For eight-year-old Jacob Kowalik, a 2009 bone marrow transplant to help cure the Myelodysplastic Syndrome (MDS) Pre-leukemia AML he was diagnosed with at age five was supposed to be a solution that instead created a whole host of new obstacles for the Highland School student.
After the bone marrow transplant, Jacob was diagnosed with Graft-Versus-Host Disease (GVHD), a complication that occurs after procedures such as bone marrow transplants in which white blood cells in the donated marrow reject the recipient. There's no official “cure” for GVHD, but there is treatment, and doctors believe the GVHD Jacob is dealing with will go away at some point.
When Jacob's GVHD will go away, though, is anyone's guess. GVHD typically comes in two varieties: chronic and acute. Acute GVHD usually occurs within the first 100 days post-transplant. Chronic GVHD appears after the first 100 days, and three years after his bone marrow transplant, Jacob has experienced both acute and chronic GVHD. Doctors say Jacob's recovery could take one year, or it could take ten. The problem, as Jacob's mother Jen puts it, is there's only a small niche of doctors specializing in GVHD, so there's not a lot of opportunities to compare the treatment Jacob is receiving against the approaches of other doctors and institutions.
“There's no cure for him now,” Jen said. “There's treatment, and we just treat him to make him comfortable.”
When Jacob was initially diagnosed with GVHD, it hit his stomach organs first, causing him to shed his intestinal lining—like a lizard shedding its skin, Jen said—which resulted in Jacob being in the hospital for 100 days. After the stomach, it affected his eyes, forcing him to have cataract surgery. The GVHD also killed off all of Jacob's hair follicles, and because of difficultly eating and nutritional deficiencies Jacob's diet is supplemented by a nutrition IV bag every night for 10 hours.
Additionally, GVHD tends to dry out the body, which has had a severe effect on Jacob's skin. When Jacob first contracted GVHD, he ended up in the Intensive Care Unit as a burn victim from his skin burning and flaring. Jacob's body had to be wrapped in vaseline gauzes. Jacob's skin—though still black and tan in color—is much better now than it was, but still requires Jacob to be fully-moisturized every morning and night.
Despite a schedule that is seemingly filled with more doctor appointments than free time, Jacob makes the most of his downtime as an avid fan of music, art and soccer. Though Jacob can't play soccer as much as he'd like—he doesn't have the strength or speed of other eight-year-olds—he's really taking a liking to music and art, Jen said.
“He's a free spirit and art and music therapy really got him through the bad times and it's been following [him] ever since,” Jen said.
Jacob likes coloring and painting, and loves looking at art. His painting has been curbed by the side-effects of being on steroids for the past two years as his hands are tightening up and curling, forcing him to wear a hand brace at night to straighten them. His mom Jen is hopeful he'll be able to get back to painting by summer.
Jacob also enjoys school...when he gets to attend. A student at Highland, Jacob's schooling is sometimes interrupted by ailments and treatments. To that end, Highland offered an at home tutor because lately Jacob has been out of school more than he's been in.
“Highland has been just fantastic with him,” Jen said.
Despite the long, arduous process Jacob and his family have had to go through since his bone marrow transplant in 2009, Jen is hopeful it will come to an end.
“They [the doctors] do think he'll make a full recovery,” Jen said. “It's just a matter of when, and it's definitely better now than it was when it started.”
Recenly, the Downers Grove Police Department and other village employees shaved their heads for St. Baldrick's in a fund-raising effort for Jacob. To see photos from that event, CLICK HERE. To make a St. Baldrick's donation in support of DGPD's efforts and Jacob, CLICK HERE.