Lilly loves the color purple, glitter, her brothers, and cooking. She has just started listening to Taylor Swift and playing with Legos at the hospital. She has gone from an outgoing, smiling little girl to a very reserved little girl. This has definitely changed how she approaches people and situations.
Lilly had reading problems in school and our pediatrician said that there was nothing wrong with her eyes, so she was diagnosed with ADD. I felt she didn’t have ADD.
We moved due to work and Lilly was swimming a lot in our transitional housing (hotel) when she was having headaches and fluid behind her ear. We went back to her old pediatrician and they said it was swimmer’s ear.
Once we got into our new house, Lilly was having headaches and mood changes. We took her to a new pediatrician and was told she had allergies. The medication didn’t work and Lilly’s eye starting turning in. We took her to the optometrist who said her issues were not eye related but something medically related.
We immediately took her to Phoenix Children’s Hospital and she was diagnosed with a brain tumor and hydrocephalus. This started our cancer journey and she has already had a recurrence of her tumor and a second brain surgery.
She has been such a strong little girl through so many procedures! Time is split between the hospital and home so Lilly and I have missed a lot of family time. Her brothers have given her some normalcy through this tough fight.
Jay is a fun-loving 14 year old who loves everything about video games…all of them! Jay was 13 years old when he was diagnosed with brain cancer, called Medulloblastoma. He was having headaches and vomiting and we took him to the emergency room in our home town. He was taken by air ambulance to a bigger hospital that was capable of performing the surgery he needed to remove the tumor. He had his first 9-hour brain surgery in North Carolina.
We made the decision to take him to St Jude in Memphis for treatment. Once we got there his team decided he would have another brain surgery to remove what was left of the tumor. He had another 8 hour surgery at a children’s hospital in Memphis.
He then had 30 proton radiation treatments, the first 17 to his entire brain and spine and then 13 to just the tumor bed. At that point we were able to go home for a 5 week break.
He is now in the middle of his course of chemo, with three rounds down and four rounds to go. Each round of chemo averages 28 days. He begins his fourth round on Saturday.
While it has been very difficult to have our family temporarily separated for his treatment we are thankful for many things throughout this process. The support of our family, friends, and community has been amazing. The care he has received at St.Jude and the kindness and care of the people who work there have been beyond what we could have imagined. We have also met some wonderful people in Memphis and we have felt very welcome here.
Jay is the strongest person I have ever known and has had such a positive attitude throughout all of this. Despite his treatments he participates in school, physical therapy and occupational therapy at the hospital on a regular basis.
Ty was diagnosed Sept.1st of 2016 with Medulloblastoma. The only symptom he had beforehand was irritability. Then he had concussion like symptoms in a soccer game that led us to ER.
Ty had surgery, radiation, and chemo and is in a St.Jude clinical trial. He ended treatment last July and has scans/treatments every 3 months to monitor changes in tumor. So far- all staying the same.
Cancer changed our life so much! I stepped away from work for a year and lived in Stanford with Ty while the rest of the family (brother, sister, and husband) stayed in Tahoe. This past year, it has been constant physical therapy, behavior therapy and many days of not going to school. All 3 kids are in a charter school so it is flexible and we can do independent study when needed. I lost my position and only work part time now. My husband has to work overtime to pay bills.
Ty is brave and wants to make a difference to others. He’s pondering of writing a book to share his journey.
Zak likes being goofy and dressing up. He likes cars and the cartoons Bendy and the Ink Machine and Five Nighys at Freddie. He likes scary movies and loves playing games board games. He enjoys spending time with his brother and sister and his cat Panther.
My son was diagnosed on April 26th 2018 with Medulloblastoma. He has under gone 6 weeks of radiation and is currently going through chemo. He has been so strong!
Zak had been having headaches for a couple weeks when I took him to the ER. After three times and finally a someone listened to me. Zak would wake up in the middle of the night screaming in pain and I knew it wasn’t normal. The tumor they found was so big it was blocking his spinal fluid from flowing which cause fluid on the brain.
We currently live about 3 hours from Seattle Children’s Hospital and having to go four times a month while also taking the time off work, really hits home in every way possible. We are emotionally wrecked, financially strapped, and always scared when the kids say they don’t feel well. Zak isn’t the same since everything has happened. He doesn’t run and jump around and scream and play. He has a very hard time around other people that are not family. My oldest 2 kiddos have learned a lot. They have fought with us supporting their brother but it has emotionally wrecked them and set them back academically.
Carson is very funny and has the best sense of humor. Being silly and funny makes him laugh. He’s also very very sweet and thoughtful. His interests change all of the time but Pokémon, Dragon ball z, ghostbusters are a few.
In the spring of last year, Carson was having headaches, his eyes looked different and balance gating issues. He was diagnosed on August 8, 2017 with Medulloblastoma. It took 8 doctor appointments to get him diagnosed.
Before diagnosis he played football, basketball a very normal child and now he has so many limitations. He’s in a wheelchair due to Posteria Fossa Syndrome. He has nystagmus with his eyes since surgery. He lost some hearing from chemo but doesn’t like to wear his hearing aids. He’s a amazing child and I hope and pray he regains more of his baseline.
Adelyn is 6 years old. She is very outgoing and happy for the most part. She loves Jojo Siwa and unicorns.
On May 10th of 2018, Adelyn was diagnosed with Medulloblastoma. Before her diagnosis she was experiencing nausea (only in the mornings) and her eyes were moving inward.
Adelyn has endured 30 rounds of radiation and five cycles of chemo so far with four more cycles to go. She had to have a Mickey tube put in due to weight loss and had a shunt placed just a couple of days after her tumor resection. Due to everything Adelyn has been through she also struggles with anxiety.
Adelyn’s cancer diagnosis has definitely changed our family life but we do our best to be as normal as possible, just as it was before diagnosis
