When Onyx was just 5 months old, his mom, Morgan, noticed something wasn’t quite right--he was not keeping any breast milk down and seemingly staring off into space. Because it was during a peak time of COVID infections, February 2021, the Redmans were told it wasn’t worth the risk of bringing Onyx to the doctor and to continue to monitor him from home. But after reporting to them that his head seemed larger, the doctors finally agreed to see Onyx in person.

At the pediatrician's office, a measurement was taken of Onyx’s head and it was confirmed there was swelling. A CT scan showed hydrocephalus and a 6cm tumor on his brain stem. Kris, Onyx's dad, and Morgan rushed him to Boston Children’s (since waiting for the ambulance would have taken several more painstaking hours) and he was prepped for surgery to remove the tumor the next day. The diagnosis was dire--an Atypical Rhabdoid Tumor (AT/RT) is a rare, fast-growing brain and spinal cord cancer primarily found in young children.

His primary treatment plan consisted of 3 rounds of high dose chemotherapy with a stem cell transplant. The Redmans then started using a high dose cannabis protocol and Onyx was considered in remission for almost a year. During this time, the Redmans were able to participate in a family retreat with Rett's Roost at Rolling Ridge with 6 other families. Although it was a wonderful experience, there were concerning signs of Onyx feeling unsettled.

Soon after the retreat, in July of 2022, a new 2cm tumor was discovered and he underwent another tumor resection, with a plan to start radiation after he recovered. However, while waiting for the radiation machine to be available, Onyx’s tumor came back for a third time. That tumor was again removed and radiation treatment started 3 days later.

Onyx made it halfway through his radiation treatments but began to have right-side weakness. In September, he got to attend another smaller retreat in Ogunquit. During this one, he celebrated his 2nd birthday, and his entire Maine family showed up at the retreat. It was a beautiful day that included a foam party. But his parents knew that something wasn't right.

The next day, an MRI showed that the tumor had grown rapidly to 10cm, covering almost the entire left side of his brain. All treatments were stopped and the family got to take one last trip to Alice's house on Cape Cod to honor his life. Onyx was then brought home on hospice care where he lived three more weeks.

Moments before Onyx took his last breath they had him very comfortable in their bed trying to help him with his breathing. Onyx's big brother, Jade, all of a sudden bounded through the door and started jumping around the bed saying " Let's play! Let's play!" Kris and Morgan were both trying to rush Jade out to keep Onyx as calm as possible and when they went back to check on Onyx he wasn't breathing. After what seemed like a lifetime he took a great big gasp for air. That was Onyx's last breath. It was October 10th, 2022.

One thing that really helped Onyx through treatment is music. He loved being serenaded and his mom says they had music playing at their house 24/7. One of the music therapists made Onyx a CD with his favorite songs, which helped him stay relaxed during procedures.

Onyx’s parents, Kris and Morgan, and their four year old son Jade have struggled in now being just a family of three. “It’s just devastating, we were so happy to have two boys close enough in age that they would be best friends for life,” Kris said. While Kris and Morgan were trying so hard to save their dying son, their other son, who was in an important developmental stage in life, was suffering too. Trying to keep them in contact and still care for Jade's needs felt impossible at times. It was tough, in all aspects of life–emotionally, mentally, physically, and financially. However, their family unit has become stronger as they now know that they can overcome anything together. And they recently made a big move to Arizona to start fresh and get a little more sunshine.

Their advice to parents facing the end-of-life of their child is this, "We set up a meeting with all of Onyx's different care teams and put all the options out on the table so we could give Onyx the best care for his final days. A meal train was set up so we didn't have to think about meals and hospice care helped with pain management and comfort medications. We had Onyx's heart beat recorded by the EMT which we keep dearly for it is a memory of him still being here." They also told us that they've found some relief in their grief by looking for signs from Onyx, exploring beautiful natural places, and continuing to share memories with each other and their community.

Kris and Morgan also shared their gratitude with us, “Rett’s Roost has gone above and beyond to make us feel that we are not alone in this crazy world of cancer and child loss. There are times when I think back and some of the happiest memories I have of Onyx are at the retreats that we attended. We've met some of the greatest families, who like us, have been through one of the worst tragedies a family can go through in life. They [Rett’s Roost] take the burden of losing a loved one, or someone who is still fighting, and make things a little easier.”