Brain Tumors in Children

Posted on March 31, 2020 by American Childhood Cancer Organization

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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Gold Ribbon Hero: Grayson

Posted on March 30, 2020 by American Childhood Cancer Organization

Meet Grayson, a 10-year-old brain tumor and spinal cord tumor survivor! Read on for his inspiring, five-year battle and how he persevered. Grayson grh

In October 2014, Grayson was a normal four year old boy – he loved playing ball, legos and being a normal kid. He started developing alarming symptoms like lethargy, dizziness and vomiting. Grayson was rushed to the ER by his parents and after much testing, it was revealed that he needed to be life flighted to Minneapolis Children’s Hospital. His brain had to be drained immediately because the pressure almost killed him. Six days later the neuro-oncologist gave the diagnosis to his parents. “This was one of the hardest days of our lives. We were told our spunky, smart, ball-loving, best squealer, four-year-old son had brain cancer: grade 2 diffuse astrocytoma (thalamus area), which is located in the middle of his brain, and it was inoperable.”

Options were limited for Grayson and included radiation treatment with chemotherapy or do nothing. He completed 30 rounds of radiation treatment without sedation teamed up with oral chemotherapy, MRIs and determination.

Nearly three years later, Grayson’s medication was switched. Grayson and his family traveled from the University of Minnesota Masonic Children’s Hospital to Children’s Hospital of Colorado. His new neuro-oncologist suggested taking him off of his medication which meant he was currently off of all cancer fighting drugs. He was not participating in radiation, chemotherapy or mekinist for 19 whole months. Two years later, a routine 3 month MRI revealed there was a very small spot contrast enhancing region in the original mass. Three months later, the hot spot was still present but changing on the MRI. It was decided in July 2019 that Grayson needed to be put back on Mekinist. In November 2019, Grayson was taken into surgery with “Rosa the Robotic Arm” to conduct a needle biopsy and thermal ablation.

In Grayson’s most recent update, he has been healing well from his brain surgery in December and his hot spot is reduced. According to his mom, Chelsey, “We are not dealing with grade 4, and the “hot spot” that was becoming a problem from January 2019 to November 6th has been thermally blasted. They will continue to watch Grayson closely (3 month trips to Denver for MRIs).”

Grayson loves legos, hot wheels and playing with his siblings and friends. His mom said he is the best hugger!

Follow Grayson’s Journey here: @thepoptabkid

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

Donate to help kids like Grayson, because kids can’t fight cancer alone!: https://www.acco.org/donate/

Gold Ribbon Heroes: Tristen, Caison & Carter

Posted on March 23, 2020 by American Childhood Cancer Organization

Meet the Rush family warriors: Tristen, 6, Caison, 3, and Carter, 8 months old. Each of the boys have bravely fought retinoblastoma at a very young age. grh tristen Caison and carter copy

When Angie Rush was an infant, she was diagnosed with retinoblastoma. She fought hard, survived and now has three young boys with the same diagnoses. ACCO was lucky enough to speak with the Rush family and get some insight into their unique story.

After spending four weeks in the NICU, Tristen’s parents Angie and Aaron advocated to have his eyes checked which revealed that he had retinoblastoma. “When he was diagnosed, you always hope for the best and assume everything was okay. It was really heartbreaking for us, even though my wife went through it when she was younger – it was unknown. She went through it as a baby, so when your son has it, it was kind of a whirlwind and you don’t know what to expect. It was overwhelming and heartbreaking and for a brief moment you have sadness and crying and then it turns into determination” said Aaron. Their son Caison was diagnosed at just two days old after the parents urged doctors to check his eyes after Tristen’s diagnoses. For the first six months, Carter was tumor free but in January of 2020, doctors found several tumors in his eyes. “We thought he was free and clear and that he wouldn’t have it – but we just pushed through the sadness to tackle this cancer,” said Aaron.

Each of the boys’ treatment plans have been very similar. They have all had monthly eye exams, chemotherapy for six months, laser surgery as needed and evaluations under anesthesia. The chemotherapy has caused minor hearing loss in Tristen so he wears hearing aids. Caison currently has a small vision deficit in one eye which doesn’t seem to slow him down.

According to Aaron, the boys have been minimally affected by their diagnoses. Tristen is currently in survivors clinic status and has once a year eye exams. He is extremely personable and loves to make people laugh. He is funny, smart and full of energy. He loves to draw, playing outside, playing sports, helping around the house and swim, among other hobbies. Caison is in observation status and gets eye exams every three to four months. He is very friendly but shy. He loves to show people new things, playing in the dirt, being outside and making up funny stories. Carter is currently on active chemotherapy treatments and has monthly eye exams. He is a happy baby who smiles at everyone! He can roll over, sit up and is working on crawling.

Please help ACCO send well wishes to the Rush family!

To learn more about retinoblastoma, please visit: https://www.acco.org/retinoblastoma/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

To donate to help kids like Tristen, Caison and Carter, please visit: https://www.acco.org/donate/

Gold Ribbon Hero: Molly

Posted on March 16, 2020 by American Childhood Cancer Organization

Meet Molly, a 19-year-old currently battling stage 3 anaplastic ependymoma. This warrior is currently a freshman at the University of North Carolina Greensboro studying musical theater. grh molly

A week before leaving for college, Molly experienced debilitating headaches. She went to the emergency room and was sent home with benadryl and a migraine diagnosis. After being asleep for 40 hours straight, Molly had an MRI which revealed a tennis ball size tumor. On August 15, 2019, Molly was diagnosed with stage 3 anaplastic ependymoma. That same day she was meant to move into her college dorm. Her mom said it was a complete shock, while Molly was just worried about going to school.

Treatment began almost immediately with a total resection of the brain to remove the tennis ball tumor followed by months of rehab and seven weeks of proton therapy. In January she had her first post op MRI and will keep having scans until officially cleared.

Music has been instrumental in Molly’s recovery. Three weeks after surgery, she danced for physical therapy. Within six weeks, she was on stage performing at a benefit. She wants people affected by cancer to “let yourself have bad days but know that you are strong enough to have good days too. Let people envelope you in love, because you aren’t doing this alone.”

unnamed Molly is an advocate for childhood cancer and has made some very exciting public appearances. She sang in front of 20,000 people at the Hockey Fights Cancer Night at the Blue Jackets and raised awareness at the Governor’s Mansion. In addition, she helps to raise awareness for pediatric cancer research by committing to ride a bike for 100 miles with her sisters.

Mighty Molly has been determined since day one of her diagnosis. She is a performer, singer and dreamer. She hopes to be on Broadway or a cruise ship to entertain the masses. Only six kids were chosen at UNCG for her musical theater and the spot was saved for her when she was unable to attend her first semester. Help ACCO send well wishes to Molly and her family.

To learn more about childhood cancer: https://www.acco.org/blog/childhood-brain-tumors-staging-and-prognosis-factors/

To donate because kids can’t fight cancer alone: https://www.acco.org/donate/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

#childhoodcancer #childhoodcancerawareness #awareness #goldribbonhero #themightymolly

Gold Ribbon Hero: Lilliana

Posted on March 6, 2020 by American Childhood Cancer Organization

Meet Lilliana, a survivor of Burkitt’s lymphoma! grh lilliana

Lilli loves to draw and paint, and is currently looking at colleges to pursue a career as a social worker.

Lilli was diagnosed with thyroid cancer at the age of 13 on September 13, 2013 and was understandably scared and upset. Shortly after her initial diagnosis, the family got a call saying it was much more serious saying they needed to pack their bags for a two week stay in the hospital. Lilli was diagnosed with stage 4 Burkitt’s lymphoma.

Treatment was intense for Lilli, she endured seven long months of chemotherapy and spinal taps. She had a port placed in her chest and shortly after had to have it removed due to a severe infection. “I faced many challenges during my treatment both physical and mental but during the whole time I never let myself get a bad attitude about any of it.

“Personally, as a 13-year-old girl, my biggest trouble was feeling confident without my hair. During that time, I did not feel pretty and the only pretty thing about myself was my hair; but, I overcame it and learned that I was beautiful no matter what” said Lilli.

On April 8, 2014 Lilli was cleared for remission and in June of 2019 she was declared out of remission! She is now 19 and attends the survivorship clinic at Pittsburgh Children’s Hospital for check ups at least once a year. Please join ACCO in sending Lilli well wishes in her future endeavors.

Lilli was featured in a Buzzfeed article about her journey. Read her firsthand story here: https://www.buzzfeed.com/lillianabailey99/childhood-cancer-gmzl5dpr8
Learn more about childhood cancer here: https://www.acco.org/types-of-childhood-cancer/

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

Gold Ribbon Hero: Natalie

Posted on March 2, 2020 by American Childhood Cancer Organization

GRH_ Natalie

Meet Natalie, a 12 year old aspiring astronaut who wants to become the first woman to walk on the moon! This courageous and determined little girl is a wilm’s tumor survivor!

At three years of age, Natalie was diagnosed with a bilateral Wilm’s tumor. Symptoms started with a swollen stomach and developed into vomiting and constipation. Her pediatrician ordered an x-ray of her abdomen and initially said it was stool in the images. As a precaution, labs were drawn which came back showing Natalie was severely anemic. She was sent home and ended up in the Cincinnati Children’s ER that night. The family was in the ultrasound room for more than an hour before receiving the diagnosis.

Natalie was immediately admitted into the ICU and chemo started within a few days. A month later Natalie was rushed into emergency surgery in septic shock due to complications and as a result, the tumor and her right kidney were removed. After two months in the hospital, Natalie was released. Four months after the initial diagnosis, Natalie had surgery to help salvage her left kidney however doctors had to remove it and place her on dialysis. Over the next year, she was put under daily chemo and dialysis treatments. In October of 2012, Natalie received a life saving kidney transplant from a family member.

Today, Natalie is a normal 12 year old who loves spending time with family, drawing and participating in drama club. She was officially cured in October 2016 and is very thankful to be a survivor. She still has to go in for labs and doctors visits, but according to her mom Tracy, “she handles all of that like the pro she is.”

Please join ACCO in sending well wishes to the young astronaut to-be, Natalie!

For more information about Wilm’s tumors, please visit: https://www.acco.org/wilms-tumor-and-other-childhood-kidney-tumors/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

To donate to help kids like Natalie: https://www.acco.org/donate/

Gold Ribbon Hero: Naomi

Posted on February 24, 2020 by American Childhood Cancer Organization

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/

Gold Ribbon Hero: Sal

Posted on February 17, 2020 by American Childhood Cancer Organization

Meet Frank “Sal,” a 16-year-old sports enthusiast and Lumineers fan. At the age of 14, Sal was diagnosed with germ cell testicular cancer and is currently in remission!

Sal was complaining of a swollen testicle after a bike accident and his parents took him into the doctor’s to check it out. Instead, they were sent straight to the emergency room after the doctor suspected it might be ruptured. Within ten minutes, the doctor informed Sal and his parents that it was testicular cancer. Initial impressions were scared and upset but Sal was determined to beat it.

His treatment was accelerated by receiving a total of 28 chemotherapy treatments. The treatments were rigorous; both in and outpatient and once the initial 24 treatments were complete, they were sent for four additional outpatient treatments. “He went through treatments like a champ, now he can help other children to see that they can get back to normal,” his mother, Elizabeth said. During his journey, Sal had abdominal surgery to remove a mass from his kidney where his cancer had spread.

Elizabeth remembers, “I was diagnosed two years ago with breast cancer and I am currently 1.5 years in remission. I thought I handled my diagnosis and treatments like a pro until I watched my son go through this. He blew me away. He never complained, sat in the hospital for six days in a row, 24 treatments over seven weeks and still smiled for pictures. When he lost his hair, I cried, not him. He has been unbelievably strong through this.” Sal

During treatment, Sal was not able to join the football team, however he has joined the track team and already earned second place in a conference for his long jump. According to his mom, “Frank is the most giving kid, he plans to advocate that you can make it and do bigger and greater things even when you feel like rock bottom.”

To learn more about childhood cancer: https://www.acco.org

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

Council of State Governments Magazine “Capitol Ideas” features ACCO

Posted on January 28, 2020 by American Childhood Cancer Organization

As a new partner member of the Council of State Governments, ACCO’s #WhyNotKids State Advocacy Initiative is highlighted in an article in Capitol Ideas detailing our leadership and solutions for overcoming the disparity between adult and #childhoodcancer research funding. Capitol Ideas is a magazine of CSG sharing ideas for model legislation and top priorities for states across the nation. Special thanks to CSG for featuring ACCO. Read the full magazine here. Screen Shot 2020-01-28 at 8.29.00 AM

Gold Ribbon Hero: Mady

Posted on January 27, 2020 by American Childhood Cancer Organization

Meet Mady, a courageous 13-year-old dancer with a love of fashion and makeup. ACCO first got in touch with Mady’s mom, Ashley in February of 2019 after Mady met Randy Fenoli at Kleinfeld in New York City. We’ve been following Mady’s story ever since. 46520356_10204986397936700_5712957268534755328_o

This month Mady relapsed and this time it was evident in her spine. She is beginning cycles of radiation in early February in New York.

Mady was first diagnosed with neuroblastoma at the age of 8 years old. According to Ashley, “Mady was playing softball and rounded a base. She hurt her ankle which caused pain throughout her body. I knew something was wrong but didn’t know the extent.”

“It was the scariest day of our lives. The doctor sat us down and said her gut feeling was right – they had found a tumor on Mady’s left adrenal gland.” The doctor ended up doing more scans and discovered neuroblastoma. Mady was scared and confused and of course, Ashley was terrified of the outcome. FB_IMG_1577455932435

Treatment started shortly after with several rounds of chemo and radiation which made Mady extremely sick. She was devastated when she lost her hair but she kept fighting. Later, it was discovered that Mady’s body was resistant to the chemo so they quickly switched to two different immunotherapy treatment and two mibg radiation therapy treatments. Mady has had two ports placed, had her left adrenal gland removed and endured biopsies of skull lesions.

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After two years of treatment, the cancer went dormant but relapsed in January of 2018. In March of 2018, Mady and her mom traveled to New York twice monthly to begin a trial treatment which cleared her of disease after 13 rounds of immunotherapy. In August of 2019, she had her first set of clear bone scans in almost four years.

Mady’s attitude has been determined throughout treatment saying “it’s okay, I’m going to beat it!” From day one she had faith that she was going to beat the disease and has persevered when nothing was working. You can follow Mady’s story here: https://www.facebook.com/groups/1038894766152004/

Please help ACCO send well wishes to Mady and her family by commenting on this post!

To nominate your Gold Ribbon Hero click here.

To learn more about neuroblastoma, click here.

ACCO provides information, resources, support, awareness and advocacy to families who are affected by childhood cancer. Donate today to help the littlest warriors.

UPDATE: May 22, 2023, ACCO is sad to announce that on May 19, 2023, Mady passed away while surrounded by her family.