the family of Kane Kinsey

Kane was diagnosed with a rhabdoid tumor (sarcoma) on March 17, 2021. The medical team wanted to try chemotherapy first. Rhabdoids tend to not be responsive to chemo, but they have seen some response to a chemotherapy treatment called ICE. It is the big baddie of chemo and after his three-day inpatient treatment, a fever would follow 5 days after and he would have to go into the hospital. They would run tons of blood work and make sure there wasn’t an infection. Thankfully there never was, it was just how his body responded to the chemo. We were supposed to do that every three weeks for a year. After the second treatment, Kane’s tumor wasn’t responding. We did one more round just to be sure and the tumor appeared to be getting bigger and causing Kane a lot of discomfort. Kane had a rhabdoid tumor on his tailbone. Kane’s cancer is “rare and hard to treat”. These are words we have heard a lot. Most often, it is soft tissue cancer, and Kane’s wasn’t in any soft tissue or organs. So that made it even more of an enigma. His remained isolated, helping him further. Also, this is usually hereditary. Kane’s again is not. He was just born with it. There are 20 or fewer cases a year in the United States. Research is few and far between, not to mention incredibly outdated. Right now there is a big push in the medical field to get more treatment for childhood cancer as it is the leading cause of childhood mortality.

We got rid of it through a successful and intense surgery. Following surgery, Kane received 30 rounds of radiation. To make this happen, Kane and I stayed in Cincinnati at the Ronald McDonald. We would get up at 5 or 6 a.m. and head to the north side of Cincinnati. Kane would be sedated and receive very intense proton radiation to the site where the tumor was located. Proton radiation is a pinpointed treatment that allows only the area that needs it to receive treatment to help minimize the side effects. We were trying to kill any leftover cancer.

In January 2023 we received a clean scan. No evidence of disease - but not cured. August it came back in the flora of his lungs and along his diaphragm. It came back in a “distant” location. This happens to 2/3 of rhabdoid patients. It's returning to a distant location is not good. This time we are dealing with vital organs. Soft tissue. Our “Hail Mary” was immunotherapy. November 20th we did not do immunotherapy because Kane was experiencing some joint pain and we attributed that to the possibility of his dose being too high. We also noticed a small lump on his left side, close to his armpit, but wanted to keep an eye on it with the hope that it was nothing and could hold off until January for scans. We scheduled an appointment for a week later. On Tuesday, November 28th we went to our appointment in Indy. Kane had his vitals and blood work performed per usual. The small lump had doubled in size. This made our Indy oncologist, Dr. Doug, concerned. After consulting with Cincinnati we did a CT scan. Through the scan, we discovered that there is a mass in his chest wall that is roughly the size of his heart along with other substantial growth. Kane is going to be placed on hospice in the coming weeks and anything we do will be to keep Kane comfortable and enjoy all the time we have left. If we had to put a time frame on it, at best, we are hoping for a year, but there isn’t any guarantee of that.

We request that you do NOT express that Kane is losing or has lost his battle with cancer. He is not losing, not at all. KANE IS A WARRIOR. KANE IS A WINNER. KANE IS A GIFT.

On December 5th Kane will have a proton radiation simulation followed by a PET scan. On December 6th he will have a CT scan. The hope is to do a few rounds of radiation to shrink tumors and help slow growth to give Kane some relief. We will have a clear idea of how to proceed after our scans.

We are raising funds to help Kane's family be able to afford to be with him, care for him, make memories with him, and still be able to run two households. Kane lives part-time with his mama and bonus dad and part-time with his daddy.