Life was so easy that first summer that Tad and I were married. During the evenings, we would take off with the dog for a walk on our country road because we could not get enough of the luxurious summer nights.
“It hurts,” my nine-year-old son Spenser said. He pointed to his thorax region. His pale face, shrouded by darkness, expressed no intense pain. Neither did his voice. Instead, his countenance was the same as always, one of bemused contentment.
“What hurts? Your side?”
“It hurts,” he said. He trotted along, without stopping or bending over, with no apparent agony on his serene face.
As a steep hill lessened the gravity underneath our feet, our walking broke into a jog. “It’s probably just a stitch in your side. Bend over, stretch,” I told him. “That would happen to me when I rode horses.”
On other summer nights, with the locusts screeching, Spenser might say softly, but only occasionally, “It hurts.” He again would point to his chest, with a slight smile. It never hurt when we were in the house. It never hurt when we were eating dinner. It never hurt when he got up in the morning. Only sometimes at night, in the thick, sweet scent of Russian olive trees did it hurt.
According to the autopsy report, Spenser died from T-cell lymphoblastic lymphoma, stage IV, arising from the mediastinum. The report states that “the significant gross findings included a large white, fungating mediastinal tumor (1,350gm) which encased the heart, aorta and great vessels, and extended posterior and inferior to involve periaortic, and mesenteric lymph nodes as well as both kidneys and adrenals.” The resident pathologist concluded the summary by stating, “It is likely with a tumor of this size the patient would have been symptomatic.”
In other words, we should have known, but I swear, other than his terrible appearance right before he died when his chest bulged out from the tumor, we had no warning, other than this soft, simple statement of “it hurts” that he randomly said, only sometimes, during walks on summer nights.
“Why didn’t we take him to the doctor when he first told us it hurts?” I now will ask Tad as we hike on the dirt road. During a full moon the countryside is so bright that we don’t need flashlights.
“I remember thinking at the time that maybe we should have,” Tom answers. The dog trots in front of us, dragging her leash.
“But we did, we did take him to the doctor, the Tuesday before he died because he had been tired. They diagnosed a sinus infection,” I say. By the time we emerge from the tunnel of trees, the vista opens up into wide fields. So whether the branches are laced with dainty ice, or the rolling hills blaze with orange and yellow, we keep having this same conversation. Why didn’t we take him to the doctor?
“But we did, we did end up taking him to the doctor.”
“The Tuesday before he died, and the diagnosis was a sinus infection.” We keep circling back to this deserted, rusty place, where questions and intentions lie strewn around like abandoned junk cars, their chrome glinting in the sun.
A few months after Spenser’s death, I sat on the plaid couch in the basement, talking to Spenser’s pediatrician on the telephone.
“They all think we’re crazy,” I began, my elbow leaning on the arm rest. “I guess I should have known that he was sick. But really, he had no symptoms. He had been tired for a month, and that’s really all there was.”
I was not telling the whole truth. There were those times walking the dog, under the overarching woods at dusk, that Spenser smiled, pointed to his chest, and said, “It hurts. Here.”
Now I listened to the pediatrician’s calculated phrases. “There’s really no way that anybody could have known. The only way that the cancer would have been detected would have been a chest x-ray,” the doctor stated,” and it just isn’t practical to do a chest x-ray every time a mom comes in complaining that her kid has been tired.”
He’s right. I never blamed the doctors, who did all they could.
In the middle of another conversation, Tad and I strolled down the hill.
“Could we somehow have prevented this? What about the herbicides and pesticides in our food? Or the toxic fumes from cars?” I asked.
The road was dappled with moonlight, and all kinds of night creatures throttled in full force: rattling, droning, hissing and shrieking in an exuberant crescendo. Maybe they were all talking to us, trying to reassure us that we couldn’t have done anything differently. But they don’t have any answers, and neither do we.
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My heart breaks for you … Thank you for sharing your story …. no matter the reason we l wish we could or should of done more .. a parent should never bury their child . Thank you for sharing your story may help someone . Prayers to you and your family .
Thank you for sharing this about your Spencer. I had heard what he had died from at our meetings but never knew the whole story.
Nathan’s mom
Thank you for sharing the story of your devastating loss. Your story sounds eerily similar to the situation surrounding my 8 year old grandson’s sudden death. He had no symptoms; and appeared to be a healthy, active 8 year old boy; however, his mother noticed his irregular breathing while he was sleeping a few days before his death. She took him to his pediatrician who examined Cole and said he was fine. Two days later he died suddenly at home. The autopsy showed the he had a rare from of Lymphoma that attacks the pericardium. Both my daughter and her husband have struggled with all the what if’s and the feelings of guilt that they somehow should have known.
I am going to share your story with my daughter. She may want to reach out to you. Again thank you.
Thank you. Our heart is broken after taking our little girl to our local Australian rural emergency department nine times and a second regional hospital twice. We were turned away with virus and arthritis etc diagnosis each time. I would send my husband sometimes as I felt they thought I was attention seeking or just an overprotective mad mother. Within 30 seconds of being seen at a city hospital We were told they thought it was her spine and order scans of her brain and spine. Within hours she had gone from the green, to red, to resus zone. Then we were told the news that her hydrocephalus was so bad they needed to put in an emergency shunt and the scans revealed 8 lesions in her spine and 10 in her brain with hundreds of seedlings up her spine.
A few months later I returned home with our little girl dead on my lap. I feel I will never recover from the what ifs. Three years on and it feels as raw as yesterday. There is little support for us in a rural area, it’s all in the city. That’s why online TCF is so valuable to parents like me with nowhere else to feel normal.
Thank you for sharing your beautiful boy with us.
Dear Millie, I am so very sorry for the loss of your little girl. Thank you for your comments on how TCF online resources have helped you. We appreciate that you took the time to reach out to us despite your own grieving heart. In compassionate friendship, Cathy, Nina’s and Chris’ mom
I too lost my son. I too called Dr.s telling them he was crying all the time and was told he had gas, buy some Gripe water. I called again to say his jaundice was very prevalent and was told “he has that nice olive skin, it may take a while for the colour to disappear. My son Adam died at one month old. I woke up to find him dead in my arms at 7:15 a.m. An autopsy report showed he had a congenital heart condition called endocardial fibroelastosis. My son needed a heart transplant. I will forever live with the guilt that I didn’t fight harder for him. I too am a member of The Compassionate Friends in Canada. Thank you for sharing your precious Spencer with us and your immeasurable anguish.