Siblings Have a Different Type of Grief

In August 2022, my middle son, Xavier, started his junior year of high school. His little brother Leo was a freshman. They looked forward to being at the same school again. 

Then Xavier started losing weight. He had severe back pain and nausea. 

On September 26, our world flipped upside down. A computed tomography (CT) scan showed Xavier had cancer. We went directly to the local children’s hospital. 

Within a couple of days, we went to St. Jude Children’s Research Hospital, about an 8-hour drive from our home in East Tennessee. My husband, Chris, and I thought we were doing Leo a favor by having him stay home with my husband. This way, life could be as “normal” as possible for Leo. Xavier would do chemo and surgery, and then he would be OK, right? 

Separated for the first time

Leo had never known life without his brother. He and X had always shared a room or had rooms next to each other. Just shy of 3 years apart, they were best friends. Sure, they would fight like cats and dogs, too. At times, we had to separate them, but before long, they were back together again.

We did not share many updates about X with Leo. We said he was getting surgery and chemo, and then he would come home. 

Leo did not see his big brother for over a month. The brother who left was not the same brother who returned. X had lost more weight. His thick hair was almost gone. Xavier’s immune system was weak, so we had to do things differently at home to protect him. 

We were home for Thanksgiving. Leo came down with a bug. I will never forget him sobbing, “If I get X sick, he is going to die.” We spent that Thanksgiving isolated. It was OK. Next year will be better, right?

December came, and we had a wonderful Christmas. The day after, we left for St. Jude so X could have surgery. It got 87% of the tumors. We hoped radiation would take care of the rest. 

Life changes after cancer spreads

In January, X got more scans to plan his radiation treatment. That is when we learned the cancer had spread. We were still hopeful. We would start chemo again, shrink the tumors, and then hit them with radiation.

We did not share details with Leo. We filled him with the positives. 

We returned home for a few weeks in February. Xavier slept 16–18 hours a day. We told Leo that X was resting because his body had been through a lot. He was getting ready for his next battle. 

Before we left for St. Jude for 12 weeks of radiation, we said our goodbyes. Leo and X said, “Bye, Broski! See you in 6 weeks.” We had planned for Leo and my husband to visit Memphis. Leo could see X, and then Chris and I would swap places. He would stay in Memphis, and I would go home with Leo. 

By the end of February, scans showed the cancer had spread through Xavier’s chest and abdominal cavity. We brought him home to have chemo at the St. Jude Johnson City Affiliate Clinic. 

We came home with X on hospice. But it was not end-of-life care. It was so we would not have so many doctor appointments. We were still in this fight. That is how we explained it to Leo. 

Xavier’s Make-A-Wish trip to Disney World was fast-tracked. After that week, we spent another week at a beach house that someone had gifted to us. Our oldest son, Joel, came from California, where he was stationed with the U.S. Navy. 

I tried to talk with Leo. I realized that maybe a cure was not in store for X. Leo asked that we come back to Disney after X was healed. I told him we would do that, but sometimes people do not get healed, and that might happen with X. 

Leo sternly said, “Don’t you ever say that to me again. My brother is going to be OK.” 

Saying goodbye to Xavier

We arrived at the beach house on Sunday. By Tuesday, X had gotten much worse. By Wednesday, we knew he was dying. 

X hated hospitals. At 17, he did not have control of much, but we allowed him to control how he would leave this world. When he said no hospital, we honored that. We told Leo and Joel that it was time to say what they wanted to say to their brother. They did just that. Then on Thursday, March 23, 2023, Xavier took his last breath. His 2 brothers were stunned. 

Looking back on our journey, I don’t know that I would change anything. Some might call it an "ignorance is bliss" attitude, but it was how we survived. We simply could not carry the weight of the truth and function at the same time.

I look back and see how we left our 2 boys in the dark. With Joel, I only gave happy updates because I did not want him stressed and worried while serving in the Navy across the country. Leo was so young. I wanted to protect his innocence.

Remember the siblings

The heartbreaking truth is that siblings are often forgotten. During the illness, everyone focuses on the patient, the parents, and the caretakers. In the aftermath of grief, the siblings are expected to return to school, keep their grades up, and go on as if nothing happened.

They often do not feel comfortable sharing the depth of their grief. They see our shattered hearts. They do not want to cause any more sadness.

But their grief is different. We lost a child. They lost a roommate, a secret-keeper, and a lifelong companion. We cannot fully relate to their type of emptiness.

When a sibling dies, a piece of the past and future goes with them. To anyone walking this path, remember the ones standing in the shadows. They are grieving just as deeply. They need us to hold them close.