Sparta teen strives for normalcy in the face of cancer
It was late October when Ella Konze, a 15-year old freshman at Sparta High School, along with her parents Dan and Katherine and older sister Madeline were told she had an inoperable brain tumor.
Katherine had initially taken Ella to the doctor for facial twitches around her right eye. At first, Ella tested positive for Lyme disease and after four months of treatment, her condition did not improve.
The results of an MRI and brain biopsy then confirmed Ella had a slow growing grade II astrocytoma affecting her brain stem and cerebellum. They found out her brainstem was 45 percent larger than normal, the pressure from which was causing her facial ticks.
Katherine said their initial reaction was fear.
“It was completely shocking. It took a few weeks before we had a day that we didn’t cry. You never want your child to be ill and you never think it could happen to you,” she said. “Your mind automatically goes to the worst possible thing that could happen. It just doesn’t seem fair when it’s somebody that is so young who hasn’t lived their life yet.”
The first area of Ella’s brain affected by the tumor controls her heart, swallowing, speech and breathing. The other portion of her tumor is on the cerebellum, which controls balance and fine motor skills.
Dan said the doctors informed them over the phone while the family was at home in Cataract and they immediately started “googling” Ella’s condition. They did a ton of research to figure out what was going on and what would happen next.
They researched the top hospitals and cancer treatment centers worldwide and reached out to Dana-Farber Cancer Institute in Boston for a second opinion. One of Ella’s doctors in La Crosse trained there and was able to connect with the doctors in Boston.
“We just handled it as what we needed to do. I think knowledge is power and understanding what’s happening on a scientific level is beneficial. For me, it’s cathartic and helpful to be able to explain to Ella what’s going on because she counts on us to tell her what she needs to know,” Katherine said. “It seems like you never hear about brain cancer in children and all of a sudden when it happens it seems like it’s everywhere. Hopefully down the road we’ll be able to utilize this information and help other families to deal with this.”
Ella began radiation in November in an attempt to shrink the tumor. She finished radiation on Dec. 27 and the family took a vacation to Dominican Republic for a period of rest and recuperation since Ella was exhausted from the treatments. On Jan. 29, they went back for another MRI and they discovered there had been progression of the tumor on Ella’s cerebellum.
“It’s hard to say at this point if it’s a reaction to the radiation and the biopsy itself that causes that. It appears that the tumor on her brain stem doesn’t look as dense as it was before so that was a positive sign. They also saw there was more blood flow to the tumor in the cerebellum, which can be good or bad,” Katherine explained. “It could be bad because you don’t want excess bleeding in the brain but we’re hoping it’s positive and that chemotherapy will be more effective and hopefully it will be able to penetrate the brain blood barrier that exists.”
One challenge with brain cancer is medicine needs to be able to get through that membrane in order to be effective in the brain itself. They are hoping with increased blood flow it will be able to carry the chemo and target the cells in the tumor.
“You have to think positive,” Dan said.
Ella began chemotherapy at the beginning of February, which she will continue for the next nine months. In two months she will have another MRI to check her progress. Since starting chemotherapy, the family is taking precautions as far as avoiding any sickness now that Ella’s immune system is weaker.
“Ella is the reason I got my first flu shot,” Dan joked.
“Well, I got six shots in one day,” retorted Ella with very little sympathy for her dad.
Ella hasn’t lost her sense of humor through all of this. Maintaining as much normalcy as possible is her top priority. She wants to try to remain in school and spend time with her friends, as her social life is very important to her.
“She has a great quality of life and we want to ensure that she keeps that. It’s not us going through this, it’s Ella,” Katherine said. “Right now we’d just prefer to keep her in a bubble. Keep her at home and never let her out of the house.”
Ella made it clear that that is not going to happen.
“You can still have fun but you can’t do the things you like,” Ella said with sarcasm in response to her doctor’s recommendation to avoid activities such as snowmobiling, horseback riding and four-wheeling.
The Konze family has been amazed at the outpouring of support from friends, family and even strangers. Numerous fundraisers and benefits have been held for the family in an effort to raise funds to go toward the cost of medical expenses and transportation to and from the hospitals in Rochester and La Crosse.
“It has been amazing. It has been so immensely helpful and it’s not just the money that’s helpful but the support and positive feedback,” Katherine said. “We are just so grateful.”
“It’s awesome,” Dan agreed. “We just can’t even begin to express our gratitude.”
Dan’s extended family will be hosting a benefit for Ella at Jake’s Northwoods on Saturday, Feb. 24 from 2 to 7 p.m. with live music by the Merry Weathers. There will be food available, live auctions and basket raffles as well as a pie auction by the Cataract Gals. For more information, please call (608) 269-6464.