Families that Inspire
In 2013, our then four-year-old daughter Kallie was diagnosed with brain cancer. It was the
most devastating diagnosis a parent could ever receive. Kallie was just a month shy of five years old; she was excelling in school and was a bubbly bouncy girl who enjoyed every moment of life.
Two surgeries later, a long hospital stay and a trip to Boston for treatment, Kallie continues to recover. She’s now seven-years-old and loves first grade. She’s nearly two years cancer free and continues with MRI scans every three months along with hours of therapy sessions each week.
Her second surgery saved her life, but it would also bring many challenges. From having to help her re-learn to walk and talk, to doing basic things that used to come so easy for her, the journey hasn’t been easy.
When I think of families that inspire, I don’t think of my family. I think of so many others. When you are put in a situation like this, you do all you can to advocate for your child and give them the best possible chance to succeed in life. You go on adrenaline for days, weeks, months and years. You change in ways that are hard to describe.
In this issue, we’ll introduce you to some local families that inspire us. These families, like many others, have amazing stories to share and we hope they’ll inspire you.
Imagine struggling for months, knowing something wasn’t quite right with your child. Several doctors appointments, unexplained symptoms including horrible fevers, swelling, dark under-eye circles and the energy of a normal two and a half year old, non-existent.
This is the beginning of Nieva’s story. It’s a story that comes with ups and downs and many moments of uncertainty.
“My husband, Jordon and I were both in such shock,” said Amanda as she remembers getting the dreaded news from doctors.
Nieva was diagnosed with Acute Lymphoblastic Leukemia in May of 2013. It was a day that changed Nieva’s family forever. But, it would get worse before it would get better for the Sioux Falls family.
“In April of 2015, with just three months left of her rigorous two year treatment regimen, Nieva contracted chickenpox,” said Amanda. “The chickenpox spread, her lungs failed and she was intubated and put on ventilators for nine days. We almost lost her.”
Nieva pulled through, but getting back to her old self would take time.
“When she came out of intubation, it took over a week for her to come back to us cognitively,” said Amanda. “We were dealing with a very rare and strange scenario.”
After struggles keeping the chickenpox at bay because of Nieva’s weakened immune system, integrative therapies and new medications helped clear things up in July of 2015.
Through this journey, Jordon and Amanda learned quickly that your adrenaline in a crisis like this would only last for so long.
“You are not superman and you are not superwoman,” said Amanda. “You will do everything you can all day, all night, as long as you can, but you can only do that for so long.”
Looking back and looking to the future, Nieva’s family is forever changed in many ways.
“Our family used to always be rushing and very busy. But all the long hours added stress and unhealthy habits,” said Amanda. “We didn’t have time to eat right, exercise, keep the house clean, or interact much as a family.”
On diagnosis day the family crashed.
“I remember how meaningless stuff felt after Nieva was diagnosed,” said Amanda. “I’d walk through rooms and feel a deep knot forming.”
It was the realization that no possession could ever compare to Nieva. Since then, the family has worked on getting rid of excess items from their home. They’ve also altered work schedules. Amanda is a local photographer and has cut back on her workload and Jordon has done the same.
“I think as a family we feel we have been given a second chance,” said Amanda. “We’ve discovered what’s truly important.”
Caj’monai’s Fight for Life
Meet Caj’monai. She’s the twin sister to Cashmeire and a vibrant eight-year-old girl who thoroughly loves life. The past eight years of Caj’monai’s life have been anything but a breeze. Carrie, the girls’ mother remembers the journey well.
“Cashmeire and Caj’monai joined our family at 15 days old, said Carrie. “Cashmeire came home from the hospital on day 15 and Caj’monai needed to have open-heart surgery and a feeding tube placed so she was welcomed home at three months old. Although they are twins, Caj’monai was gifted with an extra chromosome that would educate us all on the blessings, as well as obstacles that would come with Down syndrome.”
Caj’monai had five hospital stays in her first year of life and many challenges each year after.
“Respiratory infections were life challenging,” said Carrie. “Hospital visits were long and gruesome, but Caj’monai always seemed to fight through them.”
Her fight for life has paid off. She’s now a vibrant eight-year-old who goes to birthday parties with her classmates, is on top of the pyramids in her cheer squad and swims in the pool like a fish.
Travis and Carrie Geppert are parenting a blended family with nine children and while Caj’monai has some special needs, the couple say it’s about all of their children.
“All of our children have unique needs,” said Carrie. “ Caj’monai’s needs might seem a little more obvious to others, but it’s important to recognize all of our children’s needs. The standards for a quality life should not changed based on a disability.”
When it comes to overcoming adversity, Carrie says there is always a silver lining.
“Every challenge is an opportunity to grow and build in strength and in character,” said Carrie. “It is a season of pain that no one ever wants to endure, but you’re always wiser in the outcome.”
And something she’s learned along the way is to always try to take up those offers for help.
“Lean on your support system. Others WANT to help,” said Carrie, “they just don’t always know how. Rely on church, friends, family and co-workers.”
In the moments when you question your child’s future, Carrie has this to say.
“Don’t misjudge your child’s capabilities,” said Carrie. “I had no hopes of her eating on her own, walking on her own, or speaking with her voice. Wow did she prove me foolish!”
At 10-years-old, Colby calls himself “unfortunately unlucky.”
His mom and dad, Dave and Stacy Jones, recall some scary moments when Colby was just a few months old.
“We learned that he had severe food allergies after he started to have reactions to food at daycare,” said Stacy. “The older he got, the more food allergies we uncovered.”
Imagine making dinner for your family and trying to cook without many of the staple items most of us take for granted. The Jones family of Brandon has learned to adapt to Colby’s allergies, while keeping his younger sister, Karlee, happy too! Colby’s list of allergens is a long one. He’s allergic to dairy, egg, peanut, peas, raw pears and raw peaches. Doctors tell the family he may outgrow some of his allergies, but it is a long process and there are no guarantees.
Just when the family was in a routine with school and meal planning around Colby, there was another unexpected bump in the road.
“When Colby was in the first grade, we found out he had lost all hearing in his left ear,” said Stacy. “There was no hope of that hearing ever returning.”
The Jones’ did what many parents would do. They wasted no time in finding out what options were available to help their son hear.
“Our only option to at least help him was a Baha Implant surgery,” said Stacy. “The Baha captures sound on one side of his head and transfers the sound into a titanium screw in his skull and then through the bone over to his right ear.”
While the device doesn’t restore hearing, it helps. It cannot be worn all the time, however, so the family is always making modifications to make sure he can hear.
Between Colby’s food allergies and hearing loss, Stacy says she’s learned a lot on this journey.
“I’ve learned to never assume,” said Stacy. “I never assume food is safe in any environment for my son, and I never assume others (especially teachers and day care providers) recognize and remember his hearing loss.”
And just because the family has a handle on the food allergies and has helped Colby adapt to his hearing loss, it doesn’t mean everything is back to normal. The Jones’ will always advocate for their son to make sure his hearing loss doesn’t negatively impact him as he continues to learn and grow.
“We fight a lot of misperception,” said Stacy. “Just because he can hear out of one ear, doesn’t mean it is just fine. It gets old when people say, “Well, at least he has one good ear!” You need two ears to hear effectively, and hearing will ALWAYS be a challenge.”