The Lifelong Fight of Childhood Cancer

By Lora Jackle

Childhood Cancer Awareness Month…every year, I make it a personal mission to spend the month of September raising awareness by sharing snippits of our life, snippits of our story, along with a conglomeration of childhood cancer facts put out by reputable organizations in the Childhood Cancer Community. Every year, I hope that with these pieces of our story and these startling facts, I am able to capture the attention of just one person. The reality is, just like with most life-altering/life-threatening/life-limiting conditions, no one becomes a warrior for childhood cancer until childhood cancer comes for someone they know. For me, it was my daughter, 17 years ago, before she was even my daughter.

Marz was born at 37 weeks gestation, the girl twin in a dyad. Per all reports, except for some initial breathing difficulties, and a short NICU stay for coordination of suck/swallow/breathe, she was healthy. Upon review of reports from the pediatrician, it is evident, though, that she was the “weaker” twin from the start. She was sleepier, delayed in gross motor milestones like holding her head and rolling. It’s likely that her little body was filling with mutated cancer cells the entire time. When she was just four months old, her body was so filled with leukemia, and her liver and spleen had become so large, that they actually caused intussusception, a condition where the intestines fold back on themselves, which is a medical emergency requiring immediate intervention. She was covered in bruising as well, and there was an initial suspicion for abuse due to the sudden appearance of the bruises (this was unfounded, but commonly mistakenly assumed in infant presentations of leukemia). Initial bloodwork revealed severely high white blood cells, severely low platelets, and she needed a breathing tube to protect her airways, as her body was shutting down. She was not expected to make it through the first few days of treatment, and if she did, the odds were still abysmal, because she carries several genetic mutations that make surviving cancer less likely, and relapse incredibly common. Survive, she did, though…and though she has significant “late effects” of chemotherapy that she struggles against every day, she is living a full and beautiful life.

The details of how and why I became her mom is a story for another time. I was a medical professional involved in her life, and when it became clear she needed a foster home, and eventually a permanent home, I knew that this was my true life’s purpose. But that story, though a beautiful one, is not the purpose of today’s post. Instead, in the spirit of raising awareness, some things I have learned along the way, being a “Cancer Mom.”

Childhood Cancer is Not Rare: Every day in the United States, approximately 47 children are diagnosed with cancer. One in 285 US children will be diagnosed with cancer by the time they are 20 years old. This number is significantly higher in certain genetic conditions, like Phelan McDermid Syndrome, or Down Syndrome (https://www.alexslemonade.org/). 1 in 4 elementary schools has a child fighting cancer.

Childhood Cancer is more than just the cute bald kids you see on the Leukemia Lymphoma Society commercials: There are 12 types of childhood cancer, and more than 100 subtypes. Everyone’s journey is completely different, even if they have the same type/subtype of cancer. Leukemia, lymphoma, and brain tumors are the most common types.

Childhood Cancer is a lifelong fight, even if children achieve remission: Because of the treatment they had as children, by the time they are in their 30’s and 40’s, 95% of childhood cancer survivors will have a chronic health problem, and 80% will have severe or life-threatening conditions (https://katescause.com/) My daughter falls into this second category.

Even if your own child survives, you will be surrounded by and forever changed by an obscene amount of loss. Your child will too: Once you’ve seen, heard, and experienced this, you can never go back and un-know what a parent looks and sounds like in the moment that they lose their child. Your child may lose friends, and playmates, to this disease. You, too, will likely lose friends along the journey.

There is no “good cancer”: Yes…the odds of surviving childhood cancer have improved dramatically. 1 in 5 children still die of childhood cancer, but that means that 80% survive. However, even the “best” types of cancer, the ones with the best statistics, involve treating children with a poison so toxic that parents must protect themselves with gloves when changing the diapers of their own children who are undergoing chemotherapy. Even the “best types” have horror stories.

Despite all of the things I said above, if you meet a child fighting cancer, your life will also forever be changed for the better: You will experience a spirit and resilience like you have never seen. You will see them learn to walk, talk, read, draw, ride a bike, etc. etc. all while fighting for their lives. You will see what a true warrior looks like.

I could go on forever, but I will end with two things:

First, the post I write every September 1, the first day of Childhood Cancer Awareness Month:

“Every September 1, I struggle with how to define myself for Childhood Cancer Awareness Month. Am I a childhood cancer mom? My daughter has been in remission for more than 15 years. People mistakenly look at that and assume she is "cured". They assume I must be "so relieved" to know that cancer is "gone". I guess I will start off Childhood Cancer Awareness month by reconciling that notion. I am not "so relieved". I am always vigilant. Childhood cancer is the type of thing that steals constantly. It steals normal childhood memories and replaces them with others. Some of those memories are still beautiful, but they are different. Still abnormal. Childhood cancer steals normal anxieties about cheerleading tryouts and first dates and replaces them with anxiety about late effects, and blood counts and random bruising, even 15 years out. It steals the ability to fall asleep together on the couch and replaces it with meds and G-tube feeding setup before I fall into bed from exhaustion. Sometimes, childhood cancer comes back to steal your child, even though it is supposed to be gone. So, I am vigilant, and I teach her delicately how to be vigilant without being afraid. Her life is wonderful and beautiful, but there is also physical pain, and emotional heartache of what should have been and what she still has to go through. Everyone who has walked this journey with us is pretty aware of our daily life, and aware that we are thankful to still be here, having this conversation instead of one of mourning. But when you think of childhood cancer, please think past the cute bald kid you saw on the Leukemia Lymphoma Society commercial, because cancer is not cute. It steals a lot of things, and my everyday prayer is that it will leave us alone with its nasty side effects forever.”

Second, a few excerpts from my girl’s college application essay about resilience:

· “I met the inescapable kiss of death before I’d had a chance to live, all because of a number.”

· “Friends inquire if college acceptance rates intimidate me, and for that my answer is simply this: I’ve already walked through fire. I’ve already beat staggering percentages and I will end up exactly where I belong. As I write this essay that determines my future, I reflect on what a blessing it is that I get to have one at all.”

Maria's Cancer Journey

Organizations for Donation during Childhood Cancer Awareness Month (and every day!):

https://www.alexslemonade.org/

https://www.acco.org/

Lora Jackle is a mom of three from Virginia and a Pediatric OT. In addition to Marz, she is mama to Riley and Abby, who happens to have Down syndrome. You can learn more about Lora’s story in her inspiring letter inDear Mama: Stories of an Extra Lucky Life.