Fight Like the Averys
By Duncan & Nohea Avery
Noah is our goofy, fun-loving, silly 5 year old boy who has a smile that will lighten the room. He’s such a unique, special, perfect little boy. Our 7 year old daughter is tougher than nails. She is an amazing big sister. She just takes her little brother in and will protect him.
June of 2018, our daughter started having some symptoms. Vomiting in the morning, then it progressed to having headaches, and she was really tired. In less than two weeks from her first symptom to the MRI, we were told in the ER, after the MRI, that they found a tumor in the back of her brain, a medulloblastoma. We had surgery a couple days later, and while she was recovering, our son started exhibiting some symptoms. Thirteen days after our daughter was diagnosed with a brain tumor, our son was diagnosed with the same tumor. They came out and said, “I’m sorry, but he’s got a large tumor in the same exact spot as his sister.” He was immediately admitted to the ICU to be monitored, and we had surgery a few days later.
Due to their ages, they had different protocols. The youngest they like to use radiation is six years old. Kalea ended her last round of chemo in late August. Our son, because he was so young and due to the side-effects of the radiation, they don’t like to use that treatment approach with a four year old. So he did something called the Head Start 4 program, where it was three rounds of high-dose chemo. Then after those initial three rounds, we were put into a trial of three more rounds, and you get a higher-dose chemotherapy with a stem cell transplant.
After the diagnosis, they both had posterior fossa syndrome, especially our daughter, and it affects their mood. They have labile moods, horrible mood swings. She also lost her speech. To be six, to not understand what’s going on, to know that you and your brother have the same sickness but he’s always in the hospital with mommy and you’re not, there was a lot of fear and emotions that a six-year-old probably had but couldn’t verbalize. All of a sudden, that routine and that constant in her life was gone.
The Cancer Support Community of Redondo Beach brought us a place of comfort. It provided us a safe place for our daughter, and it offers us that support that we needed when I thought that we were losing our daughter, and we thought that she, emotionally, was just going downhill. It helped us bring our family together and know that we had a place that was able to provide support, to be a constant in our lives.
Kalea, she’s been in remission for almost three months now (as of November 2019). She’s back at school and really thriving. We need these private groups and private events to help raise funds. The Tour de Pier does an unbelievable job with the Uncle Kory Foundation, of being able to donate to research and donate to helping out the cancer communities.
Childhood cancer is not the same as adult cancer, but we’ve been treating it as the same. So much more research needs to be done for better and safer treatments for these little bodies. That’s why foundations and other things like this, on the private side, are so important for brain tumors and pediatric cancers.
Part of treatment is every three months they have to do a follow-up MRI, and, unfortunately, on October 15, we got the result from our son’s scan. She said, you know, “We’re sorry, but we found a mass in the cerebellum.”
Our son’s second surgery was October 30 of 2019, and this brain tumor, they caught it so early, it was very tiny. As resilient as he was, they discharged him the next day, they were able to remove the entire tumor. He had brain surgery on the 30th and he was trick-or-treating on the 31st with us in the stroller, and he was back at school actually on Tuesday.
We don’t have a normal life, medically, but we want them to feel like a five and seven-year-old, and we just want them to be happy and well adjusted and get to do all the things that other kids get to do.
Update: This video was filmed on November 15, 2019. Both Noah & Kalea have undergone further treatment for brain cancer. Noah had radiation and 12 months of chemotherapy. He is at home doing great. Kalea had a relapse in May. She had two rounds of high-dose chemo to remove the new cancer in brain and spine. She then had a month-long round of high-dose chemo with autologous stem cell transplant. She is now home and recovering day by day.