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Matthew (my then 15-year-old son) and I were at Outback Steakhouse on January 12, 2020. It was a special “mother and son” outing prior to his basketball game scheduled for later that evening. Matthew kept on getting up to go to the bathroom throughout the meal. I asked him if anything was wrong. He said that he was hurting. As he kept limping back and forth to the bathroom, I became more and more concerned. “Forget the basketball game”, I said. “Let’s go home and have Dad take a look at you.” We get home. My husband takes a look. “We need to go to Urgent Care right away”, he says.
We drive him to Urgent Care. At this point, Matthew can barely walk, and he is in severe pain. The doctor examines him and sends us to the ER via ambulance. The ambulance driver says to me, “It’s probably a torsion. My son had this…. If they catch it early enough, they can save the testicle.” We get to the ER. They run some tests. The urologist comes in. He needs emergency surgery, she says. The doctor says she does not know what this is, but the testicle is not functional. She will know more after she removes it, she says. Matthew begins to cry….
My husband and I wait anxiously in the waiting room. After 3 hours, the doctor emerges. “The surgery went well… I do not know what this is…. It could be cancer. I sent it off to pathology….” We are thinking, what are the odds of this being cancer, and if it is cancer, it is probably testicular cancer. There is a high survival rate for this type of cancer, I tell myself. Worst-case scenario, they got it all and he will be fine….
Two weeks pass. The first two screenings for testicular cancer come back negative. I begin to relax. Matthew has a follow-up appointment with his PCP. He says, “If I was a betting man, I would say this was a torsion…” I relax more. It’s Friday. I think to myself, I should call the doctor about that last test result. I wanted to tie up the loose ends, have a good weekend and move forward with the New Year. I leave a message, asking that she call me. I am at home on my computer, still working. My husband is home in the kitchen. We are talking dinner plans. We get the call from the doctor. “I’m sorry but it is cancer, Rhabdomyosarcoma….”
“What…. how do you spell that…? you got it all, right? …..” “Well, this cancer can spread to the lungs……we need a CT scan….” First thing Monday, we show up unannounced and ask for the CT scan. They put us on the schedule, and we get it done. A few hours later, we get the call from the urologist. “Come to my office….” “This is not the news we wanted”, she says as she pulls up the imaging……It is in his lungs, there is a spot in his neck…. you need to go to Hopkins….”
We tell my parents when we get home. My mother breaks down and cries. She never cries. Matthew is seen at Hopkins later that week. They run their own imaging. They confirm his diagnosis- Stage IV Embryonal Rhabdomyosarcoma. The PET scan lights up like a Christmas tree. The cancer is everywhere, in his lungs, pelvis, bones/axial skeleton….
I just sit and cry. I tell the Social Worker I do not want my child to suffer. We ask if the treatment will work. The doctor says it either will or won’t. My husband signs the paperwork to start treatment.
Just like that, our lives changed forever. Endless days and nights are spent at the hospital. Matthew endures multiple rounds of intensive chemotherapy, 70+ radiation treatments, multiple ER visits and hospitalizations, two relapses, a bone marrow transplant, palliative chemotherapy and radiation and 3 additional surgeries. All done with COVID in the backdrop.
There is a St. Jude’s television ad running now. The father in the ad says “You think that there is nothing worse than someone saying that you have cancer. There is, it is when they say your child has cancer.” There are no truer words.
Matthew passed away on December 9, 2021, after a nearly two-year battle with this horrific disease. The hardest thing I ever had to tell him was that there was nothing more the doctors could do to help him.
Our goal is that no parent will have to tell their child there is nothing more that can be done.
