May is Brain Cancer and Tumor Awareness Month
May is Brain Cancer and Tumor Awareness Month
Go Gray in May
Brain cancer is a dreaded diagnosis, and for good reason. It feels like a lightning bolt has face-planted you into a cement wall. It is no benign fear for anyone who receives a brain cancer diagnosis, least of which are children or a parent of young children. Hearing about brain cancer feeds most people’s paranoia, and reading about symptoms is almost guaranteed to bring them on! The next severe headache migraine may make you wonder if you have a brain tumor, especially if a child complains of headaches. Brain cancer is a journey with an unknown destination. There are different types of primary brain cancer, and survival rates vary significantly depending on the type of cancer.
Unthinkable Statistics
According to the National Brain Tumor Society, brain tumors and cancers affect Americans from all walks of life. Still, the statistics in young people under the age of 19 are heart-wrenching, and the disease has a tremendous impact on the quality of life for the patient and their families.
- Nearly 700,000 Americans are living with a primary brain tumor.
- Approximately 70% of all brain tumors are benign, and 30% are malignant.
- Over 18,000 people will die from a malignant brain tumor in 2021.
- Brain tumors are the most common solid cancer in people ages 19 and younger in the United States.
- Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents under 19.
- Approximately 31,000 adolescents and young adults are estimated to be living with a brain tumor in the United States.
Primary Brain Cancer Is Rare
A primary malignant brain tumor is a rare type of cancer accounting for only about 1.4% of all new cancer cases in the U.S. The most common brain tumors are known as secondary tumors, meaning they have metastasized or spread to the brain from other parts of the body such as the lungs, breasts, colon, or prostate.
According to the American Cancer Society, brain and spinal cord tumors are “masses of abnormal cells in the brain or spinal cord that have grown out of control.” That is a simplistic explanation of an incredibly diverse and devastating illness affecting a complex area of the body. Brain cancer can take a toll on a person’s speech, vision, hearing, memory, thoughts, and feelings. The essential parts of our life that make us unique and make us who we are as human beings come from the brain.
Benign or Malignant, What’s the Difference?
Both types of tumors can have similar signs and symptoms. A benign tumor may not be cancerous but can be life-threatening by growing in the brain or spinal cord, unlike most benign tumors in other parts of the body. The tumors can press on nearby sections of the brain and cause serious injury. Malignant or cancerous brain and spinal cord tumors can increase and spread to other brain tissue, causing severe brain damage or death. Both types of tumors need treatment to prevent further brain or spinal cord injury.
Patients Struggle from Resource Obscurity and a Lack of Funding
As you sit at your computer or look down at your phone reading this blog post, your brain is actively working, engaging several normal brain functions such as phonemic awareness, visual and auditory processes, and comprehension. All this is taking place while you were not even “thinking” about it. May is Brain Cancer and Tumor Awareness Month. It is a good time to take a few moments to learn and support not only brain cancer research and treatment but those on a journey they never thought they would have to take.
Consider the suffering these debilitating cancer diagnoses inflict on patients and their families. Sadly, the underfunding and invisibility of organizations providing wrap-around support of cancer patients and their families is a genuine concern by nonprofits who are trying to fill that gap. Cancer is a three-legged stool: research, treatment, and journey! Here to Serve is a nonprofit that focuses on “the journey” of cancer patients. Unfortunately, organizations like Here to Serve are very few and languish in obscurity because they are underfunded. Here to Serve provides wrap-around services to cancer patient families providing home help (meals, housecleaning, pet care, etc.), funding, communication, and logistics. Nationwide awareness and funding of the journeys of brain cancer patients need the same intensity and focus as cancer research and treatment.
Great Minds Making Swift Advancements in Brain Cancer Research
As we advance through the 21st century, technology is changing every day. Fortunately, cancer research has benefited from rapid innovation. Research and development in brain cancer and tumor treatments have made tremendous leaps in the past decade. Doctors at the Mayo Clinic are developing state-of-the-art 3D printing to create models of complex brain tumors using high-resolution magnetic resonance imaging (MRI) before surgery. Stanford University is fostering advanced treatment options like noninvasive CyberKnife radiation. But there is still more work to be done to prevent the unbearable tragedy of brain cancer, especially in children.
Being Aware is How We Care
Many organizations that research and treat brain cancers and tumors highlight their cause during Brain Cancer Awareness Month. Here to Serve often does not get the spotlight in these efforts, but we are vocal, nonetheless! The hard work and dedication to spread brain cancer awareness and highlight resources continue throughout the year. At Here to Serve, we understand the importance of supporting those who are fighting this unthinkable disease; those on a journey they never imagined they would have to take. Please reach out to us if you know a child diagnosed with brain cancer or any other type of pediatric cancer. We are aware of the needs of a family dealing with a cancer diagnosis. Our team can provide guidance and tangible, practical support. We assist in everyday tasks while giving hope in a time of uncertainty. Reach out for our help when you are ready. We will be Here to Serve!
About The Author
Chris Smith is a Here to Serve volunteer from the San Francisco Bay area who himself is a cancer survivor. He uses his professional experience as a technical writer to give back and provide clear and meaningful information for families with a child battling cancer.
All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.
Every Day Should Be Nurses Day! National Nurses Week
Every Day Should Be Nurses Day!
Nurses Week 2021!
May 6 through May 12, 2021, is National Nurses Week, with May 12 being International Nurses Day. How vital are nurses to us, our health care system, and hospitals? Your hospital stay or that of a loved one can be made or broken by the nursing care you receive. A caring and devoted nurse is worth his/her weight in gold. This is especially true for nurses of pediatric cancer patients and their parents. A caring nurse is the eyes and ears of your doctor. They often catch things before the doctor does. A dedicated and attentive nurse is a gift from God. Nursing can be a heartbreaking job day in and day out. Some may not realize the emotional toll it can take when caring for patients, especially critically ill children.
Celebrate a Nurse You Know
Caregivers of children with cancer know all too well the value of the nursing staff who help their children manage toxic cancer treatments. The challenge of nursing has been made more complicated with the Covid-19 pandemic. Many nurses experience burnout. So take a moment to recognize the immeasurable value a nurse has on the lives of others. Show them kindness, respect, and compassion. Let them know you appreciate them. You never know when you may need a gifted nurse to bring you or a family member through a medical crisis.
Florence Nightingale, the Catalyst for Professional Nursing
National Nurses Week was established in 1982 by then-President Ronald Reagan in honor of the pioneering work of nurse Florence Nightingale. The annual International Nurses Day is celebrated on her birthday, May 12. Florence Nightingale (1820-1910) was born in Florence, no doubt attributing to her name; her parents were from England, and she was born while they were traveling. Florence Nightingale was a social reformer and statistician best known as the founder of modern nursing.
Her experiences as a nurse during the Crimean War were foundational in her view of the need for sanitation. In 1860, she laid the foundation for professional nursing by helping to establish the nursing school at St Thomas’ Hospital in London, which is now part of King’s College London. In recognition of her pioneering work in nursing, the Nightingale Pledge, taken by new nurses, was named in her honor. So, too, is the Florence Nightingale Medal, the highest international distinction a nurse can achieve. Her social reforms included improving healthcare for all sections of British society, advocating better hunger relief in India, helping to abolish prostitution laws that were harsh for women, and expanding female participation in the workforce.
Celebrating Julie Walden, ICU R.N.
Julie Walden, R.N. is a retired nurse from UCLA where she worked for over 25 years. She worked as a bedside nurse helping ICU patients. She was also a preceptor helping train young nurses during that time. Leaning on the challenges she faced as a young nurse, Julie’s compassion spilled over into her training style of younger nurses. Julie has a charming and calm demeanor; she went into nursing to help others, a trait intrinsic to her nature since she was very young. Coming out of retirement to work in home health care has been brought back the satisfaction she missed from direct patient care. She has recently decided to retire once more to take care of her mother, who now needs full-time care.
Some of the challenges she shared were the emotional toll of feeling compassion for every patient. She learned to compartmentalize and keep her personal life balanced with her work life. As the years went on, lifting heavy patients in ICU began to take its toll on her body. She decided to retire to enjoy travel, gardening, sewing, and creating mosaics. When asked if she would do it all over again, it was a resounding “yes!” When asked how we could best show our appreciation to nurses, she said, “If patients would just wear their masks, get vaccinated, not be mean to nurses, and thank them, they are doing what they need to do.”
Consider What Nurses Endure
During National Nurses Week, take a moment to reflect on what nurses endure to help others during our most significant time of need. Return the compassion they provide to so many and maintain respectfulness and understanding. Here to Serve is dedicated to providing respectful, compassionate care for families of children with pediatric cancer. Please reach out if you need help or know of someone who needs help. If you wish to help with a donation or volunteering, please click here.
By Amanda Enciso
What’s Mother’s Day Like for Moms of Childhood Cancer Kids?
What's Mother's Day Like for Moms of Childhood Cancer Kids?
Mother's Day 2021
When Mother’s Day arrives, May grey will have special meaning to mothers who have children battling cancer. These moms will grieve their son or daughter’s loss of health and a normal childhood. Even more, so is the grief of a mom who loses her child to cancer. Consumed with thoughts of what could have been. Even the most resilient mother grapples with a heart stitched together with glue and string. Mothers who lose their children to cancer hold their hands for a short while, but they hold their hearts forever. These mothers’ new normal is filled with the pain of what could have been. Questions like “how many children do you have?” can be devastating to these parents, and that is just the beginning.
Moms With a Child Battling Cancer Are Superheroes
While many mothers celebrate brunch with their family, enjoy fresh flowers, outdoor activities, longer days, and the adoration of their children, cancer moms remain at their child’s bedside and pray for a miracle. Cancer moms don’t sleep; they just worry with their eyes closed. Mothers who have lost their child to cancer can feel trapped in the darkness of their own grief and thoughts. Hardly in a mood to celebrate a day that has robbed them of being a mother to a child who is no longer here.
If you are a mom, you are a superhero. If you are a mother who has children battling cancer, you defined superhero by having greater strength than natural laws! It is fitting to have a day once a year to celebrate mothers. A mother who journeys a child through cancer reveals the purest kind of love.
So, this Mother’s Day challenge yourself to honor mothers who have children battling cancer or who lost a child to cancer with a special kind of love. Send flowers, or a card with words of encouragement and love. You have no idea what this will do for her emotional health! She will appreciate being remembered not only as a mother but one who answered the highest calling of motherhood, caring for a critically ill child. The photos you see are Here to Serve moms who have loved and cared for their child through cancer, some to the gates of heaven. At Here to Serve, we celebrate these incredible moms and ask that you consider celebrating them and others too.
Celebrating Your Mom on Mother’s Day
Anyone celebrating their mom on Mother’s Day, show her extra love and appreciation for everything she does for you. Take a look around and see what little things will make your mom feel cherished and celebrate her. Find a way so she knows you took the time to look, listen and see what makes her feel special and loved. Heartfelt gifts are the best! Surprise her and take care of a couple of the little tasks she has been asking you to do around the house. Little things go a long way to brighten her day! There is nothing like special drawings, poems, or handwritten cards that can make a mom feel appreciated and special. Things like breakfast in bed and extra helping hands around the house can significantly impact mom. A gift of something you know she will love can also show your love and appreciation.
Take a moment and ask yourself how you can help reduce your mom’s stress. Perhaps make a booklet of redeemable coupons for tasks you will do, such as washing the dishes, preparing a meal, providing a foot or neck massage, and time out for a nice long bath. Sometimes moms are so overwhelmed with all the tasks they have they do not make time for themselves.
Why not help mom with opportunities to make time for herself? Not only is this good for her overall health, but we also have a vested interest in our moms living long healthy lives. Let her have a real day off! Spend some extra quality time together without electronic devices and listen to each other. Reminisce together about special times you spent together. If you have small children have them share why they love mom and what mom does for them and produce a video and share it with her. There are many creative ways to share a video that will make her feel special. Even just spending time with her can brighten her day.
Bring Relief to a Pediatric Cancer Mom Through Here to Serve
At Here to Serve, we strive to provide the little things that significantly impact mothers who have children battling cancer struggling with day-to-day life while caring for their child. Four out of the five children in these photos with their moms were lost to cancer. Here to Serve came alongside these families to bless them with the support they needed. If you are inspired to help families affected by childhood cancer, consider donating your time, talent, or treasure to Here to Serve, allowing us to provide resources to all the moms out there caring for children with cancer.
By Amanda Enciso
You don’t give to us, you give through us. Your donation goes a long way!
How to Encourage Children with Cancer to Read
Reading and Healing
How to Encourage Children with Cancer to Read
A Book Can Be the Best Medicine
Doctor office visits and hospital stays can be traumatic for a child of any age, nevermind a child battling cancer. Having a good book to read can help cancer kids cope with their illness. Books are a great way to escape from the sad and scary situation they are living with daily. We all know that a good story cannot cure cancer, but the power of imagination can aid in the healing process. Whether you are reading to your child or they are alone in their room, the joy of reading can help alter their mental attitude and transform how they manage their treatment. So, it’s important to encourage children with cancer to read, despite their heartbreaking and challenging circumstances.
Encourage Children with Cancer to Read for Their Development
Before your child’s cancer diagnosis, they were going through critical development stages, and their educational development was a part of this phase. Even as your child battles cancer, it is still vital to continue their learning development and that includes reading. And if they are not able to attend school, they can still spend quality time reading. Make it an experience your child looks forward to and engage with them in the book. As you read it to them, ask about the characters and what is happening. Show interest in the plot and before you know it, they will ask to read more!
Reading to Reduce Stress
In research conducted by the Journal of College Teaching and Learning, a group of academics studied the effects of reading, yoga, and humor on students’ stress levels in challenging health science programs in American universities. The results discovered that just 30 minutes of reading lowered blood pressure, heart rates, and stress levels of the students, just as successfully as yoga or humor. Now a child with cancer is not the same as a college student who is becoming a scientist. Yet, an important takeaway is that if your child is going through cancer treatment, they may have limited time or energy in their day for structured exercise or other activities to help reduce anxiety. The simple act of reading can be an easy way to deal with the stressful situation they are going through.
Reading for a Good Night’s Rest
Encourage children with cancer to read by selecting a book they find interesting, and it’s essential to read a physical book and not an eBook or one on a screen. Doctors at the Mayo Clinic recommend that reading be part of your child’s sleep routine. Reading a printed book can aid with a good night’s sleep since light discharged from an electronic device can keep your child awake and lead to other unwanted health outcomes, such as trouble sleeping or lack of morning alertness. Mayo Clinic research also found that too much screen time can result in eye discomfort or possible vision issues.
Books to Help Your Child Understand Their Illness
The book your child selects should inspire them to read, so depending on their age, if they want to read a picture book or graphic novel, go ahead and let them pick a book that fills them with joy. There are also numerous books available to learn more about their illness in creative and beautiful ways. If you are looking at books in the bookstore or online, suggesting some of the following books to your child might also give them different reading options they did not know about.
How Do You Care for a Very Sick Bear? (ages: 2-6)
As a survivor of leukemia herself, Actress Vanessa Bayer writes to explain what it is like to experience cancer treatment. A good book parents can read to their young child.
Amazing Annabelle: A Story for Kids Fighting Cancer (ages: 6-8)
In the story of Amazing Annabelle, the heroine helps kids diagnosed with cancer learn what to expect while going through treatment. An incredible story written by a mother whose young daughter was diagnosed with cancer.
Hundred Percent Chance: A Memoir (ages: teens)
A gripping memoir written by a young college student who was diagnosed with Acute Myeloid Leukemia. The author’s gut-wrenching journey will inspire and remind the reader to make the most of each day.
Here to Advocate, Here to Serve
When your child is diagnosed with cancer, your life will be turned upside-down. You may feel helpless and alone, but please know you have a support system. If you know a child who has recently been diagnosed with cancer, please let their family know about Here to Serve. Our volunteers assist with home needs, funds, resources, guidance, and support for parents on a journey they never imagined they would have to take with their child.
By Chris Smith
About The Author
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.
Celebrate 2021 National Volunteer Week
Celebrate 2021 National Volunteer Week
April 18-24
Out of the darkness, we enter the light. As our country emerges from a nightmarish year of the Covid pandemic, Spring emerges. The United States and the world see a resurgence of Covid-19 vaccines make it into arms. Many refuse to reflect on the carnage of the past 13 months, never mind celebrate anything good that came from it. However, there are positives to celebrate. This was a banner year for volunteers giving their time and talent. Many who were unemployed saw the opportunity to give back. The third week of April is National Volunteer Week, and it is worth celebrating all the volunteers who stepped up these past twelve months!
Millions are Here to Help
A Presidential Proclamation in 1974 established National Volunteer Week as a way to recognize those that devote their time and energy to causes they care about deeply. A 2018 study commissioned by the federal agency Corporation for National and Community Service (CNCS) found that over 77 million adults volunteered through various organizations. This work equates to nearly 6.9 billion volunteer hours. The CNCS study also found that millions of others engage in “informal volunteering” helping friends and family in need.
At Here to Serve, we honor the volunteers who worked for our mission to support children with cancer and their families, especially this past year. In the decade since Katie Quintas and her husband Silvio formed the organization, over 2500 people have volunteered to help our goal! This year we had more organizational volunteers than all previous nine years. We are grateful for volunteers’ hearts to help others and their generous gift of time and talent.
Volunteering in a Time of Crisis
In 2020, while most of the world was in quarantine, many nonprofit organizations and hospitals had to limit the number of volunteers or temporarily suspend volunteer operations due to safety concerns. However, volunteers found new ways to help, many under the guise of a mask and PE gear. Volunteer strength was there, and it continues. At its core, we are a nation that comes together during a crisis. This year some of our prohibited volunteer activities will come back, including visiting sick children, making meals for others, bringing respite to families, and even climbing a steep hillside looking for a missing person. The common thread is the desire to help others in need.
Benefits of Volunteering
There is no doubt that volunteers make a difference in the lives of those they assist, but a study conducted by the Mayo Clinic found that volunteering can also benefit the health of the helper. Researchers found the following positive benefits of volunteering:
- Decreases the risk of depression.
- Provides a sense of purpose and ability to fine-tune and learn new skills.
- Helps people stay physically and mentally active.
- Aids in the reduction of stress
- Opportunity to meet new people and develop friendships.
Volunteer Opportunities at Here to Serve
As the days get longer and the sun shines brighter, springtime offers a sense of rejuvenation. We emerge from the pandemic and find there are more things to be optimistic about in the world. Hope can motivate us to be more active. There are countless ways to help those in need. At Here to Serve, we know that pediatric cancer never takes a break. The call for volunteers occurs every day of the year. As we stop to take a moment to honor those who selflessly help our families in crisis and our organization thrive, we also want to share a list of our current volunteer opportunities. Your talent and experience can support our organization and aid in providing free services to our families. This assistance can ease parents’ burden, so their complete focus is helping fight their child’s cancer.
By Chris Smith
About The Author
Chris Smith is a Here to Serve volunteer from the San Francisco Bay area who himself is a cancer survivor. He uses his professional experience as a technical writer to give back and provide clear and meaningful information for families with a child battling cancer.
All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.
April Is National Donate Life Month
April Is National Donate Life Month
April Is National Donate Life Month
Donate Life awareness is usually focused on organ donation. However, Donate Life also includes bone marrow or stem cells for a child with cancer. What a precious gift we can give to save another’s life! I can’t think of a better gift than to give a child a chance to live a long and full life.
Cancer is #2 Killer of Kids; Blood Cancer Is #1 Childhood Cancer!
Sadly, cancer can take the life of a precious child. It may surprise you, after accidents, cancer is the second leading cause of death in children. Over 11,000 children received a cancer diagnosis in 2020 (American Cancer Society). The single most cancer diagnosed in children is Leukemia, a blood cancer. Children diagnosed with Leukemia often benefit from bone marrow or stem cell transplants. It is easy to get on the registry to allow yourself to be a match to someone in need. A recent study has been published demonstrating that children and young adults who receive CAR T-cell therapy for the most common childhood cancer – acute lymphoblastic Leukemia – suffer remarkably fewer relapses and are far more likely to survive if their treatment is paired with a subsequent stem cell transplant, a new study finds (1). In children up to age 14, most lymphomas are non-Hodgkin lymphomas, with about 500 of these cancers diagnosed in the United States each year. If all children and teens up to age 19 are included, the numbers of Hodgkin and non-Hodgkin lymphomas (NHL) are about equal. There are about 800 cases of NHL diagnosed each year, according to the American Cancer Society.
Bone Marrow and Stem Cell Registry
BetheMatch.org helps maintain a registry of potential donors who match a recipient in need of a life-saving cure for their cancer when traditional methods fail. A cheek swab is all that is required to see if you are a match to someone who is in need. This registry is checked for Human Leukocyte Antigens (HLA) matching to patients in need of a new immune system. HLA matching is used to match patients with donors. If two people share the same HLA type, they are considered a ‘match.’ It’s much more complicated than blood typing. It is vital for individuals of mixed ethnic groups who have fewer options to find a donor match to consider joining the registry.
Umbilical Cord Registry
Did you know you can also donate cord blood at Be The Match® partners with a network of public cord blood banks that collect and store cord blood units? The umbilical cord at birth can be stored and used later to save a life. There is life after transplant. A new immune system can cure certain lymphomas. With the increase in follicular lymphoma, there is growing concern about the link to pesticides known for many years to have causation to follicular non-Hodgkin’s Lymphoma, which is not usually curable. The only option for cure is a bone marrow transplant once all other treatment plans fail.
I Am Cured Because There Was a Match on the Registry
Please consider getting on the registry to see if you may be a match and save a life. There is no obligation to do so, but to give another person the chance to continue their life is incalculable. I had non-Hodgkin’s Lymphoma for ten years, going through countless chemo regimens until it transformed into a very aggressive type of cancer. BetheMatch.org helped find me a match on the registry. It has been six years since my stem cell transplant from a generous young man from Germany, and I am now cured of cancer. No words can express my deepest gratitude for his gift. I was able to see my youngest daughter graduate high school and be there to support the lovely young woman she has become. I also have two other daughters who are grateful their mother is still with them. At Here to Serve, we want to help families going through the challenges of cancer, and what better way to help families than donate life-saving white cells so they can remain together as a family. Please help us help families in need by considering getting on the registry to see if you may be a match to help save lives. We are Here to Serve. Please let families you know who are struggling with childhood cancer get the resources they need. Or perhaps you would prefer to volunteer or donate resources. We are here to help make lives better!
1) Shah, Nirali N., et al. “Long-Term Follow-Up of CD19-CAR T-Cell Therapy in Children and Young Adults With B-ALL.” Journal of Clinical Oncology (2021): JCO-20.
By Amanda Enciso
National Minority Cancer Awareness Month: Is the Battle Tougher for Minority Kids?
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
10 Fun Activities for Kids with Cancer
Kids with pediatric cancer can quickly become tired of repeating the same activities in the same surroundings. It can feel like a daunting task to keep your child entertained, but discovering new and enjoyable activities is crucial for both you and your child. Give these fun activity ideas for kids with cancer a try!
Entertaining Activities for Kids with Cancer
- Arts and crafts: Painting, drawing, and other artistic activities are therapeutic outlets. Art allows children to tap into their imagination and channel their feelings into something tangible, which can be both empowering and healing during their challenging cancer journey.
- Music therapy: Listening to music, singing, or playing an instrument can have a positive impact on children with cancer. Music therapy serves as a form of self-expression and provides an uplifting source of entertainment while going through cancer treatment.
- Pet therapy: Spending time with therapy animals can help children feel more relaxed, reduce anxiety, and provide comfort. Playing with therapy dogs, or getting one of your own, can help your child’s mental health because of their new best friend.
- Games: Playing with toys, board games, cards, and other indoor activities can entertain pediatric cancer patients and help them socialize. Teaching them card games has the added benefit of helping pass the time during treatment.
- Storytelling: Reading books and verbal storytelling can be a soothing and enjoyable way to help children with cancer spend their time while stimulating their mind. This calming influence is particularly beneficial for children undergoing cancer treatment. Whether the stories are read or told aloud, this activity can help the child relax and feel comforted amidst their challenging circumstances.
- Nature walks: Spending time outdoors can help children feel more connected to nature. Going on walks outside and has a calming effect and gets your child with cancer much needed sunlight outside the fluorescent hospital lighting.
- Yoga: Practicing yoga can relax children with cancer, reduce stress and anxiety, and improve their overall mental and physical well-being. Incorporating yoga into your child’s routine can help them feel more relaxed and grounded while staying in shape during treatment.
- Cooking or baking: Cooking dinner and sharing meals with family and friends can provide a fun and enjoyable activity for children undergoing cancer treatment while getting them essential nutrients to keep fighting. Plus, it gives you a chance to pass on your favorite family recipe!
- Movie nights: Watching movies in the company of friends and family can help lift the spirits of a child undergoing cancer treatment when they’re feeling down. Laughter is the best medicine so try picking a lighthearted comedy to get your child to laugh themselves out of a bad mood. Movies can help your child relax and enjoy peaceful quality time with loved ones.
- Sports: Playing sports can be beneficial for children with cancer, because it helps maintain both their physical and mental well-being. Playing sports offers a sense of normalcy and social connection with friends. When children with cancer play sports as part of a team, it can serve as a reminder of the joys of life beyond the hospital walls. It provides an opportunity for children with cancer to have fun and live life to the fullest.
Pediatric cancer is challenging for both the patient and their family. Finding activities to entertain your child can help them cope with the difficult times and continue creating happy memories.
It’s important to remember that every child is unique, and what works for one child may not work for another. Ultimately, the most important thing is to provide your child with love, support, and opportunities for fun and play, even during tough times. With creativity and a positive attitude, you can help your child find joy and happiness during their cancer journey.
“I’m Here Too!” Help for Siblings of Children with Cancer
As a child, your family is your world; they provide comfort, security, and a daily routine. What if one day, that emotional protection was torn away without warning? What would you do? How would you cope? When a cancer diagnosis occurs in a family with multiple children, the focus will shift immediately to the sick child. Still, cancer touches the entire family and can profoundly affect the siblings of the patient.
Cancer Touches Many Lives
According to a study from Stanford Health, each year, roughly 15,000 children are diagnosed with cancer. That is over 15,000 families yearly who are deeply affected by this devastating disease. About a third of these families report that they spend 40 hours a week on cancer care. That will alter family dynamics. Parents will have so many burdens during this time. Stress levels increase, everyday routines slip through the cracks as cancer treatments and hospital visits become the new reality. It’s important to remember the siblings. While their physical health may thankfully be intact, they might silently fight mental and emotional issues that go unnoticed.
The siblings of children with cancer will need support too. There will be so many emotions running through them, from sadness to anger and resentment. Most importantly, your children need to know they are loved unconditionally and that you understand the fears and emotions that are overwhelming them during this time. Please encourage them to share their feelings and not keep them bottled up inside.
Explain What Is Happening
All of your children will be looking to you for guidance. While your child with cancer will have a structured care plan in place and a health care team working to assist, you must take this time to also explain to your other children what is happening. As a parent, everything you experience will be even more traumatic for your children, who are still developing emotionally. Your children may feel scared and confused. Each child will process the news differently, be mindful of their age and maturity level when explaining cancer, and what to expect.
Infants to Toddlers (birth-3 years)
Explaining cancer to an infant will be impossible, but it is vital to be in your baby’s life as much as possible during these formative years. While away from home, check in with your young child via video chat or phone so that they can hear and see you. Remind your child that you will see them soon and when you do, hug and cuddle them and let them know how much you love them. Developmental milestones will fill your child’s life during this phase, from learning to walk to potty training. It is crucial to have as much of a set schedule as possible while working with your child on these monumental tasks.
Pre-Schoolers (4-5 years)
Provide a simple description about the cancer diagnosis, explain to your young child that their brother or sister is not feeling well and that doctors and nurses will help them feel better. Let them know that they did nothing to cause the cancer. Young children can pick up on the stress their family is going through, so your young child might begin to show signs of regression. Having accidents even after they have been toilet trained and increasing temper tantrums are not uncommon responses. Reach out to your child’s care team. They may have behavioral therapy resources available to help your other children.
School-Age Children (6-12 years)
As your child develops, they will have the mental capacity to understand and process more challenging news. Answer all the questions they have about cancer with honesty. The American Childhood Cancer Organization publishes Oliver’s Story, which helps answer many of the questions they might have about the disease. Give them a sense of importance by letting them help their sibling. Suggest they write or call if they cannot be with them during treatment. Have them create an art project or make a funny video that they can send to their brother or sister. Allow them to enjoy their daily activities, and tell them it’s OK to have fun even when their sibling is sick. Reassure that your family will be OK during this uncertainty.
The internet can be a useful tool in assisting the siblings of cancer patients. One excellent resource is SuperSibs from the organization Alex’s Lemonade Stand Foundation. This website is specifically designed to offer support to brothers and sisters and provides an abundance of guidance for school-age children.
Teenagers (13-18 years)
As your child develops into a teenager, they will have the maturity level to process complex information even more. If possible, allow them to ask their questions to the cancer care team. Research to see if the hospital has support groups for siblings. Ask your teen to help out a little more at home, but let them focus on academic achievements and other extracurricular activities so that they still have a sense of normalcy in their daily life. Do be sure to monitor your older child’s behavior and look for any negative changes and seek professional guidance for additional support.
The National Cancer Institute provides a free downloadable booklet for teenagers who have a sibling with cancer. The information includes advice to teens from their peers who have experienced the same situation of having a brother or sister with cancer.
Reach Out for Assistance
The cancer your child is facing will have a ripple effect on your entire family. You will find the strength you never thought you had, but remember that you cannot get through this ordeal alone. Your young cancer patient and their siblings depend on you for guidance, so reach out to your support system for assistance. It will be challenging to keep life as “normal” as possible, but with help from family and friends, you can make things easier for your child or children who do not have cancer. Try to make their daily routines consistent as they were before the diagnosis. Make special one-on-one time for your other children, even if it’s just a short walk around the block or a 5-minute conversation at the kitchen table.
Here to Serve Can Help Your Entire Family
Taking moments to bring normalcy back into your life is one of the ways Here to Serve helps you and your children. Our Family Care Coordinators will take the burden off of parents and guardians, so the focus is only on your children’s needs. Let us provide services to you, such as meals, financial resources, housekeeping, running errands, or grocery shopping. Freeing up your schedule will help build special moments with all of your children.
By Chris Smith
Disposal of Unused Medications After Cancer
You are on the other side of your child’s cancer, from cancer fighter to cancer survivor! You are cautiously elated cancer will not own each day from now on and look forward to getting life back to “normal.” You no longer want your home to resemble a drugstore with cabinets full of unused cancer pills, syringes, and other items that helped save your child’s life. You want them thrown away…far away! But how do you do that? Drugs as potent as cancer drugs should not find their way into our oceans.
Don’t Flush Drugs!
So, what do you do with all those medications? Your doctors and care team order the prescriptions, but have they told you how to discard them? No, they don’t! Flushing pills down the toilet can harm the environment once they get in the water supply and many of these drugs are toxic or contain opioids. It is vital to dispose of them properly, so they do not pose a risk to you or other members of your family.
Options for Disposing Cancer Drugs
The U.S. Food and Drug Administration (FDA) provides helpful information about how to dispose of certain medication types. You can also consult your child’s care team and ask if they will take the unused medication from you and dispose of them properly; some hospitals will provide this service while many do not. Do not assume they have resources available to help. There are options available for disposal, but the key is finding an easily accessible location. The U.S. Drug Enforcement Administration (DEA) also sponsors a National Prescription Drug Take Back Day twice a year in April and October. Often, this does not coincide with your timing to rid your home of these drugs.
Recently, some nationwide pharmacies have begun to provide kiosks for medication drop-off in specified locations around the country. Both CVS and Walgreens provide this service, even for medications not purchased at those locations. The following websites offer search locators to find drop-off sites in your area. Enter your state, city, or zip code to see a list of disposal points. Most sites are within pharmacies or supermarkets.
Drop-off Locations for Unused Drugs and Medical Supplies
Department of Justice (DOJ) and DEA
Webpage: https://apps2.deadiversion.usdoj.gov/pubdispsearch/spring/main?execution=e5s1
This joint task force is headed by the DEA to collect unwanted medications during the National Prescription Drug Take Back Day and beyond. The site provides a list of controlled substance public disposal locations.
National Association of Boards of Pharmacy (NABP)
Webpage: https://safe.pharmacy/drug-disposal/
A nonprofit organization that works with state pharmacy boards to protect public health. They provide a drug disposal locator to find disposal boxes in your area.
Dispose of My Meds
Webpage: http://disposemymeds.org/medicine-disposal-locator/
This organization provides an online resource to find medication disposal programs at independent community pharmacies.
Drop-Off Sites Have Restrictions
It is essential to consider that not all items will be accepted at the drop-off locations. Please check with the pharmacy or store before dropping off. Remember to remove personal identification and prescription numbers from the bottle, either by covering the information with a marker or peeling the label off the container.
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Since not all pharmacies have a drop-off location, your pharmacist may offer a product called DisposeRx. This product is environmentally friendly and can be used at home to prepare unused medication for disposal. The DisposeRx packets “contain patented and proprietary solidifying materials that provide a safe solution for the disposal of unused or expired medications. When water and the DisposeRx powder are added to drugs in the prescription vial and shaken, the drugs are dissolved and then chemically and physically sequestered in a viscous polymer gel.” You can place the packet in your trash can.
No Drop-Off Locations Near You? Other Disposal Options
If no drop-off locations are near your home, you may be able to dispose of the medication in your household trash, with some added precautions.
The FDA recommends the following steps before disposal:
- Remove the medication from their original containers and mix them with used coffee grounds or dirt. This process makes the drugs less desirable to children or pets looking through the trash.
- Place the mixture in a sealable container, such as a storage bag or empty can. Doing this will prevent anything from leaking.
- Throw the container into the garbage can.
- Remove any personal information on the original medication bottles and containers and discard them in the trash or recycle bin.
Disposal of Needles and Syringes
Many children with cancer are not only ingesting medicine in pill or liquid forms, but also using needles and syringes (sharps) to administer intravenous medications. Disposal of sharps can be challenging because guidelines and programs vary depending on location and local laws. Contact your area health department or garbage removal service for specific instructions. There will often be a dropbox or collection site at hospitals, pharmacies (separate from medication disposal), and fire or police stations. Public household hazardous waste collection sites may also have special sharps containers used for removal.
Once you have a disposal plan in place, have your child help dump the medicines as an excellent way for them to feel empowered and see that the treatment process has ended, and they can get back to being a kid.
Here to Serve is ready to help you and your child throughout their cancer treatment. Our Family Care Coordinators will provide valuable resources and guidance throughout the entire journey. If you or someone you know has a child who was recently diagnosed with cancer, have them contact Here to Serve for help with home needs, finances, meals, laundry, little-known resources, housekeeping and childcare. Click here to get the help needed.
By Chris Smith
