It's been a long road for Jacob Gladbach and his family since "day zero." But he doesn't want to dwell on his struggles in his battle with the genetic disease adrenoleukodystrophy, or ALD, and he looks forward to having a level of physical independence that might match his tenacious, defiant spirit.
Aug. 9, 2018, was now 15-year-old Jacob's day zero — the day of his bone marrow transplant that so far seems to have been successful in combating the ALD he was diagnosed with last May.
"Don't show my sad times," he told his mom, Christy, when she offered to show pictures of his shaved head from when he was at St. Louis Children's Hospital. His hair has since grown back since the chemotherapy that came before the transplant — curlier than it used to be.
Jacob can't play football again — he had planned on being on the team at Helias Catholic High School, where he would have been last fall if not for the ALD — but said he's still a "pile-driver." That is, "I tend to run through pain."
He's unfortunately known a lot of pain — the side effects of chemotherapy; infections because of his suppressed, vulnerable immune system; frequent blood work and other ongoing tests and treatments; and the loss of his eyesight, which is why his right wrist was wrapped Saturday on account of a tumble down some stairs.
Despite all of that, his dad, Stephen, said "right now is what I would have picked" for best-case scenario, compared to all the uncertainty the family had back in June, when the News Tribune last spoke with the Gladbachs. Jacob's eyesight has gotten worse, but he can walk.
ALD is caused by a genetic mutation that causes the body to not produce a protein that normally breaks down a certain metabolic byproduct. Without any of the protein to keep it in check, the substance builds up around the body's central nervous system — the brain and spinal cord — and the immune response that's eventually triggered also attacks the sheaths around the nerve cells.
That means nerve cells in the brain — such as optic nerves — and that control muscles start to fail, which can cause mental and physical deterioration that ends in a vegetative state or death. The disease affects about one of every 18,000 people, and most severely affects boys and men.
The Gladbachs didn't know in June who the donor would be for Jacob's transplant to try to stop the disease's progress; it ended up being Stephen.
They didn't know then when Jacob might be back in school. He's being home-schooled now, and the hope is he'll be at either Helias or in Jefferson City Public Schools in the fall, depending where he can get better accommodations.
The Gladbachs didn't know in June what their financial straits would be with the anticipated medical expenses. Christy said the bill at St. Louis Children's was $2 million, but insurance has covered most of it.
Still, even a small percentage of $2 million would not be a trivial amount.
The Gladbachs reflected on all of it Saturday in the banquet hall of Bones Restaurant and Lounge, ahead of a trivia night to raise money for their family. Stephen works at Bones, as well as at the Missouri State Public Health Laboratory; Christy is back to being at JCMG full-time.
Stephen said the Jefferson City community "has been wonderful" in supporting the family. As just a couple examples, Stephen said a barbecue rib fundraiser netted more than $13,000, and Saturday's trivia night was full, with 160 people signed up — eight people to a team at $120 a team.
The event was also another chance for Jacob to get out of the house; "it's still limited, who I can hang out with" because of the state of his immune system, he said.
He has gone to a movie with friends —"Holmes and Watson." "The Shawshank Redemption" is his favorite movie. He listens to a lot of television, including the "The Good Place" and "The Story of God with Morgan Freeman."
Jacob was wearing two pendants around his neck Saturday. Next to his chest were St. Lucy — patron saint of the blind — and St. Michael. St. Michael the Archangel's patronages include people who have an illness.
Jacob has another form of support by his side at home — his cat, Butters, one of the family's four felines. Jacob said Butters is his emotional support animal, and the tabby cat means "almost everything" to him, as it's there on his good days and bad days.
He doesn't have a previously promised pet bird — no birds are allowed around him for a year, because of the diseases they can carry.
Jacob does not want to be pitied, and clearly just wants some normalcy again.
"I don't remember it by choice," he said of not remembering much of being in the hospital in St. Louis.
"It was hell, but he did good," Christy said.