Gold Ribbon Hero: Eva

Tag Archives: Medulloblastoma

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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.

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.

Eva’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.

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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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Creed’s Story

We would like to take a few minutes to share with you Creed’s story. Creed was diagnosed with Medulloblastoma just after his first birthday and courageously fought for his life through nearly a year of intense, difficult treatment. Unfortunately, the intensive treatment was unable to stop the spread of the cancer. Creed passed away on August 26, 2016, just one day before his second birthday. Yet Creed’s strength, his fighting spirit, and love of laughter live on: “Creed was the light of many of our lives. He inspired not only me, but so many others. He changed and impacted so many lives in just the short time he was given on this earth. After all, there is no footprint too small to leave an impact on this world that will last forever.”

The Diagnosis: Medulloblastoma

Medulloblastoma is a rapidly-growing tumor that develops in the cerebellum, the lower rear part of the brain responsible for critical functions such as balance and complex motor functions. Medulloblastoma is a sub-type of tumors known as PNETs, which develop in the immature cells of the central nervous system known as primitive neuroectodermal cells. Between 250 and 500 children in the United States are diagnosed with Medulloblastoma every year. Unfortunately, the disease is most aggressive in children, like Creed, who are diagnosed under the age of three.

Brain tumors in children are amongst the most difficult forms of cancer to treat due to their location in such a critical and highly sensitive area of the body. Standard treatment involves removing as much of the tumor as possible through surgery, then bombarding the cancer site with chemotherapy and radiation to kill any remaining cancer cells and prevent the formation and growth of new cancer cells. However, for the developing brain of the young child, the treatment can be nearly as devastating as the cancer itself with the potential for serious short- and long-term side effects. In fact, most oncologists will avoid or delay the use of radiation in children under the age of three because the risk of brain damage is so high. The options are gut-wrenching, and until more targeted, less toxic treatments can be developed, sadly limited.

The Gift of Laughter

Yet Creed faced the intense treatment—the many surgeries, the chemotherapy, and the pain—with smiles and laughter. “He could always manage to make everyone laugh no matter the circumstances.” And it is the memory of his handsome, smiling face and his infectious laughter that will carry his family through this very difficult time. “Creed is forever in our hearts. Until we meet again. Love and miss you, Creed baby.” Creed, and his family, are in our hearts as well. It is for them, and for all childhood cancer warriors, that we continue to dedicate ourselves to pushing for new, more effective, and less toxic treatments for all forms of childhood cancer.

About the American Childhood Cancer Organization

The 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, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, the 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.

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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:

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