Meet Hallie Jean, a CNS embryonal tumor hero.
When Hallie was three weeks old she started vomiting uncontrollably and her mother, Erica took notice. While Hallie Jean was under GI tract observation, she threw up. The GI team asked Erica if doctor’s had ever looked at her brain. Thinking this was an odd question, Hallie’s parents allowed them to take a look. An ultrasound and MRI was performed on Hallie Jean’s brain which revealed a mass.
“From then on there were two speeds – lightening fast and torturously slow – as doctors determined the best course of action to help her,” Erica remembers. Hallie Jean’s first brain surgery was on January 13, 2021 where neurosurgeons were able to remove roughly ⅔ of her tumor. A shunt was placed just a week later and that evening Hallie Jean’s parents were given her diagnosis: CNS Embryonal Tumor (NOS). The outlook was poor.
“We were in shock. We had been hopeful that her tumor type would be something curable or be able to be treated with a target approach chemotherapy. Hearing how poor of an outlook this tumor type had made us feel hopeless and alone.”
Treatment plans were minimal due to Hallie Jean’s size and age, but her parents decided to take action and give her a chance. 19 days later, Hallie Jean was taken back to the hospital where doctors noticed her shunt was not working and likely clogged with cancer cells. The tumor had grown much larger and there was a bleed that had started in the center of her brain. Hallie Jean’s parents made the difficult decision to not put her through any more surgeries. Instead, she was brought home with the help of a local hospice group, surrounded by love. Ten days later, Hallie Jean passed away.
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When Evan started demonstrating balance and speech difficulties accompanied by headaches and lethargy, his parents took notice. They took him to the pediatrician who advised them to take him to the emergency room. An on call doctor told the family that night that Evan had a brain tumor, but couldn’t give any other information. The next day, Evan was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. “We were told he had about nine months to live.”
Treatment started immediately and to date, Evan has undergone three separate rounds of brain stem radiation, participated in two clinical trials and had a brain biopsy.
Evan loves legos and baseball, reading and spending time with friends and family. “”We are extremely grateful that Evan has responded so well to radiation. He is almost three years post diagnosis, which is not common. Evan was able to go back to school and play sports for over two years. This past fall, he started having increasing symptoms and is now on hospice care.”
Currently, Evan is stable but on hospice care. He is no longer able to walk, communicate well or eat solid foods.
UPDATE: On June 10, 2022, Evan passed away.
Donate to help kids like Evan, because kids can’t fight cancer alone!®
Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month and May 17 is DIPG Awareness Day.
Meet Elin, a 6 year old glioblastoma warrior.
In December of 2021, Elin started developing evening headaches and intermittent nausea and vomiting not associated with diarrhea. On the day of her school Christmas party, Elin told her mom she didn’t want to go and that raised a red flag to her mother. Elin’s mother, Elizabeth took her to the emergency room where they ran tests. “They asked me to talk privately in a consultation room and told me the news that no one ever wants to hear.”
Elin was diagnosed with glioblastoma just eight days before Christmas. “On one hand we felt relieved for a reason for her headaches, but disbelief/shock and overwhelming sadness for the tumor diagnosis and fear for the future.” Her diagnosis showed a devastating pathological tumor which required traveling to different cities for treatment. She’s endured two craniotomies, a port placement, many MRI’s, radiation and chemotherapy.
Through her treatments, “Elin has not really complained. She was having headaches more consistently prior to her diagnosis but we didn’t fathom the severity. She recovered so well from surgery given how ill she was. She has never questioned why we have done all of the radiation treatments and oral medications. She just knows that we love her and want her to get poked and prodded. She trusts us in this. She has needle and band aid phobia but endures the discomfort and manages to be happy every day.”
Elin enjoys running and singing. According to her mom, she secretly loves rap music. She is happy to eat a hamburger every day and loves to travel. Currently she is receiving oral chemotherapy agents in a clinical trial for the next 18-24 months.
Donate to help kids like Elin, because kids can’t fight cancer alone!®
Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month. Learn more by clicking here.
Meet Caden, a 9 year old pineoblastoma brain tumor survivor.
In the fall of 2019, Caden started suffering from vomiting and headaches. “We thought he just had a stomach bug because he wasn’t feeling well for a few days. He woke up one morning in so much pain so we took him straight to the emergency room. The doctor immediately did a CT scan and saw a brain tumor. We were transferred to a different hospital where they got him on the schedule for his first surgery.” Caden was 7 years old when he was diagnosed with a pineoblastoma brain tumor. The diagnosis left the family shocked, sad, terrified and speechless.
During his journey, Caden had several surgeries during his journey including a full tumor resection, third ventricular bypass, biopsies, eye surgery and port placement and removal. He completed 15 days of radiation to the brain and spine and 15 days to the brain. Caden completed four cycles of chemotherapy. During treatment, COVID limited the visitors and left Caden feeling very isolated. “We, along with the rest of the world, were completely isolated. Not just isolated from our family and friends, but isolated from our home and safe place. Caden went four months without seeing his brothers. It was just awful. He would cry at night, not because he felt terrible, but because he missed his brothers. He was a great support to his friends at St. Jude.” One friend’s mother even said that Caden saved her son’s life since he too was away from siblings for a long period of time.
“Caden’s treatment is over, hopefully forever. As of right now, we travel to Memphis every four months for follow up appointments and scans.” Caden enjoys playing with friends and especially his brothers.
Donate to help kids like Caden, because kids can’t fight cancer alone!®
Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month. Learn more by clicking here.
Brain tumors in children make up about 15% of pediatric cancers. They are the second most common cancer in children, after childhood leukemias.
The most common brain tumor in children is medulloblastoma. There are many other that affect children, including astrocytomas, gliomas, ependymomas, germinomas and more.
Symptoms of Brain Tumors in Children
The symptoms of brain tumors in children vary greatly and depend on the size of the tumor and where it is located. They can include:
Seizures
Nausea and vomiting
Problems with walking or balance
Changes in personality
Aggression and irritability
Weakness or lack of energy
Learning difficulties
Memory loss
Problems with hearing, vision and other senses
Pain, especially back pain
Headaches, especially early in the morning or in the middle of the night
Because these symptoms are so variable and can be caused by many other things, brain tumors are often misdiagnosed at first, and it can take a long time for the right tests to be done to discover and identify the brain tumor.
Prognosis for Children with Brain Tumors
The prognosis for children with brain tumors depends on the type of tumor, its grade (a number that indicates how abnormal the cancer cells are and how fast they are likely to grow and spread), its size and its location.
For some tumors, especially those that can easily be removed by surgery, the prognosis is good. There are other tumors that very few children, or none at all, have ever survived.
Even when children do survive, they are often left with lifelong effects from the tumor and its treatment, including learning difficulties, growth problems, paralysis and more.
Treatment for Brain Tumors in Children
Like the prognosis, the treatment of brain tumors depends on the type, grade, size and location of the tumor. Treatment often involves a combination of chemotherapy, radiation and surgery.
Treatment for brain tumors is challenging because the brain is a crucial and highly sensitive organ, and it’s difficult to target treatment at the tumor without harming important parts of the brain.
Removing the brain tumor by surgery is ideal, but not always possible. Sometimes the tumor is too widespread and mixed with other healthy tissue, and sometimes surgeons won’t be able to get to the tumor without damaging other critical parts of the brain.
It’s also very difficult to get chemotherapy to reach the tumor because of the blood-brain barrier, a layer of cells that protect the brain from anything foreign — including most drugs — in the blood.
Because treatment options are limited, some parents choose to enroll their children in clinical trials.
Naomi’s Story
Naomi was just a normal 8-year-old girl until one day she collapsed in school and couldn’t remember her name. After several trips to the hospital, her parents finally got the diagnosis they never could have fathomed: stage 4 pinealoblastoma, a brain tumor of the pineal gland. It had already spread to her spine.
Naomi’s treatment plan is tough: she’s already had four brain surgeries, and she’s undergoing chemotherapy and 30 proton radiation treatments.
Naomi’s a little girl with a big heart, and she keeps her spirits up by helping the other children in the hospital. Last year, she gave away her Halloween candy to kids who couldn’t go trick-or-treating, and now she’s starting a teddy bear drive.
You can help kids like Naomi by making a donation to the American Childhood Cancer Organization. Your gift helps provide educational resources and support programs for children with cancer, survivors, and their families, as well as raise awareness about childhood cancer and the need for more research.
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.
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!
As a new partner member of the Council of State Governments, ACCO’s #WhyNotKids State Advocacy Initiative is highlighted in an article in Capitol Ideas detailing our leadership and solutions for overcoming the disparity between adult and #childhoodcancer research funding. Capitol Ideas is a magazine of CSG sharing ideas for model legislation and top priorities for states across the nation. Special thanks to CSG for featuring ACCO. Read the full magazine here.
Brain and Spinal Cord Tumors in Children: Some Introductory Basics
On average in the United States each year, there are more than 4,000 new diagnoses of childhood brain and spinal cord tumors, making this the second most common type of childhood cancer after leukemia. And on average, the five-year survival rate (meaning the number of children who survive more than five years after the end of treatment) across all types of brain and spinal cord tumors (including both malignant and benign) is very good: 3 out of 4 children diagnosed with a brain tumor will survive longer than five years.
In reality, however, discussing “brain and spinal cord tumors” in a general sense is very nearly impossible. There are a wide variety of different types of brain and spinal cord tumors, each of which is very rare, requires a unique treatment approach, and has its own set of key statistics based on a fairly limited set of data (due to the rarity of each type of tumor). Therefore, while understanding the basics of brain and spinal cord tumors is important, your child’s oncology team will be able to discuss your child’s specific diagnosis, treatment approach, and long-term prognosis based on the details of his or her unique case.
Some of the most common types of brain and spinal cord tumors in children include:
Gliomas: About 50% of all brain and spinal cord tumors in children fall into this broad category, which covers any tumor that begins in the glial cells. The most common gliomas include glioblastoma and other types of astrocytomas, brain stem gliomas (10-20% of all brain tumors) including diffuse intrinsic pontine gliomas (DIPGs), ependymomas (about 5% of all brain and spinal cord tumors in children), and oligodendrocytes (about 1% of all brain and spinal cord tumors).
Medulloblastomas:Medulloblastoma is the most common and most easily treated tumor within a broad classification known as primitive neuroectodermal tumors (PNETs). PNETs develop from immature neuroectodermal cells in the central nervous system and account for about 20% of all brain and spinal cord tumors in children. Other types of tumors within this classification include pineoblastomas, medulloepitheliomas, ependymoblastomas, and neuroblastomas that develop in the brain or spinal column.
Other, rarer forms of brain and spinal cord tumors in children include:
Choroid plexus tumors
Craniopharyngiomas
Mixed glial and neuronal tumors
Germ cell tumors
Spinal cord tumors
About Brain and Spinal Cord Tumors: Key Prognosis Statistics
Due to the rarity with which each specific type of brain or spinal cord tumor is diagnosed, we simply do not have enough information to compile accurate statistics on five-year survival rates for every single type of brain or spinal cord tumor. Moreover, thanks to the speed at which medical science is advancing, treatment options for many different types of brain and spinal cord tumors have improved dramatically over the past few decades, making older statistics no longer relevant. So while we can provide general information on the most common types of brain tumors, based on information from the Central Brain Tumor Registry of the United States (covering children treated between 1995 and 2010), it is important to note that these statistics are general and can vary widely. Therefore, these statistics do not accurately represent the chances of long-term survival for any one specific child.
The percentages listed below refer to the 5-Year Survival Rate (the percentage of children who survive five years or more after treatment):
Philocytic astrocytoma: 95%
Oligodendroglioma: 90% – 95%
Fibrillary (diffuse) astrocytoma: 80% – 85%
Ependymoma (including anaplastic ependymoma: 75%
PNETs (including medullablastoma and pineoblastoma): 60% – 65%
American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.
For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:
The brain and central nervous system control every aspect of our body, from its most basic functions such as breathing to significantly more complex functions such as movement and balance. The brain even controls personality and social interactions. So tumors located in the brain or spinal cord, whether they are benign or malignant, can significant impact how our body functions depending on where they grow and how much damage they inflict on healthy brain tissue. Survivorship issues for children with brain or spinal cord tumors often involves coping with symptoms stemming from the tumor itself, as well as from the treatment required to eliminate the tumor.
When discussing both short- and long-term side effects, it is important to understand the types of treatment options currently used to treat tumors in this very sensitive organ. The goal of any treatment plan is to remove the tumor from the body and if possible to prevent it from recurring, as well as to relieve any symptoms caused by the position and the growth of the tumor. In almost all cases, treatment for brain and spinal cord tumors will involve one or more of the following:
Surgery: whenever possible, surgery will be used to remove all or as much of the tumor as possible, while minimizing damage to healthy brain tissue
Radiation therapy: radiation may be used after surgery to kill any cancerous cells remaining after surgery, or as the main type of treatment if surgery is not appropriate
Chemotherapy: drug-based therapies are generally used to target aggressive, fast-growing tumors, to treat children under the age of 3, or for the treatment of certain cancers that have been proven to respond well to chemotherapy
In most cases, especially involving malignant tumors, treatment will involve some combination of all three. The goal is to develop a treatment plan that is unique to your child and to give them the best chance of long-term survival while minimizing the risk of both short- and long-term side effects.
Living as a Survivor of Childhood Brain or Spinal Cord Cancer: Physical Side Effects
Some side effects may result from the growth of the tumor itself within the brain or spinal cord, while other side effects may stem from inescapable damage to the brain during treatment. A child’s brain is growing and developing much more quickly and actively than an adult’s; on the one hand, this can mean that a child’s brain may be able to compensate for damaged tissue, but on the other hand, a child’s brain is also more sensitive to radiation and other forms of treatment so may be more easily damaged.
Some of the most common physical side effects of a brain tumor include:
Problems with physical coordination, muscle strength, and balance
Issues with speech and communication
Vision and/or hearing concerns
General intelligence, memory, and learning skills
Delayed growth and/or sexual maturation
Once treatment is complete, your child’s oncology team will work together to assess any possible damage to the brain and/or spinal cord and may recommend specific follow-up treatment(s) to cope with these or other side effects. Coping with physical side effects will often involve a range of different specialists, including physical and occupational therapists, ophthalmologists, audiologists, psychologists, and learning specialists.
A key part of successfully treating both short- and long-term side effects is maintaining excellent records of your child’s cancer treatment. These records will help new doctors, both in childhood and into adulthood, understand the entirety of your child’s medical history and make it easier for them to develop a comprehensive treatment plan for future medical concerns. Key pieces of information to compile include:
Pathology reports from all biopsies and surgeries
Results of all imaging tests (stored digitally)
Operative reports summarizing all surgeries
Discharge summaries for all hospital stays
A comprehensive list of the final doses of all chemotherapy and other drugs
Summaries of the doses and fields of all radiation therapies
American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:
Matthew Donald: a baby named for two amazing people in his parents’ lives, both of whom were taken by cancer. And Matthew Donald—“Miracle Matthew”, as his parents and doctors like to call him—is himself a true childhood cancer warrior, having gone through more in four short years than most people see in a lifetime. But Matthew was born a fighter into a family of fighters, showing us through it all the true meaning of courage, spirit, and joy.
Matthew’s cancer journey began even before he was born. Two weeks before his birth, his parents learned that he had fluid in his brain. The tumor was discovered at just four days old, during a surgical procedure to drain the fluid. Doctors removed a portion of the tumor, as well as the fluid, but the diagnosis was stark: Matthew had an aggressive type of brain cancer, a grade 4 neuronal glioma, consuming more than 40% of his brain, most of the right side. Matthew’s parents faced a grim choice: take Matthew home with a hospice team and make him as comfortable as possible or immediately schedule aggressive treatment.
Neuronal glioma is an extremely rare type of brain cancer, most often diagnosed in adults and appearing in less than five births per year in the United States. Gliomas grow in the connective tissue of the brain that holds the neurons in place and enables them to function. Neuronal glioma is usually fatal in children; in fact, no child has survived more than five or six years after being born with this type of brain cancer. According to the National Brain Tumor Society, not a single drug has been developed and approved specifically for the treatment of malignant pediatric brain tumors. The outlook for Matthew was not good.
Matthew’s parents, however, refused to give up on him. They chose to pursue chemotherapy and surgery to fight the tumor spreading through Matthew’s brain. After the first surgery, Matthew had five additional surgeries and six rounds of chemotherapy. He spent the first 13 months of his life in the hospital. And because of the damage to his brain from the toxic treatment protocols, the surgeries, and the tumor itself, doctors warned Matthew’s parents that even if he lived, he may never walk, talk, hear, or “live a normal life”.
Miracle Matthew
Yet Matthew showed his doctors and his parents that miracles do happen! His tumor responded to the aggressive treatment, and in late 2015, Matthew “graduated” into a survivorship program at the hospital, where he will continue to receive medical treatment and frequent monitoring and testing.
Today, Matthew embraces his life with the same courage, spirit, and determination with which he fought cancer. Now 4½ years old, Matthew has begun walking independently; not bad, as his mother notes, for a child who spent the first 18 months of his life confined to bed! He can say a handful of words and continues to build strength in his left side, which was left weakened by the tumor consuming the right hemisphere of his brain. He goes to school where he receives specialized therapy, and sees specialists outside of school three times per week for speech, occupational, and physical therapy.
Still, the tumor and the aggressive treatment have had significant side effects for which Matthew receives constant medical care. He suffers from seizures, a common side effect of any brain surgery, and will likely be on anti-seizure medication for the rest of his life. His hearing has been impacted and he wears hearing aids in both ears. The veins in both of his arms have been severely damaged from so many IV lines and blood tests, making even routine tests and scans problematic. Still, as Matthew’s mother notes, “his happy spirit has never changed!”
Thank you, Miracle Matthew, for showing us what it truly means to be a childhood cancer warrior!
For more information about Matthew and to follow his amazing story, we encourage you to view his family’s YouTube video: http://youtu.be/WZL_7pj4Nvg and visit their Facebook page at:
The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information on our resources or information on how to obtain our resources free of charge, please visit our website at www.acco.org.
For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:
On average in the United States each year, there are more than 4,000 new diagnoses of 
The brain and central nervous system control every aspect of our body, from its most basic functions such as breathing to significantly more complex functions such as movement and balance. The brain even controls personality and social interactions. So tumors located in the brain or spinal cord, whether they are benign or malignant, can significant impact how our body functions depending on where they grow and how much damage they inflict on healthy brain tissue. Survivorship issues for children with 
