No couple should have to discuss end-of-life scenarios with their doctor — for their 13-month-old child.
It's a stark and utterly unfair topic Angie and Tony Maxberry, of unincorporated Valparaiso, recently had to address with a doctor at Comer Children's hospital in Chicago regarding their son Lincoln.
A month removed from his first birthday, Lincoln is in the throes of debilitating chemotherapy treatment as doctor's race to save him from acute lymphoblastic leukemia, a cancer of the blood and bone marrow.
While the prognosis for treating this form of cancer in children is generally good, Lincoln is at high risk because of factors in his white blood cells, Angie told me Thursday as she sat by her little boy's hospital bedside at the University of Chicago hospital campus.
His body is laden with otherwise unexplained bruises — a trademark of the condition. Irritable and unhinged crying violently fluctuates with a lethargy uncharacteristic of this previously rambunctious 1-year-old.
It's not right, and it's not fair.
But right and fair have nothing to do with childhood cancer.
I've repeatedly written — in both past investigative reports and columns — that cancer remains one of the biggest killers of our Region youth.
I've interviewed far too many parents who have lost children at the ages of 3 or younger to cancer.
It's why for the past three years I've joined hundreds of other Region men, women and children — and thousands nationwide — in shaving my head and facial hair clean to raise money for childhood cancer research.
It's central to why I ask anyone reading these words to follow the donation information attached to this column as I raise money for what I hope to be a very expensive haircut and shave with the St. Baldrick's Foundation in March.
Consider the epic struggle of 13-month-old Lincoln, of Valparaiso, as your motivation.
Processing the unthinkable
Angie Maxberry sat exhausted in Lincoln's hospital room Thursday.
The day prior, Lincoln underwent his second chemotherapy treatment since his Jan. 22 cancer diagnosis.
Though he appeared to be tolerating the chemo at first, the immune-zapping properties of the cancer-fighting agent opened the door for flu to infect Lincoln's already struggling system.
He spiked a 104-degree fever Wednesday night and had to be rushed from Valpo to Comers for inpatient care.
It's not the first time Lincoln's parents found themselves in a race to bring the little boy to that facility.
The harbinger of this repugnant disease began with unexplained bruising on Lincoln's body in mid-January, Angie explained.
"At first we didn't think much of it," Angie said. "He's been a very rambunctious baby. He would run into walls playing, and always had bruises."
But after the New Year, the marks became different, with seemingly no reason behind them.
One day during a short drive to the store, bruises developed on Lincoln's face as if out of nowhere.
Frequent nosebleeds also emerged in the little boy.
Drawing on her medical knowledge, Angie, a respiratory therapist, began to fear the worst.
Medical tests on Jan. 22 confirmed those fears. Lincoln had leukemia.
Doctors urged Lincoln's parents to rush him to Comer for immediate treatment.
A warning and call to action
While still very much in the fight to save Lincoln's life, Angie noted a very painful discussion she and her husband recently had with doctors.
"We had to discuss end-of-life scenarios if this doesn't work and what our wishes are," Angie said. "It's so surreal that our once healthy, pain-in-the-butt 13-month-old is now so sick.
Angie hopes Lincoln's story stands as a warning to other parents to get medical opinions and treatment for unexplained bruising or other signs of illness.
She also hopes her son's struggle inspires others to give of their resources in the battle to end such future struggles for other children.
In past years, I've made light of my participation in the St. Baldrick's head-shaving fundraiser for childhood cancer research.
While watching my dome and face go bald is inherently funny, the struggle we're trying to help prevent is not.
This year, I vow to go bald to fight one of the biggest unfair realities in our society — that any child should be robbed of their health or ability to realize their dreams because of cancer.
I'll shave not just for Lincoln, but for his 35-year-old parents, a respiratory therapist and construction worker, who don't deserve to watch this happen to their precious son.
And I ask you to help by donating to this invaluable cause.
I expend copious amounts of ink urging fellow Region residents to stand up against injustice. This message today is no different.