Fifth grade — it’s a major milestone for students and families, alike. The start of fifth grade marks the end of the elementary years and for Avery Kiehl, it marked the beginning of her life after her brain tumor.
Avery was diagnosed in the midst of her third grade year at her routine check-up with her pediatrician. Concerns about her lack of growth and development were at the forefront of the appointment.
“She just wasn’t growing,” said Tiffany, Avery’s mother. “She was very small, and the pediatrician recommended we visit a neurosurgeon for an MRI.”
“The MRI came back showing a rare, benign tumor with the ability to damage Avery’s brain function. The tumor set on her pituitary gland, which is located at the base of the brain and is approximately the size of a pea. This small gland controls the body’s hormones, such as growth, as well as the body’s blood pressure, thyroid glands, metabolism, pain relief and certain functions of the kidneys.
“The neurosurgeon said that if it was his child, he would take her to St. Jude,” said Tiffany. “So, he made the referral and sent Avery’s medical records and we were accepted in January of 2014.”
St. Jude Children’s Research Hospital believes in advancing cures through research and treatment for all children, regardless of their race, religion or a family’s ability to pay. Doctors specialize in all areas of care, researching and sharing their knowledge, all while ensuring that no family ever receives a bill.
“We knew they were the best experts for our daughter,” said Tiffany.
After arriving at St. Jude’s main campus in Memphis, Tenn., Avery underwent brain surgery and true to the St. Jude promise, her family was provided housing, food and all the essential amenities to help them feel at home.
“You know where you are going when you get there,” said Tiffany. “It takes the stress out of parent life because you have housing, food and an amazing level of care with no financial burden.”
In addition to surgery, Avery and her family also traveled to Jacksonville, Fla., where she received six weeks of proton-beam radiation therapy at the University of Florida. The specialized treatment minimizes the radiation from setting into other areas of the brain and according to Tiffany, without it there is a 100 percent chance of regrowth.
While Avery and her medical team fought to get the tumor out of body and off her brain’s “master gland,” the rest of the Kiehl family was trying to find the silver lining that is the St. Jude community.
“There is such a comradery at St. Jude. Everyone there is going through a similar crisis with their kiddo, and it’s nice to have that bond,” Tiffany said.
Now, nearly a year and half since Avery’s diagnosis, the Kiehl family is back home in Kansas City and continuing to work on keeping their daughter healthy.
“On the outside, she looks amazing and you’d never know she had a brain tumor,” exclaimed Tiffany. “But on the inside, it’s different and people don’t always understand that.”
Avery requires daily hormone shots, as well thyroid medicines, kidney medicines and cortisol supplements. She also suffers from memory loss and struggles with problem solving, but according to Tiffany, St. Jude is there to help with all of that too.
“We are working with their School Program, too. They are our support system. I know they are only a call away and they are already anticipating her needs and help prepare us for those,” said Tiffany. “At St. Jude, the right hand knows exactly what the left hand is doing, even when we see three different doctors in the same day. It allows me to be an advocate for my child.”
The Kiehl family will continue to travel to Memphis for routine check-ups and continued treatment as Avery grows and faces new obstacles, but for them, they are happy to do it.
“I don’t know where we would be without St. Jude,” said Tiffany. “It’s hard to imagine because they are such a part of our life. I think we would just be fumbling around, lost with no direction and wondering what else is out there.”
“The outcome Avery has experienced would be much different,” added Brad, Avery’s father.
“Yes, we definitely made the right choice and came out well ahead.”
On Sept. 26, the Kiehl’s will be doing their part to give back to the organization that forever changed their daughter’s life, by participating in the St. Jude Walk/Run to End Childhood Cancer in Kansas City. This will be their first year joining the effort and they are excited to be involved and working on building Avery’s team.
Join the Kiehls, as well as Kansas City Moms Blog, in raising money and awareness for St. Jude’s Children’s Research Hospital.
