Tom Datema

By proton-admin | May 20, 2021

“While working to overturn the state’s denial, I was also denied the treatment by my insurance carrier — not once, not twice, but three times. During this battle, I wrote my state and federal representatives but only received answers on who else to contact that might be able to help. My employer’s insurance broker attempted to go to bat for me and also failed.”


I have worked for the Grandville, Michigan fire department for 31 years as a firefighter/EMT. In my line of work, I must be prepared for any situation. So, I tried to be patient when I first started feeling pain in my left eye and noticed some drooping in 2016. The optometrist told me it was dry eye and not to worry. But the pain and eye droop continued. Over the next two years, I saw two different optometrists and who said the same thing.

I thought it might be a sleeping issue because I’ve always felt tired in my facial area. I visited a sleep study doctor who quickly noticed that my eyes were not anatomically correct. “Finally,” I thought! I found someone who agrees that something is not right with my left eye. The sleep doctor referred me to the same optometrist I had seen in 2016. This time I insisted they do more tests. The optometrist finally realized that there was a lot of pressure on my left eye, noting the eye’s curvature was not correct.

I then received a CT scan which found a tumor, but doctors were hopeful it was benign. The optometrist personally called to apologize for not seeing this problem years earlier.

In November of 2019, I was sent to a well-known and highly regarded plastic surgeon specializing in issues around the eyes. They performed surgery to remove a 3cm mass. Afterward, he explained to my wife that he got it all, but she had a feeling that something was still wrong.

A few days after surgery, we met for a follow-up with the surgeon. He told me that the mass he had removed was an Adenoid Cystic Carcinoma (ACC). I would need to have my left eye and optical nerve removed immediately because of the aggressive nature of the tumor. This was about the first of December 2019. The doctor told me I had 24 hours to agree to the procedure.

Knowing that this surgery could be career-ending, I used that time to reach out to friends and Facebook groups to learn more about ACC cancer. I received tons of feedback, and someone mentioned that I should look into proton therapy. That treatment option had not yet come up in any of my other appointments.

I paused on the surgery and made appointments with an oncologist and radiologist in Grand Rapids, Michigan, to learn more about proton therapy. When I asked about the benefits of proton therapy, they were dismissive and recommended chemotherapy and immunotherapy along with traditional radiation.  Having PHOTON radiation would risk me losing all vision in the left eye and could have extreme side effects on my brain. That would have ended my career and altered my life dramatically.

Leaving the hospital, I felt my life was in a continued spiral towards the inevitable. Not knowing where else to turn, I continued lifting up major prayers to my Lord Jesus Christ, begging for answers that would help heal me and maintain my life that I was currently living. I continued to search the internet, Facebook groups, and hear from friends and suddenly started receiving suggestions that MD Anderson had doctors who understood my particular cancer and that they had a PROTON therapy center.

In January of 2020, I set up appointments in Houston and the first thing that Dr. Esmaili and Dr. Frank from MD Anderson told me was that I would not lose my eye. They had strategic plan that used PROTON therapy to target the nerves in my eye but avoid the eye itself and the brain. I was ecstatic and knew I had to have my treatment done in Houston, Texas.

You can already imagine the next part of the story; the insurance battle.

I initially attempted to make a claim with the state of Michigan who carries a special fund for on-the-job cancers for firefighters. I was told my cancer was not on the coverage list of cancer caused on the job and was immediately denied. While working to overturn the state’s denial, I was also denied the treatment by my insurance carrier — not once, not twice, but three times. During this battle, I wrote my state and federal representatives but only received answers on who else to contact that might be able to help. My employer’s insurance broker attempted to go to bat for me and also failed.

Advocates at MD Anderson told me about the Alliance for Proton Therapy, but it wasn’t until after the third denial that I reached out to them in the hope of getting my story into the media. While working with the great people at the Alliance on a possible media release to tell my story, I filed a complaint with the State of Michigan’s insurance regulations commission and won an option for a non-biased review of my insurance claim. In less than 24 hours after the fourth denial, I received a decision that my health insurance carrier was going to honor my claim for PROTON radiation therapy.

In late January, I headed back to MD Anderson to begin treatment.

I am beyond thrilled and thankful to God that I did not have to lose my eye. I am also grateful for the excellent care I received in Houston from Dr. Frank and many others. I am indeed a huge advocate for the benefits of proton therapy. I hope that we can continue to work hard and reduce the barriers to access and make proton radiation therapy easier to get; the proton therapy radiation option made such a difference in my life. Proton therapy allowed me to continue my career as a firefighter/EMT serving the citizens and guests of my COMMUNITY.