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Gold Ribbon Hero: Evan

Tag Archives: brain tumor awareness month

 

Meet Evan, an 8 year old DIPG warrior.

When Evan started demonstrating balance and speech difficulties accompanied by headaches and lethargy, his parents took notice. They took him to the pediatrician who advised them to take him to the emergency room. An on call doctor told the family that night that Evan had a brain tumor, but couldn’t give any other information. The next day, Evan was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. “We were told he had about nine months to live.” 

Treatment started immediately and to date, Evan has undergone three separate rounds of brain stem radiation, participated in two clinical trials and had a brain biopsy. 

Evan loves legos and baseball, reading and spending time with friends and family. “”We are extremely grateful that Evan has responded so well to radiation. He is almost three years post diagnosis, which is not common. Evan was able to go back to school and play sports for over two years. This past fall, he started having increasing symptoms and is now on hospice care.” 

Currently, Evan is stable but on hospice care. He is no longer able to walk, communicate well or eat solid foods. 

UPDATE: On June 10, 2022, Evan passed away. 

Donate to help kids like Evan, because kids can’t fight cancer alone!®

Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month and May 17 is DIPG Awareness Day. 

 

Meet Elin, a 6 year old glioblastoma warrior.

In December of 2021, Elin started developing evening headaches and intermittent nausea and vomiting not associated with diarrhea. On the day of her school Christmas party, Elin told her mom she didn’t want to go and that raised a red flag to her mother. Elin’s mother, Elizabeth took her to the emergency room where they ran tests. “They asked me to talk privately in a consultation room and told me the news that no one ever wants to hear.” 

Elin was diagnosed with glioblastoma just eight days before Christmas. “On one hand we felt relieved for a reason for her headaches, but disbelief/shock and overwhelming sadness for the tumor diagnosis and fear for the future.” Her diagnosis showed a devastating pathological tumor which required traveling to different cities for treatment. She’s endured two craniotomies, a port placement, many MRI’s, radiation and chemotherapy. 

Through her treatments, “Elin has not really complained. She was having headaches more consistently prior to her diagnosis but we didn’t fathom the severity. She recovered so well from surgery given how ill she was. She has never questioned why we have done all of the radiation treatments and oral medications. She just knows that we love her and want her to get poked and prodded. She trusts us in this. She has needle and band aid phobia but endures the discomfort and manages to be happy every day.” 

Elin enjoys running and singing. According to her mom, she secretly loves rap music. She is happy to eat a hamburger every day and loves to travel. Currently she is receiving oral chemotherapy agents in a clinical trial for the next 18-24 months. 

Donate to help kids like Elin, because kids can’t fight cancer alone!®

Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month. Learn more by clicking here.

 

Meet Caden, a 9 year old pineoblastoma brain tumor survivor.

In the fall of 2019, Caden started suffering from vomiting and headaches. “We thought he just had a stomach bug because he wasn’t feeling well for a few days. He woke up one morning in so much pain so we took him straight to the emergency room. The doctor immediately did a CT scan and saw a brain tumor. We were transferred to a different hospital where they got him on the schedule for his first surgery.” Caden was 7 years old when he was diagnosed with a pineoblastoma brain tumor. The diagnosis left the family shocked, sad, terrified and speechless.

During his journey, Caden had several surgeries during his journey including a full tumor resection, third ventricular bypass, biopsies, eye surgery and port placement and removal. He completed 15 days of radiation to the brain and spine and 15 days to the brain. Caden completed four cycles of chemotherapy. During treatment, COVID limited the visitors and left Caden feeling very isolated. “We, along with the rest of the world, were completely isolated. Not just isolated from our family and friends, but isolated from our home and safe place. Caden went four months without seeing his brothers. It was just awful. He would cry at night, not because he felt terrible, but because he missed his brothers. He was a great support to his friends at St. Jude.” One friend’s mother even said that Caden saved her son’s life since he too was away from siblings for a long period of time. 

“Caden’s treatment is over, hopefully forever. As of right now, we travel to Memphis every four months for follow up appointments and scans.” Caden enjoys playing with friends and especially his brothers. 

Donate to help kids like Caden, because kids can’t fight cancer alone!® 

Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month. Learn more by clicking here.