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Gold Ribbon Hero: Eva

Tag Archives: Childhood Brain Tumors

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Meet Eva, a forever 7 year old medulloblastoma warrior. Eva was a girly girl who always had her nails painted, loved playing with her brother Paddy and lived for ‘smuddles,’ a hug and squeeze from the ones she loved.

Eva was co-raised by her aunt, Tracy and her grandmother, Geraldine along with Tracy’s husband, Alan and brother, Paddy. 

When Eva started to become agitated and lose her appetite, her family took note. When her uncle got married, Eva was very quiet which was very uncharacteristic of her normal sassy self.  Two weeks later, Eva experienced a seizure while drinking milk. The seizure caused her to be unaware of her surroundings or her family in the room. When Geraldine called the doctor, they suggested just giving her an over the counter ear infection medication and said if things progressed to take her to the ER. Thankfully, they were able to fit her in on the same day and checked her ears. Eva was sent home with pain relief medicine.Screen Shot 2020-05-28 at 8.30.24 AM

Days before she was diagnosed, Eva started walking funny around the house and complaining of neck pain. She started demonstrating a head tilt and after many months of complaints and doctors visits, Tracy took matters into her own hands. After Eva had another seizure, Tracy took Eva back to the office and demanded to see a different doctor.  This time, the doctor looked into Eva’s eyes and knew something was wrong. She excused herself from the room and called the emergency room to tell them she had a patient coming down with either a viral brain infection or medulloblastoma. The doctor noticed a very heavy buildup of fluid behind her eyes which was alarming. When the doctor came back into the room, she told the family she suspected it was a viral brain infection and that she needed an intravenous antibiotic. The doctor sent Eva in for an MRI and on October 3, 2012, Eva was diagnosed with stage 4 anaplastic medulloblastoma.

At the time of diagnosis, the doctors said they found a “mass” on Eva’s brain. The thought of “cancer” never entered Tracy’s brain and she thought it was benign. “They told us there was a mass on her brain. And you know what’s really funny about that time is when they said there was a mass on her brain, I still didn’t think it was cancer. I genuinely didn’t even know that children get cancer, isn’t that ridiculous?”

Five days after diagnosis, Eva had brain surgery to remove the golf ball size tumor. During her surgery, doctors noticed that the tumor had spread around her head and down her spine which they couldn’t touch. She was considered to be stage four at that time and was given a 30% chance of survival. During her 12 hour operation, Eva needed a blood transfusion and was watched a few days afterwards to see if she needed a shunt placed. Unfortunately she developed an infection in her brain and recovered quickly.Eva 2012 Pose

Eva was the second child in Ireland to receive the Milan protocol for the aggressive treatment of medulloblastoma. From reports, it was promised to give great results. She received a total of 12 months of chemotherapy, 6 weeks of radiotherapy twice daily and two stem cell transplants. As a result of treatment, she had nerve damage that would ultimately confine Eva to a wheelchair.

In June 2013, active treatment was complete and Eva was considered to have no evidence of disease. The next month however, Eva started to fall for no reason. Tracy called the oncologist who brought her in for another MRI. Another mass was found on her brain but not in the same spot. They found three particles but doctors did not think it was cancer. By October of 2013, Eva was unable to walk. She had lost all function and reverted into a baby. She had no control over her body, wore diapers and could not feed herself. Eva was still mentally and intellectually a four year old but unable to control her body.Screen Shot 2020-05-28 at 2.42.43 PM

When Eva lost her hair she looked at Tracy, gasped and said “look Trace, can you put that back in?!” Tracy took the hair and hid it behind her back and told her a “tall tale” about how some boys and girls hair go on a special adventure and that Eva’s hair is going on an adventure of its own which sparked an idea in Tracy. From then on, she’d tell Eva silly tales of adventures that “Hair” would go on, which became a character in their household.

Eva’s dream was to meet a princess, specifically Cinderella and for her Make-a-Wish, she was able to meet Cinderella in Disneyland in Paris. When she finally met Cinderella, Eva was completely speechless and in “awe” of her. That evening, the family was even able to have a dinner with Cinderella.

After missing so much school, Tracy decided to send Eva to a specialized school which would help with inhouse physical and occupational therapy among other specialized treatments. The school was almost 60 miles away but Eva loved it. She enjoyed the bus ride and would tell  her family about her adventures every day. She would get her aide to help her play pranks on the principal and give silly nicknames to the bus driver.IMG_9749

Eva was put into a program at Stoke Mandeville hospital which helped her spine and brain. The family changed their life completely by changing their eating habits and supporting her immune system with the most natural ingredients. She seemed to be making good progress and even learned to feed herself again. At this time, Eva was even able to stand for 20 minutes with a standing frame.

In October 2015, Eva had seemed agitated again and by the end of October she complained of a sore neck again. She would cry at the drop of a hat and did not seem like she was in a good place. At her next doctor’s appointment, Tracy told the oncologist about her neck pain and was encouraged to wait for an upcoming MRI. Eva’s family was already aware that if she had a relapse that there was no more treatment available to her and if the treatment didn’t work, the options were to participate in a trial or to simply do nothing.

“In that entire three year period this was the only appointment I could not go to. I could not hear what the guy would say, so I sent my husband. I knew in my gut that something was wrong. I texted my husband throughout the day asking for updates. Now looking back, it was a coy way of saying nothing, but to me – it looked like hope and I took it. He responded with ‘all was well, the doctor wanted to see her again and we are on our way home’ and I didn’t think anything of it” said Tracy.

The oncologist said that there was a new trial that had existed however he felt that Eva had enough treatment and suggested morphine. Heartbroken, Tracy and her family decided to bring Eva home and keep her out of school in the middle of November. Unfortunately, Eva gained her angel wings in November of 2015.

IMG_9801Eva’s legacy lives on in the series, “Eva’s Adventures,” which is Tracy’s passion project. She wanted her legacy of helping people to live on and has gone on to open up a charity of her very own and a park which features a “smuddle” park bench. They have held various fundraisers which has enabled the family to donate funds to other families in need and for cancer research in Ireland.

It should be noted that in late 2014 the oncologist that initially introduced Eva into the Milan protocol presented Eva’s case at a conference.  He met several other doctors that had the same experiences with the treatment. Since then, the Milan protocol is not being utilized in Ireland. 

Follow Eva’s Adventures and Tracy on social media below.

Learn more about Medulloblastoma by clicking here.


 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
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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.


Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
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Brain tumors in children make up about 15% of pediatric cancers. They are the second most common cancer in children, after childhood leukemias.

The most common brain tumor in children is medulloblastoma. There are many other that affect children, including astrocytomas, gliomas, ependymomas, germinomas and more.Brain Tumor child

Symptoms of Brain Tumors in Children

The symptoms of brain tumors in children vary greatly and depend on the size of the tumor and where it is located. They can include:

  • Seizures
  • Nausea and vomiting
  • Problems with walking or balance
  • Changes in personality
  • Aggression and irritability
  • Weakness or lack of energy 
  • Learning difficulties
  • Memory loss
  • Problems with hearing, vision and other senses
  • Pain, especially back pain
  • Headaches, especially early in the morning or in the middle of the night

Because these symptoms are so variable and can be caused by many other things, brain tumors are often misdiagnosed at first, and it can take a long time for the right tests to be done to discover and identify the brain tumor.

Prognosis for Children with Brain Tumors

The prognosis for children with brain tumors depends on the type of tumor, its grade (a number that indicates how abnormal the cancer cells are and how fast they are likely to grow and spread), its size and its location.

For some tumors, especially those that can easily be removed by surgery, the prognosis is good. There are other tumors that very few children, or none at all, have ever survived.

Even when children do survive, they are often left with lifelong effects from the tumor and its treatment, including learning difficulties, growth problems, paralysis and more.

Treatment for Brain Tumors in Children

Like the prognosis, the treatment of brain tumors depends on the type, grade, size and location of the tumor. Treatment often involves a combination of chemotherapy, radiation and surgery.

Treatment for brain tumors is challenging because the brain is a crucial and highly sensitive organ, and it’s difficult to target treatment at the tumor without harming important parts of the brain.

Removing the brain tumor by surgery is ideal, but not always possible. Sometimes the tumor is too widespread and mixed with other healthy tissue, and sometimes surgeons won’t be able to get to the tumor without damaging other critical parts of the brain.

It’s also very difficult to get chemotherapy to reach the tumor because of the blood-brain barrier, a layer of cells that protect the brain from anything foreign — including most drugs — in the blood. 

Because treatment options are limited, some parents choose to enroll their children in clinical trials.

Naomi’s Story

Naomi was just a normal 8-year-old girl until one day she collapsed in school and couldn’t remember her name. After several trips to the hospital, her parents finally got the diagnosis they never could have fathomed: stage 4 pinealoblastoma, a brain tumor of the pineal gland. It had already spread to her spine.

Naomi’s treatment plan is tough: she’s already had four brain surgeries, and she’s undergoing chemotherapy and 30 proton radiation treatments.

Naomi’s a little girl with a big heart, and she keeps her spirits up by helping the other children in the hospital. Last year, she gave away her Halloween candy to kids who couldn’t go trick-or-treating, and now she’s starting a teddy bear drive.

You can help kids like Naomi by making a donation to the American Childhood Cancer Organization. Your gift helps provide educational resources and support programs for children with cancer, survivors, and their families, as well as raise awareness about childhood cancer and the need for more research.

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Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine.  “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

Follow Naomi’s story here: https://www.facebook.com/naomisfight/

To learn more about childhood cancer visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/

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

 

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

 

About Childhood Brain Tumors

Childhood Brain Tumor Cancers Detection DiagnosisAfter leukemia, brain tumors (including spinal cord tumors) are the second-most common type of cancer in children, accounting for about 25% of all childhood cancer diagnoses. Brain tumors begin within the delicate and complicated tissues of the brain or the cerebrospinal fluid (as well as the spinal cord or central nervous system, as these tumors are usually classed with brain tumors in children). When dealing with brain tumors in children, oncologists rarely differentiate between benign (non-cancerous) or malignant (cancerous) tumors; all tumors in the brain can be life-threatening whether technically cancerous or not. Instead, oncologists usually focus on how fast the tumor is growing, how quickly or easily it may spread throughout the brain or spinal cord, and how easy the tumor is to remove completely.

Types of brain tumors “common” in children include:

  • Gliomas: a general term for a group of tumors that begin in the supporting cells of the brain. Gliomas account for about 50% of all brain and spinal cord tumors in children. Examples include astrocytomas, oligodendrogliomas, ependymomas, optic gliomas, and brain stem gliomas. Brain stem gliomas themselves account for about 10-20% of all brain tumors in children. Because they often grow diffusely throughout the brain stem, “diffuse midline gliomas” (such as diffuse intrinsic pontine gliomas, or DIPGs) remain very difficult to treat.
  • Embryonal tumors: accounting for about 10-20% of all brain tumors in children, embryonal tumors usually begin in the earliest forms of nerve cells and therefore are more common in younger children. The most common type is medulloblastoma, but other forms of embryonal tumors include medulloepithelioma, atypical teratoid/rhabdoid tumor, and embryonal tumor with multilayered rosettes.
  • Pineal tumors: these tumors begin in a small gland in the middle of the brain—the pineal gland—and are very difficult to treat. The most common type of pineal tumors are pineoblastomas.
  • Craniopharyngiomas: about 4% of all brain tumors in children are these slow-growing tumors which begin between the pituitary gland and the brain itself. Because they often press on the pituitary gland, the hypothalamus, and/or the optic nerves, they can be very difficult to remove without impacting the child’s vision and/or hormone balance.
  • Mixed glial and neuronal tumors: these types of tumors, including dysembryoplastic neuroepithelial tumors and gangliogliomas, are generally slow-growing and have a fairly good prognosis when treated with surgery and potentially radiation.

Childhood Brain Tumors: Detection and Diagnosis

Unfortunately, as with all childhood cancers, there is no way to “detect” a brain tumor without formal diagnostic testing. In most cases, detection and diagnosis happens only after parents, guardians, teachers, or others close to the child start observing unusual medical symptoms such as frequent headaches, nausea and vomiting, vision problems, balance problems, or seizures. Because many of these symptoms are commonplace, a pediatrician may only suspect a tumor if symptoms continue over time or worsen, or in the case of seizures appear very suddenly.

Should your child’s pediatrician suspect the presence of a brain tumor, he or she will recommend a visit to a specialist, who will conduct a series of diagnostic tests to determine if a brain tumor is present. The first diagnostic test is almost always an imaging test, usually an MRI. Using a combination of radio waves and strong magnets, an MRI can create a series of detailed images of the brain without involving radiation (which is extremely damaging to the delicate brain tissue of children, especially young children).

While an MRI or other imaging test can indicate the presence of a tumor or other abnormality, a final diagnosis usually must be made through a biopsy. A biopsy involves removing some or all of the tumorous tissue and examining it under a microscope. In some cases, a biopsy may be done simultaneously with surgery to remove the entire tumor, or it may involving only removing a piece in order to determine the appropriate course of treatment. However, in some cases, the tumor may be located in such a sensitive or difficult-to-reach area of the brain, that a physical biopsy is not possible; in these cases, diagnosis must be made on the results of imaging tests.

Once the biopsy has confirmed the presence of tumor and identified its type and grade, your child’s oncology team will work with you to determine the best course of treatment for your child.

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: