Family mourns loss of 5-year-old cancer victim

MAT-SU — Courage, tenacity, humility and compassion are traits most people spend their whole lives striving to incorporate into there own character. Seth Bellamy, a five-year-old little boy, possessed all of these and more.

He was truly inspirational, touching the lives of many across the nation, and most prominently in his home state of Alaska. Seth was diagnosed with Acute Lymphoblastic Leukemia (ALL) in September 2012 just before his second birthday. He had traveled thousands of miles to be the ring bearer in his Aunt Amber’s wedding. The trip was meant to last a little over a week, but due to the diagnosis of ALL by the talented team at Boston Children’s Hospital, Seth and his mother Maggie had to stay behind for his first rounds of treatment. Seth’s father Jonah and the boy’s two sisters, Marlee and Jasmine, headed back to Alaska. The family could not have predicted how the next few years would play out, but one thing remains certain, every moment with Seth up to his last was a gift.

The following month, Maggie and Seth made their way back to Alaska, where they were met with extraordinary support from the community.

The next three years were filled with extensive chemotherapy treatments and several lengthy stays in Anchorage at Providence Hospital’s Pediatric Unit and Pediatric Oncology Unit. Seth’s team of nurses and doctors became an extended family. While his journey was daunting, his spirits were always bright. Seth and his family were seeing improvements at every session, he was fighting hard as he wanted to be home with his sisters, friends and favorite dog, Carl, and make his way to Disneyworld to meet his idol at the time, Buzz Lightyear. Thanks to the generosity of the Make A Wish Foundation, Seth met his superhero. To top it off, after 31 months of treatment, Seth was in remission.

With eight months to go, optimism was contagious, but with cancer, you just never know when the tides will turn. On April 7, 2015 after a routine follow up visit, Maggie and Seth returned home, as they normally did to greet Jonah and the girls. As Maggie walked in the door, the phone rang. It was Providence Hospital with gut-wrenching, heartbreaking news of the cancer’s return. The words voiced at the other end of the line are permanently recorded in Maggie’s memory: “Maggie I’m sorry to have to call you with this news…”

Maggie dropped to her knees in despair. ALL had come back with ferocity and Seth’s options were limited. The family decided to move forward with a bone marrow transplant, another taxing journey in this amazing boy’s young life. Seth started all over again with intense chemotherapy, multiple hospital stays, medications and testing.

Early this summer, reports came back of a 100 percent donor match. Preparations were made, and at the end of July, Seth and Maggie headed to Doernbecher OHSU Children’s Hospital in Portland, Oregon for the longest, most arduous, painful part of Seth’s battle.

Through it all Seth was a beacon of hope and his spirit as bright as rays of sunshine. On August 12, the transplant commenced. With any transplant or long-term hospital stay, risks of infection run high. Seth contracted a bacterial infection, forcing him into isolation for the duration of his post-transplant stay. Isolation affects the psyche in extreme ways, but Seth stayed happy, which allowed Maggie to stay positive and hopeful. By the first week of September Seth’s body was accepting the donor bone marrow.

The most severe side affect of a bone marrow transplant is Graft vs. Host Disease (GVHD). Not much is published and there are stages within two types, Chronic and Acute. It can strike in an instant and if not treated immediately, can progress to a critical stage, especially in a child. After grafting Maggie was told Seth might be able to be discharged and proceed with outpatient care, but she had to get his daily caloric intake up. Seth had little to no appetite. He was fighting nausea, abdominal pain and sever diarrhea. He was fighting an internal cellular battle and starting to show signs of what we now know as GVHD.

He was in so much pain, tired and losing his light. To those of you who knew Seth, he had the uncanny ability to brighten up the darkest of days. Over the weekend Seth developed a small rash. By Sunday most of his body was covered and by Monday he was admitted to the ICU. Seth spent his fifth birthday heavily sedated and wrapped from head to toe in ointment and gauze to treat the rash that was now a second-degree burn. He was still fighting, reaching out for his mom, trying to open his eyes when his sisters would come in for a visit. The ICU team spent countless hours trying to heal Seth. His respiratory rate was sporadic, his burns worsening by the hours. He remained in critical condition up until his death. Maggie and her new team of Doctors consulted Boston Children’s hospital and confirmed his diagnosis of Stage IV Acute Pediatric GVHD.

Maggie and her family held on to hope for some time until the afternoon of October 5, when doctors again came in and told her to call those family members she knew would want to say goodbye.

I will never forget that text, followed by a phone call, from my sister.

“Doctors are not sure if he will make it through the night,” Maggie told me. “When can you get here to say goodbye?”

Family members made their way to Portland from California, Alaska, and Idaho. Maggie stayed strong, allowing each person his or her time to say goodbye. Tuesday morning, Seth had suffered a stroke and irreparable brain damage. Machines were keeping him alive. We had lost the battle, but not the pure innocent soul of Seth Bellamy. Out in a secluded courtyard, under sunny skies and a canopy of trees, Maggie and Jonah were able to hold their son one last time.

Seth was and will forever be a superhero. The memories of him dancing around in suits, singing along to his favorite songs, acting out Teenage Mutant Ninja Turtle fight scenes and dreaming of having his own Power Ranger super powers will stay with the lives he touched.

The family would like to express their sincere gratitude to the entire Pediatric Oncology Unit and Pediatric Unit at Providence Hospital. To the community of Wasilla and Palmer, the family thanks you from the bottom of their hearts for all of the love and support you have shown to them and Seth over the past three years. Your prayers, kind words, and positive inspirations helped Seth keep his fire and fight. They also want to say thank you to Ted Anderson, everyone involved and everyone who donated to the Big M Benefit and to the Millar Family Annual Jammer. The family is humbled by your efforts. To all of those who donated to the Go Fund Me Fundraising Campaign, thank you as well. Jonah and the girls would never have been able to stay together until the end without all of your generous donations. And to the Doernbecher Pediatric ICU team, thank you for your efforts, your compassion, and your willingness to let the family say their goodbyes in the courtyard.

Maggie, Jonah and the girls invite you join in a Celebration of Seth’s Life on Saturday, Nov. 7 from 2 to 4:30 p.m. at the Eagle Hotel in Palmer. It will be a potluck event so please bring a dish.

Amber Costos is a freelance writer and Seth Bellamy’s aunt.