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Gold Ribbon Hero: David Jr.

Tag Archives: Brain Tumor

Meet David, an adventurous 8-year-old DIPG warrior. He is a bear cub scout and a roller coaster enthusiast with a zest for life!david1

David Jr.’s symptoms came on quickly. Within a day his parents knew something was wrong. David was participating in his weekly jiu jitsu class when he could not roll. His grandfather brought him home and his parents noticed that his head was wobbly and tilted and he was acting goofy. David’s parents took him to the pediatrician who suggested David could have gotten into some medication. The doctor had ruled out an ear infection and possible recurrence of torticollis, a problem with the muscles of the neck that causes the head to tilt down. When David was a baby he had suffered from this condition and his parents thought this could be a recurrence. The doctor sent him home and said that if he had any headaches or was dizzy to bring him back to the office.

On April 17, 2018, David was taken back to the doctor’s office because of dizziness and a headache. The pediatrician mentioned that it might be a brain tumor, but his mother remembers laughing it off thinking it was so off course. The pediatrician advised his parents to take David to the ER for fear of a stroke. After a stat MRI, the ER doctor told them that there was a mass on David’s brain.

david3David was brought into the PICU almost immediately where they met the oncologist who advised David and Elizabeth about David Jr.’s condition, DIPG. Diffuse Intrinsic Pontine Glioma (DIPG) remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. After receiving the diagnosis from the oncologist, David’s parents decided they wanted to get a biopsy even though that was against the head of pediatric neurosurgery. They were advised that having the biopsy would not change the result and a cure didn’t currently exist.
David Jr.’s parents were not accepting this, so they decided to go forward with the biopsy. He received 30 days of radiation to his brainstem and then received radiation in 2019. In the summer of 2019, David made his way to Cincinnati for a trial. Unfortunately, he was denied admission because he was doing ‘too well’ to participate. The family was advised to bring him back after Christmas.

In December 2019, he lost the use of his right hand. He was on a match trial in January of 2020 and by February of 2020 he was in the ER. He was extremely lethargic and the tumor had changed. He was prescribed high dose steroids again and they waited. The first week of April during the covid pandemic, David was rushed to the hospital. This time he stayed for five days and doctors were thinking of doing radiation for the third time. In late April, David was having problems breathing. He underwent radiation for the third time and just last week he got out of bed by himself, with no assistance!

Like night and day, David went from being unable to roll, speak, move, breathe properly, and david2swallow to talking like normal, walking normally and getting around with no assistance!

Every day, the Turner family talk about their “good day score” and last week David said he had an “11, because I got out of bed and walked by myself!” This week, he rated one day a “14” because of surprises throughout the day.

David is surprising all of the doctors with his turnaround. His family went from talking about end of life care to walking around normally. During his DIPG journey, David has remained positive. When he was initially diagnosed, his parents had pre-existing plans to take him to a popular outdoor event in his hometown and they weren’t missing it just because of the diagnosis. He told his mom that “today was the best day ever” and asked if they could come back next year. Of course they did. David’s parents were dedicated to making memories with him while he was able to get around and remember. For a 9 month diagnosis milestone, his parents celebrated with a Chuck-e-cheese party. For the one year diagnosis, his parents celebrated with a Nerf party.

“Life with David is an adventure everyday. We have done as much as we can. He went to kid prom, he has been traveling and riding roller coasters. He loves to go to the beach. We have made every day the best day ever and an adventure for him. We wanted him to have as many memories as possible” said Elizabeth.david jr

This past January, David was able to meet the Governor and Senator of Kentucky where he rummaged through their desk drawers and banged the pens on the desk. Both the Governor and Senator welcomed David and helped declare May 17 as DIPG Awareness Day. Last year 32 states got proclamations passed and this year the proclamation was signed for DIPG awareness. David even declared Ice Cream Day at the youth advocacy day in the rotunda this past January.

Follow David’s Adventures on Social Media: 
Facebook: @davidsadventuredipg 
Instagram/Twitter/TikTok: @davidjrmom


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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.Brain Tumor child

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.

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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/

 

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 hereScreen Shot 2020-01-28 at 8.29.00 AM

 

Brain tumors

“What is my child’s prognosis?” This seemingly simple but critical question is often among the first that parents will ask their child’s oncologist after hearing that their child has been diagnosed with cancer. Yet while the question may be simple, answering it can be extremely complicated. In general terms, oncologists can provide statistics relating to 5-year survival rates for many different types of brain tumors in children. These general statistics, however, cannot predict an outcome for any one child. Each child’s individual prognosis will depend on the unique circumstances of their tumor and its response to treatment.

What is a 5-year survival rate and why doesn’t it tell the whole story? The 5-year survival rate refers to the percentage of children who live at least five years after they have been diagnosed with a brain tumor. As a simple statistic, it can provide some basic information about our ability to treat many different types of brain tumors. However, as with all “simple statistics”, it has three significant limitations:

  • It only takes into account children who were treated at least five years ago. It does not take into account significant improvements in today’s treatment options.
  • It can indicate prognosis for a particular class of brain tumors, but does not show differences in prognosis rates for specific tumor types.
  • It does not account for each child’s unique diagnosis and key prognosis factors so, as noted above, it cannot predict an outcome for any one child.

IMG_2106What are the key prognosis factors for childhood brain tumors?

As noted above, while five-year survival rates can be useful in general terms, each child’s prognosis will depend heavily on a unique assessment of her or her prognosis factors. These factors will impact the treatment approach and help determine your child’s potential for long-term survivorship.

Key prognosis factors for childhood brain tumors include:

  • The type of tumor
  • The grade of the tumor, or how quickly it is likely to grow
  • The size of the tumor
  • The location of the tumor
  • Whether the tumor can be removed completely with surgery (if at all)
  • Whether the tumorous cells have particular gene mutations
  • Whether the tumor has spread to other parts of the brain or spinal cord via the cerebrospinal fluid
  • Whether tumorous cells have spread beyond the central nervous system
  • The child’s age
  • The child’s functional abilities as impacted by the brain tumor

Unlike many other forms of cancer, brain tumors rarely spread to areas of the body outside the central nervous system. Instead, brain tumors can be life-threatening because of the damage they can inflict on the delicate and highly critical tissues of the brain and spinal cord. For this reason, doctors do not use two prognosis factors commonly used when discussing other types of childhood cancers: benign v. malignant and “staging”.

Five-Year Survival Rates for Common Types of Brain Tumors in Children

Based on information from the Central Brain Tumor Registry of the United States (covering children treated between 1995 and 2010), we can provide five-year survival rates for some of the most common types of brain tumors diagnosed in children. As noted above, however, it is important to remember that these statistics do not accurately represent the chances of long-term survival for any one specific child.

  • Philocytic astrocytoma: 95%
  • Oligodendroglioma: 90% – 95%
  • Fibrillary (diffuse) astrocytoma: 80% – 85%
  • Ependymoma (including anaplastic ependymoma: 75%
  • PNETs (including medullablastoma and pineoblastoma): 60% – 65%
  • Anaplastic astrocytoma: 30%
  • Glioblastoma: 20%

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

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:

Brain Tumors

What are the Signs and Symptoms of Brain Tumors in ChildrenWhen classed together in a single grouping, cancers in the brain and spinal cord are the second most common type of childhood cancer after leukemia. Brain and spinal cord tumors account for about 25% of all childhood cancer diagnoses, with more than 4,000 new cases diagnosed every year in the United States. In reality, however, it can be difficult to discuss “brain tumors” in general terms: oncologists recognize at least nine different sub-classifications of brain tumors in children, such as brain stem gliomas and ependymomas for example, with still more sub-groupings within those broad classifications.

Moreover, it is important to note at the outset that a variety of factors can impact both the initial indicators of the tumor’s presence, as well as the appropriate course of treatment, factors such as: the tumor’s location in the brain, the size of the tumor, how quickly the tumor is growing, and for treatment purposes, whether the tumor can be removed surgically. Interestingly enough, the one distinction that oncologists do not make regarding brain tumors in children is whether the tumor is benign (non-cancerous) or malignant (cancerous). Because brain tumors occur in such a vital and sensitive area of the body, both types of tumors can be life-threatening.

Keeping those caveats in mind, what are the signs and symptoms of brain tumors in children? In many children, symptoms begin to show slowly over time as the tumor grows and begins to press on specific areas of the brain. This increase in intracranial pressure can lead to general health concerns such as:

  • Headaches
  • Nausea and vomiting
  • Crossed eyes and/or blurred vision
  • Balance problems
  • Behavioral changes
  • Drowsiness, potentially leading to coma

Of course, many of these concerns are symptoms of common childhood illness and may not be related to a tumor. However, should these symptoms persist and/or worsen over time, your pediatrician may recommend a visit to a neurologist or oncologist to conduct diagnostic testing.

One potential symptom—seizures—can develop both rapidly and unexpectedly. Should your child begin experiencing seizures, it is important to seek medical help immediately from a neurologist who can help determine if a tumor is causing the seizures.

In very young children, some additional symptoms of a brain tumor may include:

  • Loss of appetite
  • Irritability
  • Developmental delays or a decline in intellectual and/or physical abilities
  • An increase in head size, especially if accompanied by unusual cranial bulging

In older children, guardians and teachers may notice unusual fatigue, personality changes, or a decline in performance or attitude at school.

In addition to these generalized symptoms, children may exhibit more specific symptoms relating to the location of the tumor within the brain. For instance:

  • Cerebrum (large, outer part of the brain): may cause weakness or numbness in a specific part of the body, usually only on one side; speech or comprehension problems; concerns about thinking, personality, and language skills; issues with vision.
  • Cerebellum: may cause problems with walking or other routine bodily functions
  • Basal ganglia: may cause unusual or abnormal body positions or movements
  • Cranial nerves (not located in the cerebrum): may cause loss of hearing, problems with balance, weakness of facial muscles, or trouble swallowing

Again, it is important to note that brain tumors in children are extremely rare and even if you notice your child exhibiting one or more of these symptoms, it does not necessarily mean that your child has a brain tumor. These symptoms can be caused by a wide range of different medical issues. However, it is important that you speak to your pediatrician about your concerns. He or she will refer you to the appropriate specialist in order to ensure that your child gets an accurate diagnosis and treatment as quickly as possible.

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

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:

What causes brain and spinal cord tumors in children?

06172016 (3)Generally speaking, “cancer” is a broad name for a condition in which cells in a particular part of the body begin to malfunction. They begin to grow, divide, and replicate more quickly than normal cells, and/or they do not die as normal when they are worn out or damaged. When these abnormal, or “cancerous”, cells originate in the brain or the spinal cord, they usually form a clump or a mass known as a tumor. As the cancerous cells continue to replicate, the tumor grows until it begins to cause damage to the brain and/or the spinal cord.

Scientists are still trying to learn exactly why some cells grow, function, and die normally, while others grow abnormally and develop into a brain or spinal cord tumor. Brain and spinal cord tumors are most likely caused by mutations (random changes) in the DNA within each cell (our DNA provides instructions governing the function of each cell in our body, and ultimately how our body looks and functions as a whole). Specifically, scientists believe that mutations to two specific types of genes may be the ultimate cause of brain and spinal cord tumors in children: oncogenes control when cells grow and divide and tumor suppressor genes slow down cell division and instruct cells to die at the proper time. Whether inherited from parents or spontaneous and random, mutations to these particular genes may cause cells to malfunction and ultimately become cancerous.

Ultimately, however, scientists do not know why these mutations occur, especially in children. While lifestyle choices such as smoking can cause genetic mutations (and thus cancer) in adults, there are no known lifestyle risks associated with childhood brain and spinal cord tumors in children. Unfortunately, the genetic mutations at the root of the tumor growth are simply random changes that cannot be predicted or prevented.

Are there risk factors for brain and spinal cord tumors in children?

A “risk factor” is anything that increases an individual’s chances of developing a disease like a brain or spinal cord tumor. As noted above, most cases of brain and spinal cord tumors in children appear to be caused by random genetic mutations without a known cause. There are very few known risk factors associated with this type of childhood cancer. The only two well-established risk factors are radiation exposure and certain rare inherited genetic conditions.

  • Radiation exposure: exposure to large amounts of radiation is known to cause some types of cancer, including brain and spinal cord tumors in children. Now that this danger is known, the medical community takes active steps to avoid exposing the brain and central nervous system of children to radiation unless absolutely necessary. In some cases, radiation may be required as part of treatment for another type of cancer; in these cases, the benefits of treating one type of cancer must be weighed against the potential risk of developing a brain or spinal cord tumor in the future.
  • Inherited genetic conditions: in less than 5% of cases of childhood brain and spinal cord tumors, children have an inherited genetic condition that may increase their risk of developing a tumor. These genetic syndromes themselves are exceedingly rare, and may include:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome (basal cell nevus syndrome)
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

Can the development of brain and spinal cord tumors in children be prevented?

Can the development of brain and/or spinal cord tumors in children be prevented? This is a question many parents will ask themselves upon receiving the terrible diagnosis that their child has a brain or spinal cord tumor. The answer is always “no”. There is no known way to prevent or protect against brain or spinal cord tumors, and absolutely nothing that parents or guardians could have done to prevent this disease.

More about Childhood Brain Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

About American Childhood Cancer Organization

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:

Introducing Super Logan, a Childhood Cancer Superhero!

logan

“Super Logan” in the Batman costume in the middle.

Today, we’d like to introduce you to Logan, affectionately called “Super Logan” by his friends and family for his amazing, courageous fight against tremendous odds. On December 7, Logan and his family joined Hope 4 Heroes (ACCO’s Colorado-based Founding Hope Fund) and Rock Bottom Downtown Denver to participate in a public PJammin’ event organized by Colorado Rock Bottom Restaurants to raise awareness about childhood cancer. We would like to thank Logan and his family for taking the time to participate in this important event and for sharing their childhood cancer story with us.

Logan’s Story: Aggressive Stage Three Ependemoma (Brain Tumor)

Logan’s childhood cancer story began one evening in June, 2014 when he collapsed unconscious while walking to his parents’ bedroom. The five-year-old was rushed immediately to the local ER, where a CT scan showed that a large mass in his brain had hemorrhaged, causing paralysis on his left side. Logan was airlifted to a larger hospital, where his parents received the worst possible news: Logan had an inoperable brain tumor located inside his brainstem and he was unlikely to survive more than three days.

Logan’s parents, however, refused to accept this devastating diagnosis. They immediately sought a second opinion from surgeons at the Barrow Institute, part of the Phoenix Children’s Hospital, who believed that at least part of the tumor could be removed. Although the outcome was by no means guaranteed, surgeons felt that surgery could at least extend Logan’s life and give him a fighting chance. With nothing to lose, Logan was transferred to Phoenix Children’s Hospital for an eight-hour surgery.

In fact, the outcome was better than anyone could have imagined: Logan’s golf-ball-sized tumor was located entirely outside of the brainstem and the surgical team was able to remove it all, in its entirety. Logan’s family described the surgeon’s reaction when he told them the news as “giddy”, not a word one usually hears in these circumstances. Logan went into surgery hoping only that his life might be extended a little bit, but miraculously, came out cancer-free!

A Second Chance at Life, but A Very Long Road to Recovery

Yet despite this amazing outcome, Logan’s cancer journey was far from over. Although the tumor was gone, for now, Logan was unable to perform many basic functions that we take for granted every day, including talking, walking, and even swallowing. Moreover, he faced the very real possibility that the tumor, a fast-growing Ependemoma, would return without x-ray radiation therapy, a treatment as aggressive as the tumor and linked to significant long-term health risks and even secondary cancers.

Again, Logan’s family sought other options. So-called “traditional” X-ray radiation therapy is mostly commonly used as a post-surgical treatment for brain tumors like Logan’s, but is linked to severe side effects and even secondary cancers, especially in young children whose brains are still growing and developing. Instead, Logan’s parents took Logan to San Diego to undergo 6½ weeks of proton radiation therapy. The goal of proton radiation therapy is to more precisely target any remaining cancer cells, using pencil-beam scanning that carefully builds up the dose layer by layer exactly at the site of the tumor, hopefully limiting damage to surrounding healthy cells.

Thus far, Logan’s amazing “miracle” continues: his regular scans, although the source of extreme “scanxiety” so common for families fighting childhood cancer, have all come back clear, indicating that Logan is still cancer-free. But Logan still faces many, many challenges; “the past two years have been one trial after the next for our brave boy,” recounts Logan’s mother. Logan spent months in rehab after the surgery overcoming the paralysis caused by the tumor, re-learning to walk, talk, and even swallow. One therapist stated that Logan was one of the hardest swallowing cases she had ever seen and that her team honestly wasn’t sure if he would ever be able to swallow normally again.

The proton therapy has left its mark as well. He has been diagnosed with a vascular condition called Moyamoya and has suffered multiple strokes, including one that temporarily left him without sight. In March 2016, Logan underwent a second serious brain surgery. Most recently, abnormal weight gain has been linked to the development of central sleep apnea, a condition in which the brain no longer automatically commands breathing during sleep. Each day seems to bring new challenges to Logan and his family, but as his mother proudly notes, Logan never gives up: “Logan will always have battles to fight but we will be here and ready to stand strong next to him. He is an incredible boy and we are so proud to call him our son.

Thank you, Logan, for sharing your inspirational story with us and for showing us that it really is possible to fight, for showing us the true face of childhood cancer. You are a true Superhero!

About American Childhood Cancer Organization

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:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

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Layla’s Story

Today, we would like to introduce you to Layla. Layla is a strong, courageous four-year-old who has been battling a rare, inoperable brain tumor for the past 15 months. Diagnosed at the age of two, Layla’s tumor has not responded to “traditional” chemotherapy-based treatments, and her family now faces the daunting prospect of attempting less well-known options, some well-researched and some still experimental, in the on-going search for an effective weapon against this devastating disease. In the meantime, they take every day as it comes, finding tools and resources to help Layla cope with the difficult days and sharing her smiles and giggles on the good ones. We hope you will join us in offering Layla and her family our support as they embark on this next stage of their cancer journey.

Juvenile Pilocytic Astrocytoma

20160908_132323Layla has Juvenile Pilocytic Astrocytoma, a rare brain tumor that grows in the supportive tissues of the brain known as astrocytes. In Layla’s case, the tumor is located on her brainstem, blocking the natural flow of cerebral spinal fluid. At the time of her initial MRI, the spinal fluid had begun to fill her brain causing headaches and mobility issues, and eventually leading to “life-threatening” pressure that required emergency surgery to drain the fluid and relieve the pressure.

Because of its location on the brain stem, oncologists could not surgically remove the tumor without risking Layla’s life. Another traditional tool in the fight against brain tumors—radiation—is not appropriate for children Layla’s age due to the extreme risk of severe brain damage. Still, the prognosis was hopeful: JPA is usually a benign, “low grade” tumor that Layla’s team felt would probably not grow. They placed a permanent shunt to enable the normal drainage of spinal fluid around the tumor, with the expectation that it would last for 10-15 years. Layla would receive an MRI every three months for the first year to monitor the tumor, with the frequency of MRIs decreasing over the years.

20161013_115549Unfortunately, the complications began almost immediately. First, Layla’s shunt over drained, causing massive bleeding. Two months later, the shunt failed to drain again, leading to more hydrocephalus. Another couple of months, another malfunction: Layla was back in the ICU for a failed shunt, hydrocephalus, and now bleeding as well. Each of these complications required emergency surgery to relieve the hydrocephalus, then additional surgeries to repair damaged tissue and replace the shunt.

20160908_134459Throughout this difficult period, routine scans of the tumor showed good news: as expected, the tumor was not growing. Yet once again, Layla’s family learned just how quickly bad news can follow good: just two weeks after a positive scan, another follow-up scan showed 25% growth in the size of the tumor. Layla immediately began chemotherapy through a clinical trial. Unfortunately, after three months of chemotherapy, it has now become clear that Layla’s tumor is not responding and she has been taken off the chemotherapy in order to avoid the potential for negative side effects.

Hero Beads and Port-a-Cat: “Life Changing” Resources for Layla and Her Family

img_9759As difficult and as devastating as this journey has been for Layla and her family, they have found much-needed help and support from friends and family, as well as tools and resources to help them cope. ACCO’s informational booklets have helped Layla’s parents navigate the incredibly difficult world of childhood cancer, while Layla loves Marvelous Marleigh, the only age-appropriate book Layla’s mother could find to help Layla understand what was happening to her. And perhaps most importantly, as her mother notes, “Cozy the Port-a-Cat was a life-changing therapy tool for her and her ACCO blanket is her most coveted comfort item.” Each time Layla visits the hospital, Cozy is treated like a patient, too, with his own regimen board just like Layla’s!

And Layla and her family have been able to document Layla’s journey with ACCO Hero Beads. Choosing a Hero Bead for every procedure gives Layla a sense of accomplishment and a feeling of ownership over her individual story; her Hero Beads provide a meaningful way to visually represent what she has gone through over the past 15 months. ACCO Hero Beads can be purchased individually or in bulk from our store; 100% of the proceeds continue to fund ACCO’s programs to help and support kids with cancer and their families! For more information about ACCO’s Hero Bead powerful program, we encourage you to visit our website at:  https://www.acco.org/hero-beads/.

About American Childhood Cancer Organization

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.

 

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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:

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