5 Financial Challenges for Childhood Cancer Survivors
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.
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.
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
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
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
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
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.
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.
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.
4 Challenges to Surviving Pediatric Cancer
4 Challenges to Surviving Pediatric Cancer
A Journey that Requires Physical Strength and Emotional Fortitude
Surviving cancer is a difficult journey that requires not only physical strength but also mental and emotional fortitude. It is a challenging process that demands significant sacrifices from the patient and their loved ones. Along with the physical aspect of cancer, there are several other components that make it difficult for cancer survivors to overcome.
1. Social Survival
Social support is critical for cancer patients to cope with their illness and to navigate the challenges of treatment. Social support can come from a variety of sources, including family, friends, support groups, and healthcare professionals. It is essential to have a support system in place to provide emotional and practical support during this challenging time. This can include help with transportation, meal preparation, or even just a listening ear. Research has shown that cancer patients with strong social support have better outcomes than those who do not.
2. Spiritual Survival
Cancer patients often experience a crisis of faith, asking questions such as “Why me?” and “What did I do to deserve this?” Spiritual and religious practices can help cancer patients find meaning and purpose in their illness. For many cancer survivors, faith and spirituality provide a source of hope and comfort during their treatment. This can include prayer, meditation, or attending religious services. Studies have shown that spiritual and religious practices can improve cancer patients’ emotional and psychological well-being and can even have a positive effect on physical health outcomes.
3. Emotional Survival
Cancer is a traumatic experience that leads to mental health issues, like anxiety, depression, and post-traumatic stress disorder (PTSD). It is crucial for cancer patients to receive emotional support to help them cope with these feelings. This can come from family, friends, support groups, or professional counseling. Emotional support can help patients manage their anxiety and depression, which can improve their quality of life and even contribute to better treatment outcomes.
4. Financial Survival
Cancer can be costly – 1 in 4 patients can’t afford the cost of care. The financial burden of treatment can cause significant stress for cancer patients and their families. Medical bills, lost income, and other expenses can quickly add up, leading to financial distress. Patients may be eligible for financial assistance from charities, government programs, or their healthcare provider. It is essential for patients to understand their options for financial support and to seek help if needed.
Surviving cancer is hard. It requires more than just recovery of physical ability. Pediatric cancer patients are challenged socially, spiritually, emotionally, and financially while battling cancer. Children and families need support systems in place to handle the challenges of cancer treatment.
Faith and spirituality can provide a source of hope and comfort during this difficult time. Emotional support can help patients manage their anxiety and depression, while financial assistance can alleviate the stress of medical bills and expenses. With the help of these essential components, pediatric cancer survivors can overcome the challenges of their illness and move forward with hope and resilience.
Here to Serve has served hundreds of families during their cancer journeys by providing non-medical wrap around services. At Here to Serve, our resource referrals can assist 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, sign up here.
Author: Dr. 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.
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.
References
- National Cancer Institute. Social Support for Patients with Cancer. https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/social-support
- National Cancer Institute. Spirituality in Cancer Care. https://www.cancer.gov/about-cancer/coping/feelings/spirituality
- American Cancer Society. Coping with Emotions. https://www.cancer.org/treatment/treatments-and-side-effects/emotional-side-effects/coping-with-emotions.html
- 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
- Henson, K. E., Brock, R., Charnock, J., Wickramasinghe, B., Will, O., & Pitman, A. (2019). Risk of suicide after cancer diagnosis in England. JAMA psychiatry, 76(1), 51-60.
- Penedo, F. J., & Dahn, J. R. (2005). Exercise and well-being: a review of mental and physical health benefits associated with physical activity. Current opinion in psychiatry, 18(2), 189-193.
- National Comprehensive Cancer Network. Distress Management. https://www.nccn.org/patients/resources/life_with_cancer/distress_management.aspx
- Tsoi, K. K. F., Hirai, H. W., Chan, F. C. H., Griffiths, S., & Sung, J. (2016). Social Support and Its Association With Mortality Among Older Adults in China. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 71(1), 107-115.
Thoughts of Suicide in Pediatric Cancer Patients
Thoughts of Suicide in Pediatric Cancer Patients
Recognizing Signs of Suicidal Thoughts in Young People
Photo by cottonbro studio
Sadly, 2023 data on youth suicide shows that it is the second-leading cause of death among people aged 15 to 24 in the U.S. Almost 20% of high school students report severe thoughts of suicide, and 9% have attempted to take their lives, according to the National Alliance on Mental Illness (NAMI).
May is National Mental Health Awareness Month. Here we’ll focus on the critical and life-threatening issue of suicide among young people with cancer. Mental health issues are often stigmatized, and many young people may feel ashamed or embarrassed to seek help. National Mental Health Awareness Month for youth can help reduce this stigma and encourage young people to seek the support they need.
Dr.Carl Fleisher, who specializes in adolescent and child psychiatry at UCLA Health, explains that teenagers and young adults have rising rates of suicide compared to 10 or 15 years ago. He stresses that how young people feel about themselves in social standing and physical appearance plays a significant role in feelings of inadequacy that can lead to thoughts of suicide. He explains that developmentally, their judgment and decision-making abilities are still processing, which might make young people more impulsive with their feelings. Dr. Fleisher says: “They’re not going to weigh risks and consequences or values in quite the same way that older folks will.”
Now, imagine being a teenager or young adult with cancer. There is evidence to suggest that there is a correlation between cancer and suicide. The stress and emotional burden of cancer can increase the risk of suicide in cancer patients and survivors. The risk of suicide may be higher in younger cancer patients with more advanced cancer or a history of mental health issues. As parents and caregivers, it is imperative to stay vigilant and look for signs and symptoms that might start thoughts of suicide.
Warning Signs
Psychological distress: Experiencing high levels of psychological distress, such as anxiety, depression, and post-traumatic stress disorder (PTSD).
Body image issues: Cancer treatment can cause physical changes to a teenager’s appearance, such as hair loss, weight changes, and scarring. These changes can lead to negative body image and self-esteem issues.
Photo by Josh Hild
Physical symptoms: Cancer treatment can be physically grueling, causing pain, fatigue, and other symptoms impacting a child’s quality of life. Chronic pain and other physical symptoms can contribute to hopelessness and despair.
Substance use: Some teenagers with cancer may turn to drugs or alcohol to cope with cancer’s emotional and physical pain and its treatment.
Talking about suicide: If a young person is talking about suicide or making comments like “I wish I were dead” or “I want to kill myself,” it is a significant warning sign of suicide risk.
Withdrawal: Any significant changes in behavior or routine, such as withdrawing from friends and family, isolating themselves, or becoming more irritable or angry, can be a sign of suicidal ideation.
Mood changes: Mood changes such as increased sadness, hopelessness, or irritability may indicate that a young person struggles with depression or other mental health conditions that can increase the risk of suicide.
Reckless behavior: Engaging in reckless or impulsive behavior, such as driving under the influence or not adhering to rules meant to protect them through their cancer treatment, can indicate that a young person is struggling with mental health challenges and may be at risk of suicide.
Giving away prized possessions: pre-maturely giving away prized possessions or making final arrangements can signify that a young person is considering suicide.
If a parent or caregiver notices any of these warning signs, it is essential to seek help immediately. Talking to the young person about their feelings, seeking support from a mental health professional, contacting a crisis hotline, or taking them to the emergency department for evaluation are some ways parents can help. It is essential to take any warning signs of suicide seriously and seek help immediately.
Attempts
The pre-cursor causes of suicide listed above are critical to look out for but what about an actual attempt? Suicide prevention is a crucial component of cancer care, and healthcare professionals work to minimize suicide risk among cancer patients when hospitalized. However, there may be some critical things that a caretaker at home needs to pay attention to. Here are some potential ways a cancer patient might attempt suicide:
Overdose: using pain medication or other medications to overdose.
Refusal of treatment: refuse treatment or stop taking medication, which could result in death.
Self-harm: engage in self-harm behaviors, such as cutting or burning themselves, to cope with emotional distress.
Access to weapons: access to firearms or other weapons may be at risk of suicide by firearm.
Suffocation: attempt suicide by suffocation, such as by hanging or drowning.
Photo by Polina Zimmerman
Resources
Whether a patient or a parent, you don’t need to tackle suicide alone. You are not alone and not the only person or family suffering from the thought of ending life. Because cancer can compound suicidal thoughts and feelings, it’s essential to look into the resources available to you. Early intervention can save lives. When youth suicide warning signs are identified early, it is possible to intervene and prevent suicide attempts or death.
Lastly, suicide has a profound impact on families and loved ones. Seeking resources for youth suicide not only helps prevent suicide but also provides support and resources for bereaved families. Resources for youth suicide include hotlines, counseling services, peer support groups, and education and awareness campaigns. It is important to seek help and support for anyone struggling with suicidal thoughts or behaviors or concerned about a young person’s mental health.
Free HELP:
988 Suicide & Crisis Lifeline
The Lifeline provides 24/7, free and confidential support for distressed people, prevention and crisis resources for you or your loved ones, and best practices for professionals. If you’re thinking about suicide, are worried about a friend or loved one, or would like emotional support, the Lifeline network is available 24/7 across the United States. You can call or text 988 or chat at 988lifeline.org.
Crisis Text Line
Text Line is free, with 24/7 support for those in crisis. Text 741741 from anywhere in the U.S. to text a trained Crisis Counselor. Crisis Text Line trains volunteers to support people in crisis. With over 79 million messages processed to date, they are growing quickly, but so is the need.
#Chatsafe: A Young Person’s Guide for Communicating Safely Online About Suicide The #chatsafe guidelines have been developed in partnership with young people to provide support to those who might be responding to suicide-related content posted by others or for those who might want to share their feelings and experiences with suicidal thoughts, feelings, or behaviors.
Help a Friend in Need: A Facebook and Instagram Guide (PDF | 524 KB)
Facebook and Instagram are proud to work with The Jed Foundation and The Clinton Foundation, nonprofits that work to promote emotional well-being and to share potential warning signs that a friend might be in emotional distress and need your help.
Seize the Awkward
Nobody likes an awkward silence. But when it comes to mental health, awkward silences don’t have to be a bad thing. This campaign encourages teens and young adults to embrace the awkwardness and use this moment as an opportunity to reach out to a friend. The campaign focuses on that moment to break through the awkward silence to start a conversation about how they’re feeling.
What to Do if You’re Concerned About Your Teen’s Mental Health: A Conversation Guide (PDF | 617 KB)
A guide to help parents and families concerned about their teen’s mental health and emotional well-being have important conversations with their child. Although parents often pick up on concerning signs that their teen is struggling, not everyone feels well-equipped to approach their child to have a conversation about how they are feeling.
Youth Mental Health First Aid
Designed to teach parents, family members, caregivers, teachers, school staff, peers, neighbors, health and human services workers, and other caring citizens how to help an adolescent (age 12–18) who is experiencing a mental health or addiction challenge or is in crisis.
(Source:https://www.samhsa.gov/childrens-awareness-day/resources-suicide-prevention)
Need Support?
Here To Serve understands that cancer can be an extremely stressful experience for anyone, including teenagers and young adults. Adolescence is already a period of significant emotional and physical changes, and a cancer diagnosis can compound those challenges. Remember, we are here to support you during National Mental Health Awareness Month and year-round! Please contact us to get help as soon as possible.
By Sameera Rangwala, M.S., M.P.H
About the Author
Sameera Rangwala spent 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.
Should I be an organ donor?
Should I be an organ donor?
To Be, or Not to Be…an Organ Donor
Photo by Karolina Grabowska
Donating your organs can have a life-saving impact on their recipients. There are pros and cons, but organ donation is one of the most impactful things you can do.
Organ Donation Facts
Successful transplants save cancer patients’ lives, but there are troubling organ donation statistics highlighting how critical donors are for cancer patients.
How many lives are saved by organ donation?
In 2022 the U.S. surpassed a historic milestone with 1 million organ transplants. Though this seems like a turning point in filling the needs of potential recipients patiently waiting for new organs, it just isn’t enough.
How many people are on the organ donor list?
According to the United Network for Organ Sharing (UNOS), there are currently over 100,000 people on the organ donor waiting list for transplants in the United States alone.
An average of 20 people die per day waiting for a transplant, and many more are removed from the waiting list because they become too sick to undergo a transplant.
Why is there an organ shortage crisis?
The shortage of organs is due to several factors, including the relatively small number of individuals who die in a way that allows organ donation and some families’ reluctance to donate their loved one’s organs.
Additionally, some medical conditions and lifestyle choices can make it difficult for individuals to become organ donors.
Increasing the number of organ donors is essential to addressing the organ shortage in the U.S. and saving more lives. Encouraging individuals to register as organ donors, raising awareness about the importance of organ donation, and improving education about the organ donation process are all essential steps that can be taken to address the organ shortage crisis.
Photo by Mikhail Nilov
Reasons to be an organ donor
Becoming an organ donor is a powerful way to give the gift of life and make a meaningful impact on the lives of others.
- Save Lives: People choose to become organ donors to save lives. Donating organs can give someone a second chance at life and improve their quality of life.
- Personal Connection: Others become an organ donor because they knowsomeone who has been affected by organ donation. It may be a family member, friend, or acquaintance who has received a transplant or is waiting for one.
- Altruism: A desire to help others and positively impact society. An organ donation is a selfless act that can make a significant difference in the lives of others.
- Religious Beliefs: Many religions support organ donation as a way of helping others and saving lives. For individuals with strong religious beliefs, becoming an organ donor is an important expression of their faith.
- Legacy: A way to leave a positive legacy and make a lasting contribution to society. Your organs can be used to help others even after your own life has ended.
You may have thought about being an organ donor, but the idea of your body being prodded for parts might seem morbid. Several misconceptions about reasons why you shouldn’t be an organ donor may prevent people from becoming donors.
Photo by Andrea Piacquadio
Common misconceptions about organ donation
- Organs are taken before the person is deceased: You won’t feel a thing. Organ donation can only occur after a person has been declared brain dead by a physician and sometimes after the heart has stopped beating. The medical team follows strict protocols to ensure the donor is deceased before organ removal.
- Organs are sold on the black market: This is illegal and unethical! Organ donation and transplantation are highly regulated through legitimate medical channels. Organs are allocated based on medical needs, not financial status.
- My religion doesn’t allow organ donation: This is not true for most beliefs. In fact, many religions support organ donation as a charitable act that can save lives. It’s a good idea to consult with a religious leader or spiritual advisor to learn more about your specific religious beliefs.
- My body will be disfigured: Not at all. The surgical procedure for organ donation is similar to any other procedure and is performed by a team of medical professionals in a sterile environment.
After an organ donor passes away and their organs are removed for transplantation, the body is treated with great care and respect. Once the organs have been removed, the body is carefully closed, dressed in clothing, and released to the family for funeral arrangements. There will be no visible changes to the body due to organ donation, and an open-casket funeral is still possible.
- I’m too old to be an organ donor: You’re never too old to save a life! No age limit exists. Medical professionals will evaluate the condition of the organs to determine whether they are suitable for transplantation.
If you are already on the organ donation registry, you should know this is one of the most extraordinary humanitarian efforts any individual can participate in. Kudos to you!
If you are still on the fence, it’s completely understandable. Giving your organs to a potential stranger is a big decision for you and your family. But, hopefully, you understand why organ donation is so critical to helping others.
You are donating life. What could be bigger or better?
How to become an organ donor
Becoming an organ donor is a simple process.
- Register: You can register as an organ donor through your state’s donor registry, usually found on your state’s Department of Motor Vehicles (DMV) website. You can also register through national organ donation organizations such as Donate Life America.
- Consent: After registering, let your family and loved ones know you have chosen to become an organ donor. This ensures that your wishes are honored in the event of your death.
- Carry Your Donor Card: Some states provide donor cards that you can carry to indicate your donor status. This can be helpful in an emergency where your driver’s license may not be immediately available.
It’s important to note that you can change your donor status anytime by updating your registration information or informing your family and loved ones.
In addition to organs, donating bone marrow and stem cells can be life-saving for an immunocompromised person.
Need Support?
If you are a family with a new pediatric cancer diagnosis or know of a family in this challenging situation, please Get Help from Here to Serve.
By Sameera Rangwala, M.S., M.P.H
About the Author
Sameera Rangwala spent 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.
Spring, An Inspiring Season
Spring, An Inspiring Season
The embodiment of hope and newness each year
When spring arrives we’ve tipped the balance from longer nights to longer days. Equinox means “equal night” of light and dark (roughly), and through the rest of the season we can benefit — experientially and metaphorically – from more time spent in the light. The major faiths in the world all celebrate during the spring season, taking inspiration from the rebirth we experience all around us. It’s a time of joyous renewal of our spiritual faiths, and a time to gather and celebrate with loved ones.
There’s even some science to the joy of spring. Research suggests that for many people, the extended daylight boosts mood, well-being and energy. Dopamine — a neurotransmitter associated with attention, motivation, pleasure and mood — seems to increase with more exposure to sunlight.
Children seem especially sensitive to the arrival of spring. After a long winter of being indoors, they revel in the splash of spring rains and the feel of more gentle air. Families on a cancer journey can find winter long and challenging – both physically and mentally. While spring does not remove the gargantuan task of caring for a pediatric cancer patient, suggests these four simple steps to embrace spring:
- Lean in to Hope. With tiny seedlings emerging through the dirt, buds gracing trees, and birds returning from their migrations, this season we are surrounded by renewal. These tiny, daily miracles give us reason to hope.
- Clean Out. Parents of pediatric cancer patients don’t have time to dust every shelf, but a family day of simple chores like putting that pile of winter boots away and a symbolic sweeping of dirt out the door might just put a spring in your step!
- Open Up. Finally, we can open those windows and doors and let some fresh air in.
- Get Moving. Whether it’s a picnic, a stroll around the park, or a visit to the hospital garden, moving and being aware of the new scents and colors of a spring day will rejuvenate everyone.
Along with these four simple steps, spring activities are a good opportunity to talk to children about spring, hope and renewal. Here are some simple activities you might enjoy as well:
- Paper flower crowns from The Artful Parent. These paper crowns are easy projects with components that can be found around the house.
- Bird feeders from Made Everyday. This homemade bird feeder has been a staple in the kid’s craft world for years.
- Spring nest easter snack from The Artful Parent. This simple snack is fun for kids to make and a great way for them to use their hands on a tactile project. They are edible too of course!
- Fairy garden from The Spruce. This is a craft that allows kids to personalize and decorate as much or as little as they want.
- Spring tree thumbprint craft from A Dab of Glue Will Do. This is another tactile craft that gives kids the chance to use their hands while creating their masterpiece.
Spring can bring about feelings of hope and positive change, something that many people need after a long, bleak winter. For parents and loved ones of children with cancer, this time of year is an opportunity to reset and analyze what aspects of their journey they have the power to improve upon. It is also a chance to focus on the road ahead and prepare for the inevitable hardships that will arrive, no matter the season. With warmer weather, an array of holidays and more natural sunlight, spring is a brighter time for all.
Here to Serve has served hundreds of families during their cancer journeys by providing non-medical wrap around services. At Here to Serve, our resource referrals can assist 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, sign up here.
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.
References:
Holly Lebowitz Rossi, Guideposts.org
Minority Cancer Awareness Month
Minority Cancer Awareness Month
Is the Battle Tougher for Minority Children Who Get Cancer?
April is National Minority Cancer Awareness Month, and no better time to discuss how cancer disproportionately affects minorities. There are differences in the number of new cancer cases and cancer outcomes. Disparities more often negatively affect racial and ethnic minorities, poor, adolescent, and young adult populations.
What is National Minority Cancer Awareness Month and Who Is Most Affected?
Black, American Indian, and Alaskan Native communities experience the worse cancer health disparities among racial/ethnic groups in the U.S. They share the most significant cancer rates and the most inferior outcomes for each of the most common types of cancer, despite incredible progress in reducing overall deaths from cancer. “Disparities” are differences in the occurrence, frequency, death, and burden of cancer that exist among specific population groups, including racial and ethnic minority groups.
Cancer outcomes are worse in populations who experience health disparities. This is because diseases from their socio-economic condition affect the treatment and outcomes negatively. Obesity, diabetes, and infections (including Covid-19) all disproportionately impact Black communities. These health disparities can make cancer treatment, including surgery, chemotherapy, radiation, more complicated to do and cause more severe side effects.
Clinical Trials
People at or below the poverty level are less likely to enroll in clinical trials offering improved cancer outcomes for cancer treatments. Also, people with low income or insufficient health insurance may not have access to specialist doctors or the genetic tests needed to enroll in clinical trials. However, for minority children, access to clinical trials has been much more accessible than for adults, and for that, we can be thankful. Many resources exist to help families get their child into a clinical trial if they qualify. No longer are financial concerns keeping minority children from these trials if they are eligible. One such organization that helps provides the finances needed for both children and adults is Lazarex Cancer Foundation. This foundation is a great one to support during National Minority Cancer Awareness Month.
Marrow Registry is Inadequate for Minorities
Many child blood cancer patients lose their lives because no matching stem cell or marrow donor is found in the worldwide registry. This is true for both children and adults, even though more than 33 million are registered donors from dozens of countries. The numbers are shocking. 75% of Blacks, 75% of multi-racial, 55% of Latinos and Hispanics, and 60% of Asian Americans do not have a perfectly matched donor in the worldwide registry.
The reason matches are so difficult to find for minority patients is simple: their genetic heritage is underrepresented in the registry, which means people sharing a similar lineage or ethnicity have not joined the registry in sufficient numbers. For example, while more than 12% of the American population is Black, only 4% of Americans on the international registry are Black, and the percentages are similarly out of proportion for others.
Underrepresentation of Minorities
When a population of people is geographically isolated or intermarries within the same group for many generations, naturally occurring Human Leukocyte Antigens (HLA) mutations stay within that group. Today people disperse freely around the world, but you carry the HLA from your ancestors within you, and finding a perfect HLA match means finding another person who shares your ethnicity. Multi-racial/hapa individuals often have rare combinations of antigens in their HLA profiles, making it even more challenging to locate perfect matches.
Find Help as a Parent of a Cancer Child
There are resources and information about cancer disparities and health equity. Tap into national organizations that provide resources and services for specific communities of children (and adults) with cancer. Here to Serve has a database of resources to help. Below are just some resources you can access:
- American Society of Clinical Oncology: Equity and Cancer Care & Research
- Intercultural Cancer Council
- National Cancer Institute: Center to Reduce Cancer Health Disparities
If you or a friend or loved one has had a child recently diagnosed with cancer, please reach out to Here to Serve for help. Just click on the Get Help button. Here to Serve is here to help!
By Katie Quintas and Emily Rogalin
Supporting Siblings of Pediatric Cancer Patients
Supporting Siblings of Pediatric Cancer Patients
Acknowledging Sibling Challenges
Siblings of a cancer patients often find it challenging to navigate the emotional states of family members as well as their own confusion regarding the diagnosis and future of their sibling. In this blog we will talk about some common emotional challenges the child may feel during this time and some suggestions to support them as they move forward to create a new normal.
Anxiety
Depending upon the age of the child, they may not know how to verbalize their anxiety around their sibling’s diagnosis or the uncertainty they sense in the household. Being transparent about cancer and what the diagnosis means for the sick child and the family as a whole, including details about schedule changes and new helpers being introduced to the family routine. Explaining the cancer and treatment on their level helps with them cope with their anxiety. While keeping to a previous routine may not be possible, understanding the changes lessens the anxiety surrounding them. While the family’s life may now be governed by treatments and doctor visits, whatever routine you can establish is extremely helpful for the other children in the family.
Emotions
Just like adults, the reality of a cancer diagnosis sends children’s emotions on a wild ride. Two prominent emotions are guilt and jealousy. If the child does not understand cancer, they may feel they could have prevented it, or feel the unfairness that they are healthy and their sibling is suffering. Their sibling getting enormous amounts of parental attention may cause them to feel jealous. Acknowledging what they are feeling, whatever emotions that may involve, is key to the child feeling validated. If the child thinks that it’s bad or that they will get in trouble for being jealous, angry or frustrated, they may not open up about those emotions. Keeping their feelings inside and feeling as though it’s unsafe to talk about their experience may cause unhealthy coping mechanisms and damage close relationships in the future.
Uncomfortable Situations
Although people mean well in asking after a person who is ill, the constant questions can feel invasive. Adults have coping mechanisms for these situations, but young children are still establishing their boundaries. Having a conversation with the child to understand what makes them uncomfortable and establishing some family ground rules, will demonstrate to the child that you understand their perspective. Parents can help establish these boundaries by speaking with the child’s teachers and caregivers, perhaps with the child in the meeting to give them some autonomy over their environment. The child knowing they can refuse to answer personal family questions, even from their friends, will allow them to feel more comfortable in social situations.
Nurture the Sibling Connection
Helping your healthy child or children spend time with their sibling is another important aspect to maintaining a sense of balance and normalcy within the family. Their sibling has been their playmate and confidant in their life, and they are suddenly separated. Along with their anxiety for their siblings health, they miss the camaraderie. If possible, allow the siblings to hang out together and engage in a typical activity, whether that be sitting outside if the weather is nice, watching a movie or playing a board game. If the children can remember what it was like to spend time together before the cancer diagnosis, it will help ease the transition into this new normal. This time together together is a way to assure both children that, while their lives may have changed, their bond is constant. In addition, there may be an opportunity to meet other children whose siblings have cancer and feel less alone. Although it can be difficult to see a loved one in the hospital, being present does create opportunities that may otherwise not exist.
Recognizing Admirable Qualities
Siblings of pediatric cancer patients often hear their sibling being admired for their bravery and strength. Acknowledging the siblings positive traits and actions will assure them that they, too, are special. Perhaps admiring their patience and kindness, or thanking them for stepping up to assist with household chores. A little “special time” goes a long way, and this does not need to be in the form of a big outing or special adventure. Simple rituals like hot chocolate when you return from the hospital or a silly word game in the car, something that is exclusive for the parent and child, can make a treasured memory during the strange and challenging cancer journey. And while big adventures like the zoo may not be feasible, enlisting a willing volunteer to be a temporary aunt or uncle during this time may take some pressure off of the parents.
While this is an extremely stressful time for you and your family, there are many individuals and organizations whose mission is to assist during this difficult time. If your child, yourself or anyone in the family is struggling with how to cope, please reach out to a licensed professional that can provide counseling and education. There are also support groups that exist for parents of children with cancer. A group or individual setting may help you to feel less alone and better able to manage the challenges that you are facing.
Here to Serve has served hundreds of families during their cancer journeys by providing non-medical wrap around services. At Here to Serve, our resource referrals can assist 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, sign up here.
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.
