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Gold Ribbon Hero: Kirby

Gold Ribbon Hero: Kirby

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Meet Kirby: a tenacious 4-year-old who BEAT cancer! ACCO initially met his mom, Sonnie, when she commented on an Instagram post. Forging a relationship with Sonnie meant that we got a peek into her life with Kirby and his brother (Aaron) and his sister (Mattea).

Kirby was diagnosed with Non-Hodgkin’s Burkitt’s Lymphoma in July 2017. He was losing weight, not sleeping, and was in major pain according to his mom. “Every day his mobility declined while his doctors ignored our concern and sent us home,” she shared.

0 copyBy August, Kirby was completely paralyzed from the waist down. The doctors wouldn’t listen. Kirby’s parents decided to take matters into their own hands and took Kirby to a larger hospital to go through more tests. After a tearful meeting with one doctor expressing she didn’t know what was wrong with Kirby, they ordered an MRI. Moments after the MRI was read, the doctor told Sonnie, “we found out what is wrong with your son, he has tumors on his spine and they are spreading. It’s cancer. We need to get him on an airplane on our way to Children’s Hospital.” By noon, the family was on an airplane to Children’s Hospital of Colorado – a home to the Sargent family for the next six months.

“Going through treatment was more than I expected. We were lucky enough to be able to stay in Brent’s Place in Aurora, Colorado. They provided everything from a tote of groceries to a place to stay and everything in between. One day, our car broke down on the way to chemo and they helped us to get to treatment at the hospital. The sense of community at the hospital and Brent’s Place was astounding.”

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The doctors found out that Kirby had cancer within his abdomen, hip, kidney and it was smothering his spine and spinal cord. They told Sonnie that he would survive but he would be wheelchair-bound for the rest of his life. As a result of cancer, Kirby has major nerve damage to his bowels, bladder, and mobility. He has no feeling of his legs, feet or toes.

Kirby and his family were visiting a local park this fall and he told his mom he was going to walk. He ended up taking a few steps with his brother and sister and hasn’t looked back since.

At 4 years old, Kirby can proudly say that he successfully beat cancer! He is walking and has not used his wheelchair for over three months. He was able to run the Butte, Montana Relay for Life as their youngest survivor. With the aid of braces, his dog and siblings, he is able to spread awareness and enjoy life. He is still in weekly doctor’s appointments and medical needs but he is getting used to the new normal.

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On Halloween, Kirby wore his Go Gold cape with his Captain America costume. Kirby’s brother’s school asked Kirby to walk in their parade and he proudly strutted his stuff while clapping and high fiving the attendees. Since being declared “NED” he’s been able to stay out and trick or treat and even go out on a family dinner.

For more information on Non-Hodgkin’s Burkitt’s Lymphoma, please visit: https://www.acco.org/childhood-lymphomas/

For free resources for your child:
https://www.tfaforms.com/4699752

What is the expected life span of Childhood Brain Tumor Cancer?

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:

What are the Signs and Symptoms of Brain Tumors in Children?

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: