by Jim Boyle
The halftime show at Elk River High School’s varsity football home opener included a surprise announcement for one local teenager.
Jade Ochu, a member of the Elk River High School pep band, was summoned to the 50-yard line by the public address announcer, John Osterman, as it was revealed she has been granted one of three wishes from Make-A-Wish Minnesota.
With the same gusto Osterman uses to announce Elks’ first downs in a win against Moorhead, he announced the Elk River High School junior from Zimmerman with a rare and life-threatening blood disease will attend the 51st Annual Country Music Association Awards on Nov. 8 at the Bridgestone Arena in Nashville.
Ochu will be given red carpet treatment, according to Karen Zehowski, a volunteer for Make-A-Wish Minnesota from Elk River who has had the pleasure of granting five wishes in four years.
“I am amazed at the strength of these young kids, especially Jade,” Zehowski said.
Ochu, who just turned 16 years old on Aug. 30, is not your typical teenager. She plays four musical instruments (flute, saxophone, guitar and the ukulele) and has performed in five school bands.
She hunts, fishes, competes in archery through her school and enjoys competitive shooting with her family.
She volunteers for organizations that advocate for fallen police officers and their families as her stepfather, Joe Gacke, works in law enforcement.
And she likes to knit with her closest friends.
It takes the edge off when the 16-year-old Zimmerman girl is stressed out about her health that has been compromised ever since she was diagnosed at 18 months of age with systemic mastocytosis, a rare blood disease in which the body produces an excessive amount of mast cells.
Everyone has and needs mast cells, but someone with systemic mastocytosis has so many that their body begins to attack itself. These cells clump together and affect bone marrow, skin, bones, GI tract and organs.
The disease is progressive and although there are medications and treatments to help control the symptoms, there is no cure for systemic mastocytosis.
There are several forms of mastocytosis ranging from a very mild form only affecting the skin called urticaria pigmentosa to the most rare and most severe form acute mast cell leukemia.
“At this point, with the all the testing that has been done, we have no reason to believe that Jade is at risk of developing the cancerous form of mastocytosis,” said Shonna Gacke, Ochu’s mother.
There are several tests needed including blood work, endoscopy, colonoscopy, and bone marrow biopsy used to confirm a diagnosis of different forms of mastocytosis.
Ochu was originally diagnosed with urticaria pigmentosa mastocytosis at about nine months of age as just the physical symptoms of small tumors were present.
As she became a little older, she started experiencing more serious symptoms related to the GI tract, flushing cheeks, fatigue and unexplained pain.
At approximately 18 months of age, she was diagnosed with the indolent form systemic mastocytosis and started treatments of several medications to help minimize symptoms.
“Medications did provide some relief, but her life would be forever changed to minimize reactions and adjust to life with her disease,” Shonna Gacke said.
Mast cell reactions are caused by triggers and they can vary from person to person. Jade’s triggers have included direct sun, heat, cold, rapid changes in temperature, physical activity, processed foods, stress and many allergies.
“Imagine being a kid and avoiding all of those things because they will ultimately make you sick,” Shonna Gacke said.
Ochu’s life has been filled with calculated choices to do something fun, knowing she would pay the price later by being sick for several days after.
The Zimmerman girl, who has a sister, Grace Bean, 18, and two step-siblings, Logan Gacke, 18, and Morgan Gacke, 15, has been able to attend school but was never able to participate in recess, gym, sports, and even field trips.
She became immersed in academics and band.
“Her love of learning and music is incredible,” Shonna Gacke said. “As she became a little older, her symptoms continued to get worse.”
When she was in grade four, she underwent a bone marrow biopsy to get an accurate count of affected cells. Not only was it confirmed she did indeed have systemic mastocytosis, it was then it was determined a more aggressive form of therapy would be required to help slow the progression of the disease.
It was shortly after that test she started immuno-suppressive therapy (oral chemo therapy). Those drugs helped slow the progression, but could not stop it. The medications made her sick all the time, made some of her hair thin or fall out, depleted her of any energy she had, made her more susceptible to illness, and made it very difficult to function at school.
It did help slow the disease for four years, but around the start of the last school year, the disease made a sudden and rapid progression affecting her heart, blood pressure, and vision moving her from the indolent form to an aggressive form of systemic mastocytosis.
It was eventually decided (with the help of her hematologist/oncologist) to end the immuno-suppressive therapy. Ochu is still taking several medications but more focus is being placed on controlling individual symptoms rather than trying to manage the disease as a whole when there is no cure.
“It was a rough year with weeks of missed school, so many doctor appointments and visits to the emergency room, and just a sense of defeat,” Shonna Gacke said.
“That all changed with Make-A-Wish of Minnesota. They met with Jade in the fall of 2016, and they subsequently approved her as a wish kid.
“They gave her hope, joy and something exciting to look forward to,” Gacke said. “All of the doctor appointments didn’t seem so bad anymore, the blood work and tests weren’t as painful, and going through that rough year with the disease wasn’t the only thing on her mind anymore.
“Make-A-Wish helped get her through the worst year of her life.”
Her symptoms have stabilized and she is responding well to the new medications.
“We don’t know what to expect or what her future will look like with her disease,” Shonna Gacke said. “Unless there is a cure, she will continue to experience symptoms and will need to make adjustments to her life as the disease continues to progress.”
Ochu isn’t focused on all that, though. Her desire is to be a kid.
“I just try to put my health aside and live in the moment,” she said on Wednesday. “My health shouldn’t define who I can be.”
She dreams of someday becoming an oncologist, inspired by her own oncologist on a team of more than 10 doctors ranging from a rheumatologist and a nefrologist to a neurologist and cardiologist and several more in between.
“They have gone above and beyond to help Jade and we are so grateful to them,” Shonna Gacke said. “Same with the school district. From Meadowvale to the high school, there have been so many special teachers, nurses, counselors and staff members that have gone above and beyond to provide the tools needed for Jade to be a successful student.
“Jade is an all-around great kid and we are so fortunate to have the support of so many wonderful people in our community following her on her journey navigating life with a serious illness, and there are not enough words to express our gratitude to that organization.” Shonna Gacke said. “Karen is an angel!”
The CMAs will be a special reprieve from the disease. She had no idea until the announcement at halftime she would get her top wish or that she would learn of it in front of a packed stadium on one of the summer’s first chilly nights.
She had finished performing with the pep band, when a fuss began to develop on the field. John Rosner, the band director, had been instructed to keep her at the edge of the field. While looking to see what was going on, Ochu heard her name announced.
Zehowski, members of Ochu’s family and Superintendent Dan Bittman greeted her at midfield.
She’s not sure if her favorite country musician, Garth Brooks, will perform at the awards event, but she has begun to prepare in her mind. She said she plans to wear her expensive pair of cowboy boots and figures she will pick out an outfit for the event at some point.
“It will be nice to do something without limitations and have fun without worrying about my health for a few days,” Ochu said.