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.
Callum is one of the happiest babies you could ever meet! You would never know he was sick by the way he acts. He is almost always smiling, showing his big goofy teeth and he is ALWAYS moving. He loves silly voices and will giggle and squeal if my husband or I pretend to be angry, which makes me nervous for the future! 😉 Callum loves meeting new people and is not shy in any way. Right now, his favorite things to do are cruise/crawl anywhere and everywhere, wiggle to music, open and close cabinets and doors, and throw things.
Our son has had a marked lack of appetite since birth but was hitting weight milestone until around 8 months when he stopped gaining weight. He then developed Nystagmus in his left eye at 11 months which led to our doctor’s visit and subsequent diagnosis of low-grade glioma on July 29th, 2020.
He has had multiple MRI’s, a brain biopsy and port placement, and weekly chemotherapy. Our son has a very difficult time having his port accessed for treatment which is very stressful for my husband and me.
Callum’s diagnosis has dramatically changed the focus of our lives. Our daily lives revolve around the health, safety, and comfort, of our son over everything else. We have canceled holiday plans to travel home to our families in order to ensure there is no interruption in his treatment or risk to his health. Due to our son’s weekly chemo appointments, I am not able to return to work as a teacher.
Declan is a spunky, rambunctious, free spirit. He loves art, puzzles, sprinklers, and water (we have an in-ground pool). He enjoys all things, Disney. He loves to run and jump. Loves music. He lives Fight Song. He loves dressing up as Elsa from frozen, or any superhero. Loves bikes and Kermit the frog.
Last year, Declan started having seizures. He had one day, and he quickly started having seizures up to 8 times a day. He was brought into Boston Children’s Hospital Emergency Room and less than 24 hours later we were slammed with the news that our son had an inoperable brain tumor.
Although it is considered benign, it has grown to show unwanted symptoms. We know that the tumor can not be removed due to its complexity and it would leave him functionless. This is very very rare for a 3-year-old. It has peaked interest in many neurologists and neurosurgeons, and they are teaming up together to figure out what it is and a solid plan of action, but back up plans as well.
He is getting chemotherapy, as well as being worked up for seizure surgery. At 4 years old, this is a lot to handle. He also has albinism which causes low vision.
We are strong and have proven to get through challenges in the past. Declan is a strong rock star who is gonna kick this thing’s butt!
Mya was 4 months old when she was diagnosed with a 4cm posterior brain tumor. Her tumor is so rare it doesn’t have a name. The doctor calls is an unclassified high-grade malignant brain tumor.
The belt was given to her by Roman Reigns. He is a WWE wrestler who came to OHSU Doernbecher for a make-a-wish child. He went around to all of the rooms and said hi to the families. This was during Mya’s 1st round of chemotherapy. Mr. Raines was in Mya’s room for quite a while and talked with us. He is such a nice guy, who also fought childhood cancer. Anyway he gave Mya this belt.
Eight months ago we weren’t sure she was gonna be here. This is such a huge milestone for our family and we are so happy to have these photos of celebration!
Theo is 7, and on March 3, 2018, he told me he had a goal. He wanted to take the training wheels off his bike. He said he would practice every day until they were off, so he could be a real biker.
That was interrupted a few days later after an eye exam at Nemours turned into an inpatient MRI of the brain at Wolfson Children’s Hospital and a diagnosis of optic glioma – a brain tumor that grows along the optic nerve. We learned the damage caused by the tumor was too extensive for surgical removal. He had already lost vision in his left eye and surgical removal would not reverse this. Further, the risk was too great to the optic nerve on the right. Theo began chemotherapy the week after surgery to implant a port.
Oh, and today when he got on his bike, he took off like Flash. He said he was in training – that’s how you become a real biker. Theo loves to learn magic tricks, play golf, and beat you in a game of chess.
We’ve had lots of chemotherapy treatments, port placement surgery, and have several big cancer planning / surgical evaluation appointments coming up. We have not had any shrinking and the tumor is continuing to grow. I’m a single parent and financially it’s been hard.
