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Declan - Childhood Cancer

Declan - Childhood Cancer

Declan Fish is a sweet, active 4-year-old boy with an infectious smile who loves trains, tractors, boats, his stuffed monkey and his imaginary pig. Erin is his devoted mother and caregiver. Please read their story.

Tell us about Declan's journey and what you tell your friends about proton therapy.

In May 2017, we started noticing a significant change in Declan's gross motor skills. He had been walking and had begun to run, and suddenly, he could barely walk across our living room. We weren't sure what was going on. We saw the pediatrician, Declan got a clean bill of health and a recommendation to see an ENT. We chalked it up to being overly-concerned parents. That same night, good friends and neighbors came over; one of those friends is a neurologist and brain tumor survivor. When he saw the change in Declan's walking gait, he strongly recommended that we go to the ER immediately for a neurological evaluation. We moved quickly but still thought that we were overdoing it.

That was not the case. Doctors discovered a softball-sized tumor in his brain. It was a Grade III Choroid Plexus Carcinoma, which was removed on May 30. Because of complications due to the initial surgery, Declan had more surgeries and spent more than two months living at Seattle Children's Hospital. Once he was healthy enough, he started a six-month chemotherapy regime that was challenging for all of us. It is something that no child or parent should have to endure.

After our arduous battle, we were thrilled to have a year and a half cancer-free. Declan was healing, had re-learned how to walk and talk and eat, and was starting preschool. Though he had many developmental delays and challenges, we thought we were on the road to health.

Then, on February 27, 2019, our lives shattered again when we learned that Declan had relapsed. Three more brain surgeries followed, leaving him with more damage to the left side of his body, eyesight loss, and sensory loss. We didn't think that we'd see many more years with Declan. Doctors at Seattle Children's said that the only option left was radiation. I was terrified. How could I do this to my three-year-old's brain? Finding the SCCA Proton Therapy Center was an incredible blessing.

Everyone at the Center contributed to a great experience. They knew how scared I was and helped me with expectations. They took care of both Declan and me. Radiation was a breeze compared to chemo. The building is so calm and beautiful that Declan loved coming, he even asked to go on the weekends!

The treatment made him tired, but otherwise, he did well. His favorite part of the day was seeing his nurse, Steve (featured in this newsletter), and all the staff. They gave him toys and pretended that the gantry was his "rocket ship." They turned one of the worst months of our lives into something bearable. And now, Declan has had three clean scans and remains cancer-free.

How's life been treating you and Declan and the rest of the family since his treatment?

Life is so good now. Declan is four years old and attends preschool five days a week. He is one of the happiest kids you'll ever meet. He has a joy for life that humbles me every day. We live each day to its fullest and relish in the simple pleasures of watching Declan do new things each day. We are just so happy to be doing "normal" things like going back to work and sending Declan on the bus to preschool. It's pretty spectacular.

Is there a quote, a person, a song, or anything else that inspired you during Declan's cancer journey? Was there anything inspirational for Declan?

What helped us the most was meeting and talking to other brain tumor families. It is such a scary journey, and talking to others who had experienced it was invaluable. Knowing other children who had gone through this treatment and were now thriving was the thing that kept me going. As for Declan, his imaginary pig and throwing any ball that he could find inspired him.

What will you remember most from his treatments at SCCA Proton Therapy Center?

I will always remember the people. We came every morning at 7 am and were the first people there, and the nurses often played with Declan, tossing balls to him in the hallways. At the end of treatment, they gave him a toy pig, which he named Steve (after his nurse). I don't think I will ever forget that.

Is there any advice you'd like to give other families going through this?

It is terrifying and hard, but you can do this. The Center is the best place to be in the world, and the staff is there for you to lean on. Also, find other families going through the same experience. Sometimes it is hard to reach out, but the support from other families is invaluable. We can answer questions that no one else can. Declan can tell other kids about his "rocket ship," and I'd love to pass along encouragement that others gave to me.