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Gold Ribbon Hero: David Jr.

Tag Archives: Childhood Brain Tumor Cancer

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

UPDATE: May 21, 2021 – David Jr. battled DIPG since 2018 and this morning, David passed away.

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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.

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 here. Screen Shot 2020-01-28 at 8.29.00 AM

 

Why do some children develop brain tumors?

Why do some children develop brain tumorsAny time a child is diagnosed with a brain tumor or other type of cancer, the most obvious question many parents ask is “why”. What caused this child to develop a brain tumor? Unfortunately, there is no easy answer to this question. Scientists now believe that the vast majority of brain tumors in children are the result of random gene mutations but have no satisfying answer as to why a particular gene mutation occurred or why it led to the growth of a brain tumor.

Whether benign or malignant, a tumor grows when certain cells grow, divide, and replicate more quickly than normal cells and/or they do not die when they are aged or damaged. These abnormal cells then begin to build up in the brain, forming clumps or a mass, and eventually growing large enough to press on or cause damage to the healthy brain tissue.

So why do some cells grow, function, and die normally, while others grow abnormally and develop into a brain tumor? Scientists currently believe that these abnormal cells are the result of mutations (random changes) within the DNA in each cell. Mutations in oncogenes inhibit when cells grow and divide properly, while mutations in tumor suppressor genes prevent cells from slowing their rate of replication and prevent them from dying at the proper time. Because mutations are a natural part of the lifecycle of our cells—occurring frequently as our cells grow and divide over time—preventing or predicting these mutations is currently impossible.

What are the risk factors for brain tumors in children?

A “risk factor” is anything that increases a child’s risk of developing a brain tumor. As stated above, scientists believe that the vast majority of cases of childhood brain tumors are caused by random gene mutations. Gene mutations are a natural part of human biology and usually do not have a specific or identifiable cause. Therefore, there are very few known risk factors linked to the development of brain tumors in children, with two notable exceptions. Those are:

  • Radiation exposure: Exposure to large amounts of radiation has been linked to several types of cancer, including brain tumors in children. While low-level radiation exposure is an accepted aspect of today’s medical care (x-rays, for instance, for dental treatment or to diagnose a broken bone), the medical community goes to great lengths to protect children from high dosages of radiation exposure.

However, radiation therapy has proven to be an effective tool when fighting some types of cancer. While most oncologists will limit or avoid altogether the use of radiation when treating very young children, in some cases, the benefits of treating the immediate threat posed by cancer must be weighed against the potential risk of developing a brain tumor or other secondary cancer in the future.

  • Inherited genetic conditions: In a very small number of cases (less than 5%), children have an inherited genetic condition that might potentially increase the risk of developing a brain tumor. Although these conditions themselves are very, very rare, some have been linked to an elevated risk for brain tumors:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Von Hippel-Lindau disease
  • Tuberous sclerosis
  • Gorlin syndrome (basal cell nevus syndrome)
  • Li-Fraumeni syndrome
  • Turcot syndrome
  • Hereditary retinoblastoma
  • Cowden syndrome
  • Rubinstein-Taybi syndrome

 

Can we do anything to prevent a brain tumor?

Unfortunately, all too many parents—after hearing that their child has been diagnosed with a brain tumor—feel an overwhelming sense of guilt. Many wonder whether this diagnosis is somehow their fault, or whether they might have been able to do something to prevent this diagnosis. However, any oncologist will assure these parents that there is absolutely nothing they could have done to prevent their child from developing a brain tumor. Brain tumors in children are not believed to be linked to any environmental factors or lifestyle choices (with the notable exception of radiation exposure noted above); instead, they are most likely the result of random and uncontrollable gene mutations.

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: