Adrian was diagnosed with clival chordoma, a type of brain tumor, on January 21, 2021. He was 2.5 years old had a stiff neck for a couple of months, because of covid we only had virtual doctor appointments and we were told to monitor it. A couple of weeks later, he was unable to move his left arm. In the emergency department, they discovered a mass close to the brain stem. He needed immediate surgery for two consecutive days to resect the tumor. Post-op he was quadriplegic and had a tracheostomy for emergency airway and a gtube for supplemental nutrition. He recovered after 2 months from surgery and regained full mobility, except only limited head and neck mobility due to cervical bone fusion from tumor resection.
We have been struggling financially as we were originally a one-income household. Now we just rely on donations since my husband also had to take extended unpaid leave from work to care for our medically complex child and two other children. We have to trade off during weekly hospital stays because we are the only ones trained for his tracheostomy care and our two other children ( 6 & 7 years old) at home are not allowed at the hospital due to covid restrictions. They are also homeschooled due to my son’s compromised immune system.
Ruqaya was diagnosed with a brain tumor in May 2018. It was the most horrific news for all of us. Ruqaya was having bad headaches. We honestly did not think of it being a tumor because a simple headache Advil would cure them. The headaches kept getting worse. Her father took her to the emergency room and they gave her Tylenol and sent her home.
But a few days later the headache came back and this time it was even worse. We took her right back to the emergency room and got the news that crushed our world, a tumor. She had to have surgery right away because it was growing and was blocking fluids in her brain. She was flown to the Hospital for Sick Children in Toronto. She had brain surgery and it was successful, but the news got worse. We were told it was stage 4 cancer.
She had a very rare tumor and must undergo chemo and radiation for 2 years. The numbers they gave us were not good at all. We thought about it and prayed for a sign. We decided not to go with chemo as the numbers of her surviving were not good. We decided to take her on a pilgrimage, a more spiritual journey, so we did. We came back and in November 2018 we were told it grew back and in 2019 she had another brain surgery. It was successful but with some complications. So Ruqaya started her chemo and radiation journey on June 25, 2019.
Ruqaya has been through a lot, things no child should go through, but remains strong to fight this battle!
Alison was diagnosed with cancer when she was 11 months. She was perfect at her 6-month doctor visit. By 9 months, she was considered “failure to thrive” – unwilling to take breast milk from a bottle, not trying to make gross motor gains, and just cheerful to sit. Her PCP said to add in all foods (eggs, cheese, or anything to get her gain weight), start physical therapy, and to come back in 6 weeks. We did and she made minor progress. She developed a little eye twitch that I showed the doctor. After an MRI, we were at Boston Children’s Hospital for her first of many brain surgeries.
She lost all her vision in her left eye and her peripheral in her right. She is cognitively much slower than her peers and trying to catch up physically as well. Alison’s fight will never end. She has incurable brain cancer that we hope to just maintain to keep her quality of life as high as we can for as long as we can.
Alison is a joyful, friendly, positive child who lives life to the fullest. She is a 40 year older trapped in a little body meaning she’s mature way past her years. She is one of the kindest people I’ve ever had the pleasure to be around and she brings joy to those around her.
Molly is a Musical theater major at UNCG. She sings and dances and is a pediatric cancer advocate. She is super positive and that helps her recover!
Molly was first diagnosed in August of 2019 with Anaplastic Ependymoma. She had surgery and radiation. We thought she beat it but 6 months after being cancer-free, she had a recurrence and just had surgery.
She loves to give more than receiving. She is humble and we are still luckier than most!
She is silly! She is very shy at first – but once she opens up – she giggles and is a ball of energy. She loves being outside, playing, riding her scooter, playing dress-up… she loves shoes! Rylynn has the best smile and laugh.
Rylynn was diagnosed with a large brain tumor – called JPA. She had 7-hour brain surgery 4 days after her 2-month-old sister, had unplanned emergency surgery – finding out she has a hole in her heart – and had surgery to remove her right ovary.
She had one headache and we took a trip to the local ER. Then we were transported to Lutheran General after finding the tumor.
This had taught us to live our lives to the fullest, as you don’t know what is planned for your story. Life can change in a heartbeat!
Travis is a bright light, a beautiful soul, smart, funny, playful, loving, empathetic, retro, and fiercely loyal. He loves music, but not of his own generation. He loves classic rock from the ’60s – ’90’s. He loves to color and owns a vast collection of tie-dye and Grateful Dead shirts. He rocks a pair of red Chuck Taylor high tops. He also rocks a bow tie and vest. He has gorgeous long hair that he plans to donate. He is passionate about raising funds and awareness for pediatric cancer research. He planned to be a physician-scientist in the field of pediatric brain tumor, but he’s afraid his own brain tumor may make that impossible. He does plan to work at CHOP with kids with cancer in some capacity. He is warm and welcoming. He has a gentle strength that puts people at ease.
My son was healthy, athletic, and smart. I took him to the ER after a bicycle accident, thinking he had a concussion. He didn’t have a concussion. We accidentally found a brain tumor instead.
He has had three brain surgeries. He had two years of chemotherapy from ages 11-13. He’s been seeing a psychologist for seven years. He was diagnosed with clinical depression, acute anxiety, and PTSD when he was thirteen. He has chronic daily nausea and chronic daily headaches. He’s been through numerous tests and surgical procedures to find the cause, but after years, he’s still feeling crummy. Our finances were decimated and never got better. I’m a single mom.
Travis has taught me more about handling adversity with grace and dignity than I ever knew existed. He’s a dynamic and powerful young man with a bright future.
