The Nuessner family of Four Points: (left to right) Madison, Jennifer, Scot, Lauren, and, in front, Ridge.
By KIM ESTES, Four Points News
Incoming Vandegrift senior and member of the Legacies dance team, Madison Nuessner was diagnosed with brain cancer in July. Madison has been walking through the biggest challenge she’s ever faced with her parents, Scot and Jennifer Nuessner, by her side.
“Everyone has been very supportive and loving through all of this,” said Madison, 17, of the diagnosis.
“I have found myself wanting to spend more time with my parents, they love me so much … but my friends have all been amazing support as well. Everyone has been just so good to me. The nurse at Dell Children’s said I set a record for the most visitors in one room! I am very blessed to have loving friends and family,” she added.
Cancer is complex
Madison reported she thinks her prognosis is “good” because the cancer was caught early.
However, following surgery by a local physician to “burn out” the tumor, testing at MD Anderson’s Children’s Cancer Hospital in Houston showed it as a type of brain cancer that tends to grow microscopic tentacles and is difficult to resolve with surgery alone.
In September, the Nuessners will meet with Madison’s MDA oncologist to review the post-surgical MRI. “If the entire tumor is gone we may be able to just monitor with an MRI every two months. If some tumor is left, or if it begins to grow again, we will have to explore further treatment options,” she said.
Madison Nuessner
Being brave & focused
“This type of cancer does tend to come back and often it is more aggressive, so we will have to find the best medical team and have a plan for when this occurs,” Madison said.
In the meantime, she and her family – including 16-year-old sister, Lauren, and 7-year-old brother, Ridge, are adopting some lifestyle changes including a low-sugar diet.
“I have cut almost all sugar out of my diet, focusing on less than 30 carbohydrates in a day. I have read that sugar feeds tumors,” she said. “My whole family is on board with this except my 7-year-old brother, who is not a fan.”
She and her mother also want to learn to meditate to “find a calm in the storm”, and the family will soon start counseling with a specialist in chronic illness.
Support systems help
However, these are not the only changes in the Nuessner family since Madison’s diagnosis.
Jennifer, a physician’s assistant, said, “After Madison was diagnosed, I quit my job to be more available for her and my other two children.
“My goal in staying home is to find the best doctors, the most advanced treatments and to be available for whatever our family needs. It is important to me to be with her not only for medical support but for moral support as well,” she said.
The family is insured through Scot’s employer, SAIA LTL Freight, for whom he is a district sales manager. “So far Madison’s treatments have been very conventional and have been covered after meeting the copay and deductible expenses,” said Jennifer.
Nevertheless, Jennifer’s sabbatical cut the Nuessner’s income by half. Subsequently, they anticipate limited access to treatment options due to a lack of cash. “This is the reason we have decided to accept donations that have so generously been offered,” she said.
“All of the money collected has been set aside in an account specifically named ‘Madison’s medical fund’,” Jennifer said. It will fund medical copays, hotel stays, bimonthly MRI deductibles, lab fees, travel expenses, hospital costs and non-traditional therapies not covered by insurance, like immunotherapy.
Madison gets a hug from her 7-year-old brother, Ridge. Jennifer Nuessner says Ridge doesn’t understand Madison’s illness, but he now offers hugs to both his sisters every time he sees them.
Raising funds
Thus far, fundraisers have included a lemonade stand sponsored by River Place residents, Janel and Kevin Broe, in honor of their son, Pierce, who died from a cancerous brain tumor in 2014.
“We were all there along with my parents and it was beautiful. She even set out a ‘Madi Mailbox’ where dozens of notes of encouragement were collected. It was the most beautiful lemonade stand I have ever seen, and for them to honor my Madison was just as touching,” Jennifer said.
Jennifer created a new Facebook group “Mad Love for Madison – Go Gray!” to keep the public updated on community fundraisers or changes in her condition.
There are several online fundraisers in the works.
On the Go Fund Me page, where almost $9,000 has been donated, participants can search for “Madi’s Road to Recovery” to contribute.
Madison’s friends, sisters Madison and Emily Finfrock, opened an online Etsy store to sell necklaces with all the proceeds benefitting the medical fund. Search for “madisonfinfrock” on the Etsy page to participate.
There is a T-shirt fundraiser for Madison at: http://azmonogram.com/madison-love-tee/
and the family is grateful for any in-kind donation.
“Our focus is now to lower her stress level and teach her to meditate. Anyone with knowledge and a willingness to donate meditation training, essential oils, yoga, massage therapy or chi quong would be ideal,” Jennifer said.
“Support and love from family and friends have gotten us this far; we do feel we have a great support system,” she said.