By Kalena Arif
Kallie Kramp, of Willowick, is described as a vibrant, happy-go-lucky 8-year-old girl who is active in dance, Girl Scouts and softball. Her mom, Jennifer Kramp says that while she’s still her witty self, in January 2015, Kallie’s life took a drastic change when she was diagnosed with neuroblastoma, a form of pediatric cancer that attacks nerve cells.
“Kallie was a very healthy child,” Kramp says. “She had only ever had one cold, one ear infection, one bout with strep throat and pink eye just once (up to that time).”
Looking back at how it all began, Kramp says that Kallie experienced digestion issues, but she was never diagnosed or treated for anything of major concern.
In 2013, Kallie was tested for Celiac Disease, an immune reaction to eating gluten — a protein found in wheat, barley and rye — but tests came back negative. The following year, she was taken to the emergency room with symptoms of what appeared to her parents as a possible case of appendicitis. There, she had an x-ray and went home under the impression that everything was normal.
“After that ER trip, Kallie experienced intermittent leg pain, but we thought it was just growing pains,” Kramp says. “It wasn’t until January 2015, when she started complaining of severe leg pain, that we took her back to the doctor.”
A follow-up appointment with her pediatrician led to more questions when the family was told that Kallie’s x-rays and blood work were normal, although she had developed a rash on her leg that resembled HSP, a disorder that causes inflammation and bleeding in the small blood vessels and affects the skin, joints, intestines and kidneys.
Days later, Kallie was back at the doctor and they thought her kidneys were being affected by HSP, but again tests didn’t indicate a problem. An ultrasound was ordered. It showed a 15-centimeter mass, which a CT scan later determined was cancerous; the cancer also had spread from her pelvis to her bone marrow and other bones.
Learning that your child has cancer would be heartbreaking for any parent, but it was especially hard on Kramp, who lost her mother in 2009 to melanoma. In addition, Kallie’s paternal grandmother is a breast cancer survivor.
Breaking the news to Kallie was extremely difficult because she was well aware of what cancer was.
“It took me two weeks to even use the ‘c-word’ with her,” Kramp says, recalling the conversation. “I told her it was a different type of cancer than what her Grandma Nancy had and that kids beat this. I tried to stay optimistic.”
Doctors explained that it was curable and Kramp turned her thoughts to Kallie’s treatment.
She says the treatment plan for Kallie involved multiple rounds of chemotherapy, radiation and several intense surgeries.
“The road ahead was tough, but she is a fighter and an inspiration to many,” Kramp says. “Her treatments were incredibly harsh and she hated them. I try very hard to be honest with her so that she can trust me. I told her that we were going to use everything to beat this.”
Every three weeks, Kallie had a one-week hospital stay. Everything became more intense. Small things like having a fever became an emergency and then she had a bowel obstruction, which called for a seven-week admission. Then she had a stem cell transplant complication, which meant another eight weeks at the hospital.
“Regarding the stem cell transplant, we really wanted to deal with this once and never have to deal with it again…so even though it was harsher, we wanted to treat it more aggressively,” Kramp says.
In all, Kallie went through 12 rounds of radiation, six rounds of high dose chemotherapy, a stem cell transplant, nine-hour surgery to remove the tumor, antibody therapy, and five-hour surgery for a bowel obstruction caused by scar tissue from the previous surgery.
“Her behavior has definitely changed,” Kramp says. “She became more withdrawn and shy than she used to be, but she developed a ‘This is what I have to do’ attitude to deal with it all.”
Throughout Kallie’s journey, her family has helped her and each other be strong as they faced the many challenges together. Her little sister, soon-to-be 3-year-old Klaire, has been right by her side as much as possible and her grandmother helps as much as she can.
Kramp says that cancer changes everything. She and her husband have developed very distinct roles to deal with their new reality.
“I took on the more social role of reaching out to other families to try and get their perspective on which centers to attend,” she says. “My husband has done a lot of the research. I think it changes you as a person. A lot of our time has been dedicated to getting through this; our babysitting resources for hospital stays means that date night isn’t a top priority.”
Before Kallie was diagnosed, Kramp says that she used to look on social media at other sick kids’ pages and thought it was too sad, but she soon found herself following other children’s cancer stories online. This led to her developing the Prayers For Kallie page on Facebook.
“I had stopped looking at all of the pages because it was easier, but I realized that when people turn away because it’s too hard, then legislation doesn’t change,” she says, referring to legislation that will help secure funding toward all pediatric cancer research. “A lot of people were texting and calling and we were constantly going from one part of the hospital to the next, and this was a way to update everyone at once.
“Writing has become therapeutic,” Kramp continues. “I can express myself better in writing than I can in spoken words. It’s a way to let it out and get other people to pray for her. I realized how important the prayer aspect was. When she is doing well, I try to draw attention to the lack of funding for pediatric cancer research.”
Pediatric cancers represent 1 percent of all new cancers diagnosed in the U.S., according to the American Cancer Society.
neuroblastoma is one of the most common cancers in children ages 0-14.
Not only do children have to feel the emotional and physical effects of cancer, afterward, two-thirds of children with pediatric cancers can suffer long-term effects from their treatment including loss of hearing and sight, heart disease, learning disabilities and more.
With new cases each year, (it’s estimated that 10,380 children in the U.S. ages 15 and younger will be diagnosed with cancer in 2016, according to the American Cancer Society)
more funding and research is needed to help fight childhood cancer. However, many say funding research is lacking as adult cancers are receiving comparatively more each year.
Although Kallie is doing much better and is starting to get back to some regular activities, it isn’t clear if her battle with cancer can be declared as over.
A recent bone marrow biopsy showed mature cells; their presence means that she isn’t technically considered in remission. Kramp says the good thing is that there are no signs of immature nerve cells, whose growth would be of major concern.
Kramp says that life is beginning to go back to normal. This summer, Kallie played softball and started hip-hop dance lessons. She started third grade this year and is looking forward to swimming, which she can do once her immune system is a little stronger.