources/patient-and-family-support.html
Children’s Oncology Group. Emotional and Social Support. https://www.childrensoncologygroup.org/index.php/new-family-resources/emotional-and-social-support
National Cancer Institute. Coping With Cancer: Supportive and Palliative Care. https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/supportive-palliative-care
Kazak, A. E., & Alderfer, M. A. (2019). Psychosocial and Behavioral Issues in Cancer Care. In Holland-Frei Cancer Medicine (pp. 1-21). Wiley-Blackwell.
Yi, J., Zebrack, B., Kim, M. A., & Noh, D. Y. (2015). Financial burden, employment status, and quality of life in Korean cancer survivors. Journal of Psychosocial Oncology, 33(2), 136-150.