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Staging and Prognosis Factors for Childhood Spinal Cord Tumors

Staging and Prognosis Factors for Childhood Spinal Cord Tumors

Childhood Spinal Cord Tumor Cancer – Stages and Prognosis

Staging and Prognosis Factors for Childhood Spinal Cord TumorsThe central nervous system (CNS) is composed of the brain and the spinal cord, a delicate and sensitive column of nerves protected by the boney vertebrae of the spine. Statistically, CNS cancers are all grouped together as “brain and spinal cord tumors”, but of course in reality, there are a number of different and distinct types of spinal cord tumors, and each specific tumor requires a unique treatment approach and carries its own outlook for long-term survivorship.

When diagnosing cancer in either children or adults, oncologists usually differentiate between malignant (cancerous) cell growths or benign (non-cancerous) tumors. This distinction is much less important for spinal cord tumors, however. First, spinal cord tumors may spread within the CNS but rarely spread into other organs. Second, both malignant and benign tumors can be extremely life-threatening. As the tumor grows, it can press on and potentially restrict critical tissues of the CNS. Thus, both malignant and benign tumors can cause similar symptoms and have similar prognosis factors; both may require an aggressive treatment approach.

There is another critical difference between spinal cord tumors and other types of childhood cancer, also related to diagnosis: staging. When diagnosing most types of childhood cancer, oncologists will determine the cancer’s stage, or how far it has spread beyond the original point of growth. However, staging is not usually appropriate for spinal cord tumors, because as noted above, they do not, in most cases, spread into other organs or body systems. Instead, when determining an appropriate treatment option for a spinal cord tumor, oncologists will focus on key “prognosis factors”.

Key Prognosis Factors for Spinal Cord Tumors

Rapid advances in our knowledge of the central nervous system, as well as in available medical technology, mean that treatment options for children coping with a spinal cord tumor are more focused, more powerful, and more effective than ever before. And for many children, this means that the prognosis, or outlook, is excellent: statistically, about 75% of children with a tumor of the central nervous system are likely to survive more than 5 years.

However, a very basic statistic about 5-year survival rates hides a great deal of variation between specific types of tumors. In fact, each child’s long-term prognosis depends on a unique assessment of his or her key prognosis factors. These prognosis factors determine the unique treatment approach appropriate for your child’s unique diagnosis. In general, the key prognosis factors for most types of spinal cord tumors include:

  • The type of tumor
  • The size of the tumor at diagnosis
  • The location of the tumor at diagnosis
  • The “grade” of the tumor, or how quickly it is growing (grade I and II tumors usually grow slowly; grade III and IV tumors are more invasive)
  • How much, if any, of the tumor can be removed with surgery
  • Whether the tumorous cells have particular gene changes (mutations)
  • Whether the tumor has spread to other parts of the CNS
  • Whether tumorous cells have spread beyond the CNS
  • The child’s age at diagnosis
  • The child’s functional abilities as impacted by the tumor at diagnosis

If your child has been diagnosed with a spinal cord tumor (whether benign or malignant), his or her oncologist will help you understand all of these prognosis factors as they relate to your child and his or her specific type of tumor. While the general guidelines listed here and in other similar literature are important, they are just that: general. Only your child’s oncology team can determine your child’s key prognosis factors and the implications of those prognosis for late effects and long-term survivorship.

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

Gold Ribbon Hero: Kaydence

Meet Kaydence, a donkey-loving 6-year-old diagnosed with Acute Lymphoblastic Leukemia.49203532_336420513753405_4458034366571872256_n

In the summer of 2018, Kaydence began bruising easily and looked exhausted. Her mother, Tarah noticed her color was off and on the night of July 4, 2018, she had a gut feeling that something was wrong. After getting labs done, the ER doctor came in and said, “I’m going to be honest – I don’t have good news. She’s got leukemia and if you waited another day – it would have been too late.” At the time of diagnosis, Tarah was eight and a half months pregnant with baby number five. A port was placed the next day.

Induction therapy started quickly after diagnosis and on July 17, 2018, Tarah was in the hospital delivering her fifth child when she received a phone call from her husband.   He rushed Kaydence to the emergency room with a fever. Three hours later, Tarah received a call saying, “This is childlife. Dad had to step away for a minute. What do you know?” In disbelief, Tarah’s mind started spinning. “What do you mean, what do I know?”

Tarah was immediately wheeled down to the emergency room to see her daughter lifeless on the table surrounded by doctors. “Kaydence had to be resuscitated for 15 minutes,” said the doctors. Kaydence’s intestines and stomach had ruptured and the doctors feared she wouldn’t make it through the night. Kaydence survived the night and was stable enough for a CT scan but not 0-7surgery. After reading the scans, doctors determined that her intestines and stomach were severely damaged but no holes were present saying that she might actually recover. They spent 10 days on life support in the intensive care unit.

Kaydence has persevered through many challenges during her treatment for ALL. In October 2018, after a poor response to the normal chemotherapy treatment, her family decided to proceed with CAR-T therapy. During the infusion, Kaydence had a very rare anaphylactic reaction to the preservative in the cells. She also experienced tumor lysis with lymphodepleting chemotherapy before infusions.

She’s had to re-learn how to stand, walk, use her hands and fingers, potty train and use words. She was on dialysis because of poor kidney function and she’s beat septic shock and e. Coli. Miraculously, even though Kaydence underwent 15 minutes of CPR, she showed no signs of brain damage or evidence of her ever needing CPR. Her ribs were not broken and her heart was not damaged.0-11

As of March 15, 2019, Kaydence said that her bone marrow is MRD-negative and she has since started school! She is continuing to paint and craft and enjoy her family.

Follow Kaydence’s story on Facebook at @TeamDonkeyStrong

For more information about Acute Lymphoblastic Leukemia: https://www.acco.org/childhood-leukemias/

Donate to help kids like Kaydence: http://www.acco.org/donate

 

ACCESS Global Initiative to Improve Availability of Childhood Cancer Medication

ACCO’s CEO, Ruth Hoffman and Access to Childhood Cancer Essentials (ACCESS) co-founder AvramLocal-Patient-Access
Denburg worked on a global initiative that is improving the availability of cancer related medications for children.

Childhood cancer has no borders; yet, sadly childhood cancer medicines do,” said Ruth Hoffman, CEO of the American Childhood Cancer Organization, and co-founder of ACCESS. “A major barrier to treating and curing children with cancer in low- and middle-income countries is lack of access to essential medicines.

In January, a partnership with Teva Pharmaceutical Industries Ltd. led to emergency provisions of 13 cancer medicines included on the World Health Organization’s Essential Medicine List – more than 17,000 vials – to children with cancer in Ethiopia.

The request came as an urgent plea to Ruth Hoffman from parents of children with cancer being treated at Black Lion Hospital in Addis Ababa, Ethiopia. “We are so grateful to our colleagues at TEVA and to Giancarlo Francese, Head of Teva Access who quickly responded to this crisis situation,” said Ruth.

ACCESS is also launching an innovative research program to study the many critical barriers to childhood cancer drug access in Kenya, Rwanda, Uganda, Tanzania and Ethiopia.

Read more about Teva’s donation and ACCESS below.

Teva’s article about ACCESS’ donation: https://tevapharm.com/featuredstories/Moving_at_light_speed.aspx

Read the full press release here: https://www.acco.org/blog/accessinitiativetomedicine/

Learn more about ACCESS: https://accessentials.org/

 

Spinal Cord Tumors in Children: Treatment Options

Spinal Cord Tumors

Together, the brain and the spinal cord make up the central nervous system (CNS), which is responsible for controlling nearly all of our bodily functions. We often think of the spinal cord as the “back bone”, or the collection of vertebrae that we can feel running up the back. In fact, these vertebrae serve to protect the spinal cord, a delicate column of nerve tissues responsible for carrying critical informational signals between the brain and the body.

Spinal Cord Tumors in Children Treatment OptionsWhen classifying childhood cancers and discussing important statistics, tumors of the brain and tumors of the spinal cord are often lumped together as one broad grouping (although, of course, when diagnosing childhood cancer, each tumor is specified as a more specific “type”). And in general, treatment options for both spinal cord tumors and brain tumors are the same, usually consisting of some combination of

  • Surgery;
  • Radiation therapy; and/or
  • Chemotherapy

However, generally speaking, spinal cord tumors are often significantly more difficult to treat with surgery; therefore, for many (but not all) patients, radiation therapy and/or chemotherapy will play a larger role in the treatment of spinal cord tumors than it does for some of the more common types of brain tumors.

Radiation Treatment for Spinal Cord Tumors

Because of their location in the spinal cord, and how they grow and interact with the delicate nerves of the spinal cord, spinal cord tumors are—in general—more difficult to treat with surgery alone. In some cases, the tumor cannot be removed entirely, although surgery may be used to remove as much of the tumor as possible. In other cases, the location of the tumor makes it impossible to access the tumor safely; in other words, surgically removing the tumor may cause too much damage to the healthy tissue of the spinal cord.

Unfortunately, radiation therapy affects healthy tissue as well as tumorous tissue, although not as quickly. Therefore, every radiation therapy treatment is designed to maximize damage to the tumor—enough to destroy as many cancerous cells as possible and (hopefully) prevent the tumor from re-growing—while minimizing potential damage to healthy tissue. However, the short- and long-term side effects of radiation therapy are potentially dangerous, and therefore the risk of radiation therapy as a treatment tool must be weighed against the benefits it offers in the fight against childhood cancer. In general, as the risk of long-term side effects is higher in younger children, radiation therapy is usually not recommended for children under 3 except as a last resort. Your child’s oncology team will help you understand the risks and benefits of radiation therapy as a potential treatment option, to ensure that you are educated in the best treatment options for your child.

Treatment Options for Some Common Types of Spinal Cord Tumors

We will present some of the most common types of spinal cord tumors and their “recommended” treatment options here; however, it is important to remember that every child and every diagnosis is unique. Your child’s oncology team will develop an appropriate treatment specifically for your child.

  • Astrocytomas of the spinal cord: generally cannot be removed entirely with surgery. Surgery may be used to remove some of the tumor, followed by radiation therapy; some cases may require only radiation therapy.
  • Meningiomas: usually can be treated solely with surgery.
  • Ependymomas: generally can be removed through surgery, may be followed by with radiation therapy.
  • Choroid plexus tumors: benign papillomas are usually treated with surgery. Choroid plexus carcinomas are malignant, and while surgery can remove the tumor entirely, most oncologists will recommend following surgery with radiation therapy and/or chemotherapy.
  • Craniopharyngiomas: because these tumors usually grow very close to the pituitary gland, the optic nerves, and blood vessels critical to the brain, they are difficult to reach surgically. Surgery may be used to “debulk” the tumor (remove most of it); radiation therapy is the most common approach.
  • Germ cell tumors: surgery may be used to diagnose the type of germ cell tumor (germinoma, teratomas, and yolk sac tumors are the most common types), but can rarely remove it. Radiation therapy or a combination of radiation therapy and chemotherapy is the most common treatment approach.

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

Gold Ribbon Hero: Emma D.

E3077447-974F-41AA-9D38-38DA6F967CA5Meet Emma, a PBR-loving, supergirl cancer warrior currently fighting stage IV medulloblastoma. She enjoys arts and crafts of all kinds, cooking, playing games and making jewelry. She also loves circuit boards, making slime and loves to paint.  She is a huge P!nk fan and was lucky enough to see her live last weekend!FullSizeRender

In 2017, Emma was a straight-A student heading into sixth grade. As a 5th grader, she  received ‘Student of the Month’ seven times. She was recognized for helping classmates, was on the honor roll, and a member of the student council. She was even a member of the robotics team for a year. Emma’s mother, Megan, said she was called several times throughout the school year because Emma was late for class. It turns out “she took too long hugging her former teachers and other students in the hall and was late,” recalls Megan.

In May 2018, Emma began dropping weight. She started vomiting occasionally but nothing too alarming. She was increasingly lethargic, had no appetite and headaches had started. After one episode of violent vomiting, Megan took Emma to the doctor but without a pattern, the doctor thought it was puberty. After swimming one day, Emma told her mother she was exhausted, which was out of character.48195660_1906290866346933_341537946861568000_o

Megan received a call that weekend from Emma’s dad after Emma was found vomiting in her bed. Emma was taken to the emergency room twice in the same day. On the second trip to the ER, a CT was ordered and ten minutes later Emma and her mother were given the news of her Medulloblastoma cancer diagnosis. “We were just in shock. We are still in shock. I have three friends with kids who have brain tumors. Two have died, Emma thought she was dying,” remembers Megan.

D177C210-DAD7-421E-932E-97F4E1308367In the span of ten minutes, Emma’s life changed forever. Megan said that the doctor said, “we see a mass, she is being flown to Oklahoma City.” It took a few minutes before I could catch my breath. I held Emma’s hand and I told her straight up. “Emma, the doctors say they see a tumor and we have to fly to Oklahoma City for another doctor to look at you.” Emma said, “Momma, I will be your angel, and when it is time for you to come, I will come get you.” Heartbreaking.

Emma was transferred to OKC and admitted to the PICU where a shunt was placed and39878975_1857360391239981_8600342818176630784_n an MRI was performed two days later. The next day, the tumor was removed during her craniotomy. After a preliminary diagnosis of medulloblastoma that was believed to be cancerous, it was confirmed two days later.  Treatment has consisted of a port placement, 30 proton therapy treatments, lumbar puncture, chemotherapy, MRI’s of the spine and head under general anesthesia, bone targeted therapies (BTT), bilateral tubes, and multiple hospitalizations. Since Emma’s tumor is so rare, she is currently in a trial where she gets 25% less chemo and proton therapy doses. She’s the only one participating in this study because of the rarity of the tumor.  Her results will help to change the way cancer is treated.

Getting through treatment has been hard on Emma. When she started treatment she was an outgoing sixth grader. Since losing her hair she’s become withdrawn from other children. Despite her difficulties she continues to work diligently on her school assignments and doing Epic Charter School.

Screen Shot 2019-03-29 at 2.24.44 PMAs a result of her diagnosis, Emma suffers from anxiety and depression, decreased fine motor skills and complete left sided deafness.  However, Megan says, “She has finally embraced beauty and that it comes in lots of different ways. She is funny and spirited – and yet will lay in my lap and cry often at night.” Emma can be described as ornery, witty and a quick thinker – and her mom wouldn’t have it any other way.

For more information on Medulloblastoma please visit: https://www.acco.org/brain-cancers/

To donate to childhood cancer fighters like Emma visit www.acco.org/donate

 

Update: Advocacy for Childhood Cancer

On February 5, 2019, President Trump announced funding for a new Childhood Cancer Initiative in the amount of $500 million over 10 years.  Gold Ribbon HeroDysPIXrW0AAtrpi.jpg-large and Amazon + ACCO’s 2018 Ambassador Grace Eline was in the Gallery for the State of the Union speech as an Honored Guest of the President and First Lady.

ACCO has been working to raise the profile of childhood cancer for 49 years and we were thrilled to see the President recognize this cause as a national priority.

Since the announcement, we have been working tirelessly to maintain momentum.  We are continuing our longstanding leadership role in working with policymakers and agenda setters in Washington to bring the President’s initiative to fruition and to push forward other policy priorities for kids and families fighting cancer.  Here are a few updates on our recent advocacy work. You can stay up-to-date on these efforts by signing up for our Advocacy newsletter.

On the Ground at HHS

Dtv19ZRXQAAhFIgBeginning in early 2019, our team at ACCO has had several positive and productive meetings with the top leadership at the Department of Health and Human Services (HHS), including HHS Secretary Alex Azar and HHS Assistant Secretary for Health Dr. Brett Giroir.  These discussions were unique opportunities to provide decision makers with critical data gathered from our work across the country and around the world. We are grateful to the Administration for giving us a seat at the table and look forward to continuing to share insights and work together.

Early this month, we also participated with other childhood cancer advocacy organizations in a kick-off call with HHS and the National Cancer Institute (NCI) to open dialogue about plans for the President’s Childhood Cancer Initiative and its intended focus on broad-scale data sharing.  We recognize this effort as an opportunity for the childhood cancer community to lead and will continue to participate in these important strategy discussions as the Initiative takes shape.

Grace Goes to Washington…Again!

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Last week, ACCO Ambassador Grace Eline was again invited to the nation’s capital, this time to the White House for a round table discussion with Vice President Mike Pence and leadership from HHS and NCI.  Grace and other young advocates shared their own experiences as cancer fighters and survivors and discussed the promise of the President’s Childhood Cancer Initiative. We are proud of Grace’s tireless efforts on behalf of all kids and are looking forward to supporting her and other ACCO Ambassadors and advocates as we work with the Administration to achieve the President’s pledge.

#FightCancerforKids at Action Days

55798247_10103588645463003_1038200200826454016_nACCO’s team attended Action Days in Washington alongside over 200 other childhood cancer advocates from across the country.  In hundreds of meetings on Capitol Hill, Action Day advocates thanked Congress and the Trump Administration for making childhood cancer a national priority and urged them to keep up their important work to ensure full funding for efforts across the board to improve treatments and find cures.  Specifically, we called on Members of Congress to fully fund: the National Institutes of Health (NIH) and NCI; the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, which was passed into law last Summer; and the President’s Childhood Cancer Initiative.

ACCO’s Global Commitment
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In addition to ACCO’s leadership in the U.S., ACCO is also deeply engaged in childhood cancer advocacy at the global level.  As a follow up to our participation as
invited speaker at the U.N. General Assembly’s side event on childhood cancer, we serve on the steering committee and working groups of the World Health Organization’s (WHO) Global Initiative on Childhood Cancer. In this capacity we are working to address the global survival disparity of children diagnosed with cancer, focusing on increasing access to essential medicines, supportive care, 
innovative research, patient and family education and making childhood cancer an international child health priority.

 

 

As the oldest and largest grassroots childhood cancer organization, and the only U.S. member of Childhood Cancer International, ACCO is dedicated to fighting cancer, the number one non-communicable disease killer of children in the U.S.  We know that childhood cancer is a big problem that requires an even bigger effort to find a solution. That’s why we are pushing for progress all around the world and at every level. 

To sign up for federal and state-level advocacy newsletters, click here.

Childhood Brain Tumors: Staging and Prognosis Factors

Childhood Brain Tumor Cancer – Stages and Prognosis

When discussing childhood cancer, we often hear about the “stage” of the cancer. What does that mean, and is it relevant when discussing brain tumors in children? When oncologists first diagnose a case of cancer, part of the diagnosis usually involves an assessment of how and where the cancer has spread from the original point of growth. This assessment is known as “staging”. For many types of pediatric cancer, the “stage” of the cancer is an important factor in developing an appropriate treatment plan and determining the patient’s prognosis, or outlook.

Brain Tumors childIs staging relevant for childhood brain tumors? In fact, this is one of the major differences between brain tumors and other types of cancers in children. Regardless of whether they are malignant (cancerous) or benign (non-cancerous), brain tumors in children rarely spread to other organs beyond the central nervous system (which includes the brain and the spinal cord). Therefore, oncologists do not utilize a formal staging system when diagnosing and treating brain cancers.

Yet although brain tumors do not generally present a threat to other organs of the body, both malignant and benign tumors can be extremely dangerous—and often life-threatening—as they interfere with the brain’s ability to function normally. As a brain tumor grows, it will press on, impede, or otherwise impair the healthy brain tissue nearby, depending on its precise location. Therefore, the location, size, and rate of growth are used to determining both treatment options and long-term prognosis, instead of more traditional “staging” used when diagnosing other types of cancers.

Prognosis Factors for Childhood Brain Tumors

Instead of staging, oncologists dealing with a diagnosis of a brain tumor will look at “prognosis factors” to help determine treatment options and to help assess each child’s potential for long-term survivorship. Some key prognosis factors include:

  • The type of tumor: a brain tumor’s “type” is based on the type of cells from which the tumor began to grow. Some of the most common types of brain tumors in children include: gliomas (almost 50% of all brain tumors in children) such as glioblastomas, oligodendrogliomas, ependymomas, and brain stem gliomas; astrocytomas, and embryonal tumors (10-20% of all brain tumors in children) such as medulloblastomas.
  • The tumor’s “grade”: A tumor is “graded” based on how quickly it is growing. Most oncologists use a four-level system of grading when dealing with brain tumors in children. Low grade tumors (grade I or grade II) usually grow relatively slowly and are less likely to invade or infiltrate adjacent healthy brain tissue. High grade tumors (grade III or grade IV) grow relatively quickly and are considered invasive. High grade tumors usually require a more aggressive treatment approach.
  • The tumor’s location and size: The location and size of the tumor will greatly impact the symptoms the tumor causes, due to the specific functionality of the healthy brain tissue impacted by the growth of the tumor. Location and size will also determine treatment options; whether the tumor can be surgically removed, and how much of the tumor can be surgically removed, will greatly impact both treatment options and long-term prognosis.

Other prognosis factors for childhood brain tumors include:

  • Whether the tumorous cells have specific 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 and functional abilities as impacted by the tumor

Just as every child is unique, so each cancer diagnosis is unique as well. If your child has been diagnosed with a brain tumor (whether benign or malignant), your child’s oncology team will ensure that you understand all of these prognosis factors as they relate to your child and his or her type of cancer. While the general guidelines contained here and in other similar literature are important, they are just that: only general guidelines. Only your child’s oncology team can determine your child’s key prognosis factors and their implications for long-term survivorship.

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

Gold Ribbon Hero: Colton R.

unnamed-6Meet Colton, a Super Mario collector and identical twin brother to Jaiden. He loved watching Spongebob and wanted to be a chef when he grew up. Colton was diagnosed with diffuse intrinsic pontine glioma (DIPG) in 2016 and fought a hard battle before losing his life after 16 months.unnamed-3

On the morning of October 10, 2016, Colton’s mom noticed that Colton’s walk was abnormal. Thinking it was just a sleepy walk, Shannon sent him to school. When the nurse called Shannon, she knew that something was wrong. The nurse suspected a stroke because Colton was exhibiting left sided weakness and urged her to take Colton to the emergency room. The doctor appeared very concerned and instructed Shannon to take him to the nearest children’s hospital two hours away. Following an MRI, the oncologist and neurologist confirmed the diagnosis of DIPG. The family was told there was no cure for DIPG and at best, they had 9-12 months left with Colton.  “We were devastated, not only did our child have a brain tumor, but one that had less than a 1% survival rate,” Shannon remembers.

unnamed-1According to Shannon, “radiation would only buy us time and there were trials we could participate in, but none were proven to save our child at this point.” During his treatment, Colton had multiple labs done, hospital stays, pneumonia, seizures and eventually lost his ability to walk, talk and swallow. He endured 30 rounds of radiation with a smile on his face. He also participated in a clinical trial for a year at Cincinnati Children’s Hospital.

Shannon said that, “Colton was so incredibly brave through all he endured. He kept a smile on his face and never let his diagnosis get him down even when he lost his ability to walk and talk he kept a smile on his face. As a family we have created the Team Colton DIPG Foundation to assist other families battling DIPG. We continue to spread awareness for Childhood cancer and pray for the day when no family is ever told there’s no more we can do.”unnamed-5

The Ritchie family has established Team Colton DIPG Foundation that offers grants to families of children battling DIPG.  You can learn more about them here: https://www.facebook.com/groups/270014580059933/?ref=share

To learn more about DIPG: https://www.acco.org/brain-cancers/

To purchase the DIPG book: https://store.acco.org/collections/acco-books-and-information-resources/products/understanding-the-journey-a-parents-guide-to-dipg

Donate to help kids fight cancer: https://www.acco.org/donate/

 

Potential Treatment Options for Childhood Brain Tumors

Childhood Brain Cancer Treatment

 

Potential Treatment Options for Childhood Brain TumorsThe brain is the “command center” for our entire central nervous system, yet despite its critical role in every aspect of human life, it is one of the most delicate organs in the entire body. Any abnormal growth, or tumor, in the brain—whether technically malignant (cancerous) or benign (non-cancerous)—can cause serious damage to the healthy brain tissue and significantly impact the body’s ability to function normally. Therefore, treating a brain tumor requires taking into consideration

  • how to best remove/eliminate the tumor;
  • how to relieve symptoms caused by the tumor; and
  • how to minimize damage to the healthy tissue of the brain.

As with all types of childhood cancer, every child will have a unique treatment plan based on his or her specific type of cancer; for brain tumors, the treatment plan will depend specifically on the type of tumor, the size and location of the tumor, the grade of the tumor, and the impact of the tumor on healthy brain tissue. In general, however, treatment for brain tumors in children generally involves three types of treatment:

  • Surgery
  • Radiation Therapy
  • Chemotherapy

Whenever possible, treatment will usually begin with surgery, with the goal of removing all or at least most of the tumor. Radiation therapy and/or chemotherapy may follow surgery in order to (1) eliminate any remaining tumor cells that could not be removed during the surgery and/or (2) prevent the tumor from re-growing if possible. Radiation therapy and chemotherapy will play a more central role in treating brain tumors that cannot be safely removed through surgery; however, because surgery is usually the first line of treatment, this blog will focus on surgical options for brain tumors in children.

Surgical Treatment for Brain Tumors in Children

The goal of surgery as treatment for a brain tumor is, in most cases, to remove or destroy as much of the tumor as possible while minimizing damage to the surrounding healthy tissues of the brain. In some cases, the surgery may serve as a simultaneous opportunity to conduct a biopsy, which involves collecting a sample of the tumor to be examined under a microscope; this may be required to determine the type of tumor and whether the tumor has specific gene mutations (changes) that could impact long-term prognosis. The biopsy, if necessary, will help your child’s oncology team determine post-surgical treatment options.

The most common type of surgical procedure for treatment of a brain tumor is a craniotomy. Depending on the location of the tumor, and whether brain function must be assessed during the procedure, the child may be under general anesthesia or may remain awake under local anesthesia. The surgeon will remove a piece of skull (the boney area of the head that protects the brain) large enough to enable him or her to insert instruments and view the brain under operation, if necessary and if possible. The tumor may be cut out with a scalpel or special scissors or it may be suctioned out with a specialized device, and then the removed piece of bone reattached to the skull.

Today’s surgeons utilize modern imaging technology as much as possible both before and during surgery to precisely locate and map the edges of the tumor. Imaging tests such as MRIs and CT scans before surgery, and ultrasounds during surgery, maximize the surgeon’s ability to identify and remove tumorous cells while reducing the risk of removing healthy tissue. Some specialized imaging tests, such as Functional MRIs, Intraoperative cortical stimulation, and intraoperative imaging also enable the surgeon to detect a particular function of the brain to help remove the tumor as safely and as extensively as possible.

The idea of brain surgery can be scary, for children and parents alike. Luckily, our knowledge of the brain continues to advance each and every day, as does our ability to harness the power of advanced tools and techniques, making brain surgery safer and more successful than ever. We encourage you to share your concerns—and your child’s concerns—with your child’s oncologist and surgical team right up front, so they can ensure that you and your child are as comfortable as possible throughout the entire treatment process.

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

Gold Ribbon Hero: Kyler

Meet Kyler, a monster truck loving, lego building typical 4-year-old who has been diagnosed with Acute Lymphoblastic B-Cell Leukemia.31944601_173105830075845_49972262316539904_n

In October 2017, Kyler started having unexplained fevers in the evening for approximately three weeks. He then began suffering from leg pains in the middle of the night. The pains were so severe that he would cry all night long and refuse to walk. His mother, Ashley, decided to take him to the pediatrician. The doctor performed labs on Kyler and he was referred to a specialist for possible juvenile rheumatoid arthritis. Subsequently after, he was referred to an oncologist. The oncologist scheduled a bone marrow biopsy confirming Ashley’s worst fear. 31890379_172294093490352_2536333782068232192_n

On November 21, 2017 Kyler was diagnosed with Acute Lymphoblastic B-Cell Leukemia. “Our visit with the oncologist was the longest 2 hours of my life. At that time, most of out family was in town for Thanksgiving. We made a decision to wait until the day after Thanksgiving to admit Kyler. On 11/24/17, we were at the hospital at 5 am for Kyler to have a port placed and was admitted to Beverly Knight Olson Children’s Hospital to begin treatment” remembers Ashley, Kyler’s mom.

Kyler is undergoing aggressive treatment consisting of chemotherapy given through a port, intrathecal chemotherapy, chemotherapy pills and steroids. His protocol and treatment progresses through phases; induction, consolidation/intensification and maintenance. As a result of the treatment, “Kyler has developed a foot drop in the right foot and peripheral neuropathy from Vincristine,” Ashley said. He is in physical therapy for his foot and now in speech therapy as a result of the neuropathy drug Neurontin. Kyler is suffering from PTSD as a result of the traumatic process and takes antidepressants to help him self-regulate. Currently, he’s waiting for occupational therapy because of weakness in his arms and hands due to neuropathy.

29261076_159889458064149_7602691828793475072_nWhen treatment began, Kyler could not comprehend what was going on, but now one year older, and Kyler can express his feelings about treatment and cope. Ashley said, “Over the last three months, Kyler has really began to cope with the disease. He has began to talk about his feelings and is understanding more and more. We try to explain things to him in a way he can understand.”

Kyler began pre-kindergarten last August, and he loves his teacher and school. He is enjoying interacting with others and going to the playground. Kyler loves the beach and playing outside and in the mud. He loves playing with his transformers toys, dinosaurs and searching for bugs. Kyler is one tough warrior saying “because I’m brave and do my port, I don’t ever give up, because I’m KylerStrong.”

He is currently in treatment at Beverly Knight Olson Children’s Hospital in Macon, Georgia.

You can follow Kyler’s story on Facebook at @kylerwpike

Donate today to help cancer fighters like Kyler: https//www.acco.org/donate