Gold Ribbon Hero: Naomi

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Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine. “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

Follow Naomi’s story here: https://www.facebook.com/naomisfight/

To learn more about childhood cancer visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/

To donate to help kids with cancer: https://www.acco.org/donate/

Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.

Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.

Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.” The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.

Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.

Grace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.

According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”

Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys talking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!

*Special thanks to Barbara Zobian and the Candlelighters NYC*

Returning To School

For most children, going to school forms the backbone of their daily routine: normal, everyday activities like catching the bus, greeting their friends, completing in-school activities, and doing nightly homework are so regular that most of us don’t even think about them. For a family coping with a diagnosis of cancer, handling the daily routine of school can seem like just one more insurmountable challenge. Yet for school-age children, and especially middle- and high-school children, taking the time to think through how to approach school-related issues both during–and after–treatment will play a critical role in ensuring your child’s academic success once treatment is complete.

Whether your child can go to school intermittently during treatment or whether treatment has required a long absence from school, returning to school can be emotionally challenging for many parents, who face serious concerns about the potential for illness, whether their child has the physical or emotional stamina to cope with a long school day, and whether they will face teasing from uninformed peers. Yet at the same time, maintaining a regular school-related routine as much as possible can offer your child, and indeed your family, emotional stability and regularity during a difficult time, and will help reassure your child that they have a future that is bright and strong.

Communication is the key to your child’s educational success

Although at times dealing with school-related issues can seem like just one more “to do” on your growing list, opening an early dialogue with the educators in your child’s life will help ensure your child’s educational success both during and after treatment. The first step is alerting the school about your child’s diagnosis and treatment plan, the expected duration of the treatment, and the extent to which he or she will be absent. Notifying the principal, your child’s teacher(s), and the school counselor quickly will not only keep them informed of expected absences, it will also enable them to work with you to ensure that your child does not fall behind academically during treatment and keep the school informed about potential limitations that treatment places on their ability to complete certain types of activities or work while in school.

Of course, for many parents, ensuring that your child will not “fall behind” will be a priority. Helping your child stay up-to-date on school work will require that he or she complete assignments while at home or in the hospital. Your school should be able to provide lesson plans and assignments for completion, and may even be able to offer academic assistance in the form of tutoring for older children with more complicated workloads. Many hospitals now also offer academic support for children struggling to complete assignments while in extended hospital stays. By supporting your child and encouraging them to stay on top of their school work as much as treatment allows, you are offering him or her the best possible chance to return to school as smoothly and seamlessly as possible.

Perhaps more importantly, however, maintaining excellent communication with your child’s school will activate additional resources that may be available to help you and your child as they balance the difficult bridge between school and treatment. Most critically, of course, is ensuring that your child receives academic support, including additional assistance if necessary, to stay as close as possible to grade level. However, schools also offer emotional support as well; the school counselor can help your child cope with the emotional stresses he or she is facing. And last, but not least, the school can help guide and manage social interactions as well, working with other students to help them understand what your child is going through and ensuring that your child receives support and friendship from his or her peers as well as from school staff.

For additional information on coping with school-related issues and establishing communication with the educators in your child’s life, we encourage you to obtain a copy of Educating the Child with Cancer: A Guide for Parents and Teachers, 2nd Edition, edited by the American Childhood Cancer Foundation’s own Ruth Hoffman, and available through the ACCO (www.acco.org).

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Late Effects of Cancer Treatment

When your child has just been diagnosed with cancer, your immediate focus is helping your child receive whatever treatment he or she needs to give him or her the greatest possible chance of long-term survival. Unfortunately, many treatments available today for childhood cancer continue to rely on protocols that have proven successful in treating adult cancers, but which can prove highly toxic for the small, still developing bodies of children. Therefore, when facing a treatment protocol, it is critical for parents to be cognizant of both the short- and long-term side effects of that treatment, and the potential for so-called “late term effects” that may impact your child for the rest of his or her life.

What are “late term effects”?

The good news is that there have been tremendous advancements in the treatment procedures for many forms of childhood cancer, and five-year survival rates for some types of cancer have risen dramatically in recent years. However, both chemotherapy and radiation therapy, the two most common forms of treatment, involve intensive levels of both medication and energy that can target healthy cells in addition to killing cancerous cells. Unfortunately, these treatments may, and often do, cause severe health-related problems later on. These are called “late term effects”. While helping your child cope with the short-term and often extremely difficult side effects during or immediately after treatment often takes first priority, it is important to be aware of the types of health problems that may not develop for months or even years. And as the survival rate continues to improve, but treatment still relies on smaller dosages of adult protocols, more and more children will suffer from “late term effects” throughout the remainder of their lives.

Treating childhood cancer requires an extremely specialized approach from a qualified team of experts, but continuing specialized care well beyond the original treatment to anticipate and mitigate any late effects is equally important. Late term effects can impact multiple internal structures or organs, and can range from very mild to extremely severe. Doctors should insist upon cautious and active follow-ups after the completion of cancer treatment so that they can watch out for and treat late effects as quickly as possible. The schedule for follow-up will be dependent on several factors like the type of treatment used, the form of cancer the child had been diagnosed with, and the risks associated with such treatments.

Which type of patients are at a greater risk?

Each child who is diagnosed with cancer gets a unique cancer treatment based on their anatomy, medical history, and type and stage of the disease; in fact, childhood cancer requires a significantly more individualized and specialized approach than adult cancers. In most cases, late effects will be as unique as the cancer and form of treatment. While the risk of late term effects is difficult to predict, some of the other factors that may affect the risk for late effects are:

Overall health condition of the child before the cancer.
The age of the child when treatment was provided to him or her.
The form of childhood cancer the child.
The organ where cancer was detected.
The genetic makeup of the child i.e. whether there is any inherited risk for specific health problems.

The American Child Cancer Organization is dedicated to the ongoing fight against childhood cancer and late term effects. In addition to offering ongoing support for children and families engaged in this critical battle, the ACCO is at the forefront of the fight to develop new and better treatment protocols designed to safeguard the current–and future–lives of childhood cancer victims. From advocating for additional government funding to providing insight into ongoing clinical trials, the ACCO is dedicated to finding a cure for childhood cancer so no child has to live with its long term impacts again.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Financial and Insurance Issues

When your child has just been diagnosed with cancer, your top priority is ensuring that your child gets immediate access to the treatment protocols he or she needs to fight back against this terrible disease. The very last thing you want to worry about is money: whether you can afford the very best care and what it will mean for the financial future of your family. However, taking the time to consider the financial implications of childhood cancer and developing a strategy to approach them will go a long way to ensuring a happy, healthy future for everyone in your family.

At the ACCO, our goal is to support families facing a cancer diagnosis to ensure that their time and energy can be devoted to helping their child get the best possible care and treatment. Our extensive network of local groups provides on-the-ground assistance to families, including financial support and advice, help with transportation and daycare, shopping and meal-planning, and all the many little things that become so difficult when a child is in treatment. For help finding a local group near you, we encourage you to visit www.acco.org.

How to cover the expenses of cancer treatment?

The first critical step in approaching financial planning for cancer treatment is to determine whether you have private insurance and if so, what parts of the treatment are covered and by how much, and what requires advanced authorization for coverage. The paperwork can be daunting, especially at a time when you are already trying to cope with the shock, disbelief, pain, denial, and sorrow that comes from the initial diagnosis. However, there are resources available to help you, including the hospital billing office, where administrators specialize in helping families navigate through the complicated world of insurance payments, co-pays, authorizations, and other minutia associated with insurance coverage.

If you do not currently have health insurance, there are still a variety of options to ensure financial coverage for childhood cancer treatments, including signing up for health insurance through your employer if offered, purchasing a private health insurance plan, signing up for a health plan offered through state marketplaces (developed under the Affordable Care Act), or applying for Medicaid or other low-income health care assistance. Some of the factors that you may consider while comparing different plans include:

The benefits and treatment options covered by the health insurance plan
The various costs that are linked with the health plan such as co-insurance if any, co-pays, deductibles, and premiums
Whether your child’s hospital and physicians are included the network of hospitals covered by the health plan
Whether the drugs and treatment protocols required to treat your child are covered in the health plan

You may also consider speaking directly to the hospital billing staff about coverage options and any discounts available to your family to help mitigate the high cost of cancer treatments.

In addition to planning for the cost of treatment, there are a variety of additional, and potentially unanticipated costs that can easily accumulate unexpectedly during this difficult time. For example, you may need to plan accommodations for you and other family members when your child is undergoing his or her treatment, transportation costs, and child care for other children in the family. One parent may even have to leave his or her job or take unpaid leave due to the child’s treatment schedule, resulting in the potential loss of much-needed income. While it can be difficult to anticipate these auxiliary costs of fighting cancer treatment, taking the time to plan for the unexpected and relying on the support and advice of families who have been there as well can help mitigate the potentially high costs of helping your child fight–and win–the battle against childhood cancer.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Comprehensive Cancer Care for Children and Their Families:
Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society (2015)

Authors

Sharyl J. Nass and Margie Patlak, Rapporteurs; National Cancer Policy Forum; Board on Health Care Services; Institute of Medicine; The National Academies of Sciences, Engineering, and Medicine

Description

Childhood cancer is an area of oncology that has seen both remarkable progress as well as substantial continuing challenges. While survival rates for some pediatric cancers present a story of success, for many types of pediatric cancers, little progress has been made. Many cancer treatments are known to cause not only significant acute side effects, but also lead to numerous long-term health risks and reduced quality of life. Even in cases where the cancer is considered curable, the consequences of treatment present substantial long-term health and psychosocial concerns for children, their families, their communities, and our health system.

To examine specific opportunities and suggestions for driving optimal care delivery supporting survival with high quality of life, the National Cancer Policy Forum of the Institute of Medicine and the American Cancer Society co-hosted a workshop which convened experts and members of the public on March 9 and 10, 2015. At this workshop, clinicians and researchers in pediatric oncology, palliative, and psychosocial care, along with representatives from the U.S. Food and Drug Administration, National Cancer Institute, Children’s Oncology Group, pharmaceutical companies, and patient advocacy organizations, discussed and developed a menu of options for action to improve research, quality of care, and outcomes for pediatric cancer patients and their families. In addition, parents of children with cancer and pediatric cancer survivors shared their experiences with care and provided poignant personal perspectives on specific quality of life concerns and support needs for children and families across the life spectrum. This report summarizes the presentations and discussion of the workshop.

Topics

Publication Info

126 pages | 6 x 9
Paperback
ISBN: 978-0-309-37441-5

To download the full book click here.

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Understanding the Healthcare System

For a young child, just a routine check-up or basic blood test can be absolutely terrifying. But when a child is suddenly diagnosed with cancer and facing extended hospital stays and complicated medical procedures, both the young patient and his parents have to quickly adjust to the complex, scary, and strange world of oncology and advanced medicines. The ACCO is dedicated to helping families facing a cancer diagnosis navigate this new and different world as comfortably and completely as possible, so families can focus their time and energy on comforting their child and making the best possible decisions for his or her long-term health and happiness.

So what can one expect from the healthcare system?

Children and families coping with childhood cancer face a number of challenges in the days and weeks immediately after diagnosis. When first entering into the confusing world of a hospital for tests and treatment, the medical centers or hospitals can seem confusing and even frightening; even the hospital rooms may appear scary at times. Healthcare professionals, physicians, and nurses are always well-meaning and dedicated to the long-term care of the patient, but they have many questions to ask and a lot of information to share, and the process can be simply overwhelming. Sometimes, it can even feel like the doctors and nurses are speaking a completely different and unknown language. But perhaps most frustrating is the need to handle financial concerns when all you want to do is comfort your child. Medical insurance professionals are available to help navigate through the paperwork and help you understand your coverage. In some cases, insurance companies may require advanced approval on various procedures and tests or may have queries related to payment.

So where are kids with cancer treated?

Most of the time children with cancer undergo treatment at large and advanced pediatric cancer centers located in major cities around the country. Many medical facilities specializing in pediatric oncology are members of the Children’s Oncology Group, which dictates a standard of care and prescribed guidelines so that families are well informed about all available treatment options, their benefits, and their short- and long-term risks.

Most children facing childhood cancer receive treatment in an inpatient pediatric oncology unit, although in some cases an outpatient treatment may be given at a doctor’s office, at a hospital clinic, or even at the patient’s home. In some cases, the best course of treatment may be participation in an on-going clinical trial into new and development treatment protocols; the Children’s Oncology Group maintains lists of current clinical trials and offers suggestions as to the best way to become involved in this treatment option.

Treating adolescents with cancer presents a series of unique challenges for both medical staff and parents. Adolescents want to be treated as adults and may resist treatment and hospitalization in a pediatric unit. Yet in most cases, pediatric oncology units are still the best medical option for adolescents because their cancers are more closely associated with childhood cancers than adult cancers. Many pediatric hospitals now offer separate areas designated for adolescents in order to accommodate their special emotional and physical needs.

The American Childhood Cancer Organization is dedicated to helping parents understand, navigate, and master the complicated world of pediatric oncology in order to give their child the best possible chance at fighting, and beating, childhood cancer. If your child is facing a cancer diagnosis, we encourage you to visit our website at www.acco.org and view our extensive library of free resources developed by families who have been where you are and designed to make your child’s cancer journey as easy, comfortable, and successful as possible. We are here to help you, because kids can’t fight cancer alone!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

February 4-5, 2015, Workshop Summary

DOWNLOAD WORKSHOP SUMMARY PDF

DIVISION OF CANCER TREATMENT AND DIAGNOSIS AND THE OFFICE OF CANCER GENOMICS, NATIONAL CANCER INSTITUTE

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

Dealing with a Cancer Diagnosis

In the briefest space of time, in the time it takes to say just four little words, the normal, hectic, everyday life of a family can so easily be turned upside down. Hearing those four words that every parent dreads–“Your child has cancer”–is a life-altering experience, and indeed not just for parents, but for siblings, relatives, and even friends. The normal daily routine of the family changes overnight as families cope with the diagnosis, educate themselves on the best treatment options, comfort and care for their sick, scared child while still working, providing for their family, and trying to maintain a semblance of normalcy for siblings.

Handling all of the dramatic changes that a cancer diagnosis requires needs support. Most of this support comes from family members and friends who can supply meals, care for other siblings, transportation, and emotional support. At the ACCO, we are dedicated to offering support as well. We understand just how traumatic a diagnosis of childhood cancer is, and our resources are geared towards helping families navigate this difficult time armed with the information they need to make the right choices for their child and with tools to give their children comfort and succor as they face treatment.

Detailed information from hospitals

The biggest challenge facing parents of a childhood cancer warrior is often getting the right information in a timely fashion, so they can make informed choices about treatment. The first avenue of information is usually the oncologists and physicians, who can provide detailed information about the cancer diagnosis as well as the appropriate treatment options. They will help parents navigate the often-overwhelming amount of information on the cancer itself, the different treatment protocols available today, and short-term and long-term effects of each treatment. Unfortunately, the process of absorbing all of this information, processing it, and knowing what questions to ask can be extremely difficult. Parents often need to make a number of difficult decisions quickly, signing consent and treatment forms, and making crucial decisions about the best way forward for their child while still processing the initial diagnosis.

The ACCO offers support as well. We have an extensive on-line library of information dedicated to all forms of childhood cancers, designed to help parents find the information they need when they need it. We also provide information on current treatment protocols and available treatment drugs, as well as details on how to become involved with clinical trials that may provide a cutting-edge treatment option. With our free informational resources and wealth of experience, we hope to offer parents access to critical information they need to make critical decisions and give their children the best possible chance of fighting–and beating–this diagnosis.

Dealing with emotions

After receiving a diagnosis of childhood cancer, everything seems to happen within a very short span of time, piling even more stress into an already traumatic and difficult situation. The hours and days after after the diagnosis can seem like a bad dream or an emotional roller coaster. All parents whose children are diagnosed with childhood cancer experience some level of stress and emotional pain, but of course every individual and every family handles this experience differently depending on their cultural background, experiences in their lives, and their personal coping styles. Childhood cancer in the family can be a great shock and the beginning of a testing time for the parents.

The ACCO was founded by a group of parents who have experienced this storm themselves, so they understand how difficult it can be to deal with a cancer diagnosis. Our extensive resources, offered for free to families facing this crisis, are designed to provide families with all the necessary support, advice, and guidance they need to help their families survive and prosper while battling this dreaded disease. From informational books and newsletters, to materials designed to offer aid and comfort and make the treatment more comfortable and understandable for children, to on-line support groups composed of parents going through the exact same thing, our goal is to help families know that they are not alone and that we are here to help!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

When we hear the word “cancer”, most of us immediately think of adult cancers, the ones at the center of glamorous media campaigns, well-publicized fundraising drives, and focused research efforts, such as breast cancer, colon cancer, prostate cancer, lung cancer, just to name a few. When we hear the words “childhood cancer”, most of us probably think of those same cancers, just in miniature, and assume they have the same causes and the same treatment protocols. In fact, childhood cancers are very, very different than adult cancers, and require very different, specialized treatments.

“Childhood cancer” is a general term describing more than 12 different types of cancer, each of which has numerous sub-types, and each of which requires precise treatment protocols tailored to the small, still-developing bodies of children. The American Childhood Cancer Organization is dedicated to raising awareness about the unique challenges presented by childhood cancer, and the desperate need for new and better treatment protocols that will target these dangerous cancers without the permanent and disabling late term effects that are the all-too-common result of treating childhood cancers with drugs developed to cure adult cancers. We encourage you to read about these most common forms of childhood cancer below, and support the ACCO in its mission to improve the lives of children facing this dreaded disease.

Childhood Leukemia

Leukemia is the most common form of childhood cancer, covering more than 30% of all childhood cancers. Leukemia originates in the soft inner part of the bone—the marrow—which is responsible for the development of blood cells. It usually affects the development of white blood cells that are responsible for fighting infection, compromising the body’s ability to fend off disease and heal itself, but leukemia can develop in other types of blood cells as well. The two most common forms of leukemia in children are Acute Lymphocytic Leukemia (ALL) and Acute Myelogenous Leukemia (AML). The good news is that treatments for childhood leukemia have greatly improved in the past decade, and the five-year survival rate is now over 85% for ALL, and over 70% for AML.

Central nervous system and brain tumors

This is the second most widely seen cancer in kids, making up approximately 26% of all childhood cancers. There are several categories of brain tumors and the treatment and prognosis of each of the type is different, depending on a variety of factors including where the tumor is located, the areas of the brain and/or nervous system it is affecting, and how quickly it is growing. It has been observed that children who suffer from such cancer tend to develop tumors in the lower portion of their brain, such as the cerebellum, or the spinal column. Such tumors can cause trouble with object handling, dizziness, blurred vision, vomiting, nausea and headaches.

Neuroblastoma

This type of childhood cancer starts in nerve cells inside a developing fetus or embryo, and grows into tumors in nerve clusters. While neuroblastoma can develop in any part of the body, it is most commonly found in the abdomen. It is by far the most common form of cancer in infants, and is usually diagnosed between the ages of 1 and 2, although can be diagnosed in children as old as 10. Unfortunately, early diagnosis is very difficult, and in 2 out of 3 cases, the disease has already spread to the lymph nodes by the time of diagnosis.

Wilms Tumor

Wilms Tumor develops in or near one or both kidneys, and may even begin developing while the children is still in the womb. It is usually diagnosed in children between the ages of 3 and 4 years old, and is rarely seen in kids above 6 years old. It usually shows as a lump or swelling in the abdomen. The child may often have other symptoms such as poor appetite, nausea, pain, and fever. Wilms Tumor contributes to about 5% of cancers in children.

Bone cancers

Bone cancers in children usually fall into one of two main groups. The most common form—Osteosarcoma—develops in the bones around the knees or near the ends of the long bones of the legs, although it does occasionally occur in the arm bone near the shoulder, the hip bone, or even the jaw. Ewing sarcoma (Ewing family of tumors) is a less common form of bone cancer, usually forming in the pelvis, the chest wall (ribs and shoulder blades), or the middle of the long bones of the leg. While both forms of bone cancer are most commonly diagnosed in teenagers and older children, they can be found in younger children as well. There are some commonalities between these two types of bone cancer, but they respond differently to current treatment protocols.

If you are interested in learning more about these or other forms of childhood cancer, if you would like to know more about the critical need for additional research into the causes and appropriate treatments for childhood cancer, or you would like to support the ACCO’s mission to support all children coping with cancer or its long-term effects and their families, we encourage you to visit www.acco.org to find out how you can help!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit: