Ring the Bell

Posted On August 13, 2019

A year ago and before The Daily Dwayne existed, Tate had to undergo radiation treatments at the Mayo Clinic, and that is what today’s story is about.

When Tate was first diagnosed with Leukemia, he had “blasts” (bad cells) in his spinal fluid. For most pediatric patients, one dose of chemotherapy into the spine eliminates the cancerous cells. If more cancerous cells are detected after the initial intrathecal dose, they give the patient another dose and check again. And again and again until the blasts are gone.

I don’t remember how many doses of intrathecal chemotherapy Tate endured before his spinal fluid was clear of blasts. What I will never forget is how hopeful we were every time he went under anesthesia for the test or how desperate we felt every time the results were positive.

Greg and I were devastated when the doctors told us Tate needed radiation treatments; it was something we hoped he would be able to avoid, and it meant his cancer was really bad. The doctors explained that with the number of treatments it took to get rid of the blasts in his spine, it was probable there were more bad cells hiding on the bumpy surface of his brain. There is no safe way to test brain fluid for cancer cells in living patients; after years of research doctors know they are usually there if they can’t clear the spinal fluid quickly. The brain is a “safe haven” for Leukemia cells because the blood-brain barrier, which is essentially the body’s filter that protects the brain from foreign substances in the bloodstream, lets the Leukemia cells through but not the chemotherapy. (It recognizes the blasts as being made by the body whereas chemotherapy is foreign.) The only way to treat the cells beyond the blood-brain barrier is with radiation. We learned that if they treated the rest of the body and skipped the radiation, Tate’s Leukemia could come back. Those hiding cells would be enough to take over his whole body repeatedly.

Mayo Clinic is extraordinary; it is a beautiful space, and everyone we encountered was extremely helpful. One time we were nowhere near the the place we were supposed to be, and a lady left her desk to escort us across the building to the specific elevator that would get us to the right place. There are people to help you into and out of your car, there was help loading and unloading Tate’s wheelchair. Everyone there made it better.

Something Mayo had that I found unusual and also brilliant was a grand piano in the lobby. Often when we arrived, a Mayo employee was seated at the piano playing something beautiful.

The radiation treatments take place in the basement level of Mayo. There is a specific elevator just past the piano that only goes down from the lobby level, and that’s the one we needed. After checking in, we had to follow the path of ginkgo leaves in the carpet to the waiting area specifically for radiation patients. We could hear the peaceful sounds from the piano spilling into the basement through its high windows.

This is Tate’s radiation mask. If there is one thing throughout this experience that shows the horror of cancer treatment, this is it. The black pieces around the edge are what they use to fasten the mask to the table so the patient can’t move.

This is Tate’s first radiation appointment, before they put the mask over his face and secured him to the table. They let us come into the room with him to see what everything looked like. They were such kind kind people. They saw how terrible Tate felt and how scared we were, and they made it as comfortable as possible for all of us.

The door to the treatment room was about a foot thick, and the warning labels on it were enough to break our hearts.

One day, while Tate had been taken away for treatment, Greg and I sat in the waiting area too devastated to talk or work on the puzzle spread out on the table between us. A tall, thin, old man walked up to us with tears in his eyes and said, “I can see what you’re going through, and I’d like you to have this.” He pulled a laminated prayer card from his pocket and handed it to me. It is likely he was there for treatment himself and that he had a heart that could see past his own fear and pain to help us with ours is something I will never forget. I keep the prayer card in my bag and think of him every time I see it.

The radiation treatments were quick and terrible. Tate said they didn’t hurt, but that they made him feel bad in a way he couldn’t explain. He said you would have to go through it to understand.

There is a bell in the radiation waiting room for the patients to ring when they have completed their treatment. Patients are encouraged to ring the bell three times – LOUD! – to celebrate being done and to encourage other patients still undergoing treatment. I was surprised how many many Mayo employees pop into that room when they know a patient is going to ring the bell; they make a big, happy event of it. Tate could only ring the bell twice before the sound was too much for him to bear, but we all felt his joy hearing that bell ring out.

Tate’s radiation mask now hangs in his room to the side of his bed. He put his high school graduation cap on it, he lights it up with a laser pointer, and he decorated it for Christmas with a Santa hat. It’s not a scary thing for him anymore so much as a remnant of a brief, terrible ordeal he survived.

Here’s a recent picture of Tate looking happy and stronger at the physical and occupational therapy clinic he goes to now. His outfit had all the employees laughing with him. Some of the patients couldn’t tear their eyes away. When we were driving to the appointment I asked Tate if he was ready for the stares. He said, “Stairs? There are only 2 stairs to get into the clinic. I can do that now.” The moment he walked through the door he realized I meant “stares,” and he got a lot of them!

Tate has been through so much the past year I can hardly believe one person can withstand so much. But we have watched him do it, and we are so grateful for his fight. No matter how hard it gets, he always sees a future where he is well and living a good life.