This blog is about finding humor and meaning in the ups and downs of blood cancer treatment. Jenny Lovejoy Bennett's Acute Myeloid Leukemia(AML) story and diagnosed with bone marrow transplant. Jenny’s seven-year-old daughter was diagnosed with an advanced stage B-cell lymphoma. Jenny has maintained this blog to share her experiences, bringing insight, laughter, and tears to a subject .
Everywhere I go I am reminded of how lucky we are.
Summer and Faith
Under the golden fall light boisterous third graders swarm in and out of the dusty bug barn, shrieking at the sight of cockroaches. It is fall and we are on a county fair field trip with my nine-year-old daughter’s class. I am maneuvering Cali in her wheelchair through the bubbling crowd because she still fatigues easily. Her classmates don’t gawk or even ask questions. They know Cali, they know our story. Tarantulas and maggots are much more exciting.
Over the heads of the buzzing children, I see two familiar adult faces, smiling, laughing. I rack my brain. How do I know them? (Floundering recall syndrome is a common phenomenon for me these days.) It’s their matching T-shirts with kid-drawn hearts and the words “Bengie Love” that finally trigger the flood of memories. The “Kids with Cancer” summer camp, a beach-family like us, three children, one with terminal brain cancer. And then my heart drops a hundred feet because I suddenly realize why I didn’t initially recognize them. Where is the wheelchair? Where is Bengie?
Cali, Faith and Summer check out the county fair collections.
Bengie’s mom spots us. In moments, Bengie’s parents are rushing through the crowd, hugging me and swooning over Cali. “How are you, Cali?” they gush, all but embracing her. Cali, always uncomfortable with focused attention, abruptly muscles her way out of the chair and limp-rushes after her classmates with a sudden new interest in insects.
“Cali is doing really well,” I say, because mostly she is. After two-and-half years of treatment for non-hodgkins lymphoma, she is almost done with chemotherapy, like really almost done. Our finish line, her last possible day of having to ingest, infuse, or inject poison, is less than two months away. Most days, Cali goes to school. Most days, she can walk to the bathroom on her own. Most days, she is excited to play with a friend, go to the beach, eat ice cream. Over the summer, Cali had a part in The Little Mermaid with lines. We went camping. She walked to school every day for the first three weeks of the year. Things were getting pretty good! I almost forgot we were both cancer patients.
But somehow in these last final weeks we are having an unsolicited grand finale, where Cali is revisiting side effects we thought we put to rest months, even years ago. After avoiding inpatient status for more than a year, we spent a week at the hospital. In the past month, she has had crippling headaches so severe she couldn’t sit up without extreme nausea and bruises the size of golf-balls caused from low platelet counts. She needed a blood transfusion, developed fevers, and tested positive for Mononucleosis and a host of other viruses. She was listless and fatigued for weeks, spending whole days literally staring at the wall or sleeping. Even talking seemed to be too much work. We quit her afterschool theater class. She attended her regular school only four days in September.
Now let me interrupt to assure you there is absolutely no cause for alarm. Although her body is clearly stressed, her doctors claim her compromised condition is easily explained by the perfect nexus of cumulative drug overload and the back-to-school virus season. I guess the reason the cancer treatment protocols end when they do is a person’s body can only handle so much abuse. Apparently, doctors aim to bring patients to the brink of collapse, without complete obliteration of body and soul. I would say the two-and-a-half year mark has just about nailed it for Cali (and her family, too).
So on the eve our celebratory end point, we are strangely revisiting the skills we have developed over the years. We are remembering to how order hospital meals an hour in advance of our hunger. We are navigating bathroom trips with IV poles and pump cords. We are relearning how to transfer from a wheelchair to a bathtub without putting any weight on one’s legs. We are checking out the new hospital movies. We are collecting lots of beads of courage.
The doctors have assured us that, no matter what, this is all over December sixth. They have assured us the cancer is one hundred percent gone. And that is really great; at least that is what I keep telling myself, because right now it doesn’t feel that great. It feels like we are climbing up a loose and crumbly clay cliff, scratching for the top. We are only about six inches away, but we can’t seem to pull above the ridge as handholds of mudstone break off and fall precipitously to the ground. December sixth stretches farther away and time slows to a crawl. Cali, who is usually so curious and anxious to have a plan, spends hours staring into space, doing absolutely nothing, saying absolutely nothing. The days are endless.
But how can I possibly complain to these two parents who stand before me, bravely chaperoning their remaining children at the county fair. Before I censor myself, it slips out. “How is Bengie?” I ask, almost pleading.
Big Sur Fall
“Bengie is in heaven,” she says through a tearful smile without skipping a beat. Although the news can’t be more than a handful of weeks old, she is already practiced at its delivery. I embrace her. “How are you?” I venture
“Everything is hard. Everywhere we see Bengie. We came on this field trip when he was in third grade.” She stops to wave energetically to her present third grader who is calling to her from the miniature alligator exhibit. Life goes on, even after death. “They are amazing,” she continues, gesturing to her younger children in the distance. “They totally except that Bengie is happy in heaven. They call him on their imaginary cell phones. Bengie talks to them every evening.”
“He probably does,” I say with a smile. Soon Cali has plunked down in her chair and is urging me to push her to the pigs, and Bengie’s mom is being pulled in the opposite direction. We hug again. There is not much more to say. On the car ride home, I can’t shake the heaviness on my chest or the burning lump in my throat. Why did we win? Why did they lose? Can you even call it that? It could have been us.
After weeks of shouting for help every time she needed to move, Cali woke up one morning and promptly walked to the breakfast table. “How are your feet?” I asked in amazement.
“Oh they are a lot better,” she replied casually. “Can I ride my bike to school?” Kids. I roll my eyes. She had me worried.
Once again, we are lucky. I am thankful that she is feeling better. I am thankful our parallel cancer trajectories have always been forward and up and out (at least on average). I am thankful both of our cancers are gone for good (knock on wood). And I am profoundly thankful that we call each other from real cell phones, even when we have to call from the hospital. Happy Thanksgiving. Give thanks for the little things.