Help families like Addi’s!
Neuroblastoma is an extremely rare form of cancer – fewer than 1,000 cases per year in the United States – and typically diagnosed in children under five. When Addi was diagnosed as a 14-year-old…doctors said it was a dire situation.
“But my mom said, ‘I’m not going to let you die.’”
Fall of her freshman year of high school, Addi was heavily involved in activities, such as softball and choir. She started to develop unusual symptoms: thigh, shoulder, and stomach pain, shortness of breath, and more. A hospital visit and x-ray analysis did not provide any answers; her issues were simply considered growing pains.
“She was never a sick kid, but all school year, she was exhausted and warm; she had no energy,” said Cassie, Addi’s mom.
But one symptom was unexplainable and very concerning.
“I said to my husband, ‘That’s not normal,’” said Cassie, Addi’s mom. “He looked at me and said, ‘No…no it’s not.’”
Addi developed a lump on her abdomen. She originally considered it a potential injury or a part of her ribcage, but it continued to grow and become more sensitive. A visit to the emergency room – complete with an ultrasound and CT scan – revealed the devastating truth: it was a tumor and Addi had cancer. They did not know what type of cancer, but they categorized it as a small-blue-round-cell tumor; which is, once again, more common in younger children.
All they knew was…it was very serious.
After a biopsy at a hospital close to home, results were sent to multiple hospitals, including Mayo Clinic in Rochester.
“As soon as we heard Mayo Clinic, we knew it’s where she needed to be,” Cassie said.
The family has generational experience with Mayo – Addi’s grandfather had many health issues evaluated, including his heart following a quadruple bypass – so her grandmother was adamant they needed to be in Rochester. She was on the first flight from Florida and stayed with Cassie and Addi for months.
“We didn’t know what to do; it was a complete blur,” said Cassie. “But my mom knew what to do; she was such a great support.”
Upon arrival, Addi was assessed and scheduled for six appointments with oncology. After only one day at Mayo Clinic…a devastating answer: neuroblastoma.
“They said if we would have found it any later, I would have died,” said Addi. “I would not be here today without my mom and grandma.”
She had immediate surgery to put in a port and preserve her fertility and less than 24 hours later she started chemotherapy. As she was recovering from one thing…she would start the next thing. The initial phase of cancer treatment, known as induction chemotherapy, aims to destroy as many cancer cells as possible. For Addi…it was unsuccessful.
“She was going in the wrong direction,” Cassie said. “I was losing my daughter. So, I called Memorial Sloan Kettering Cancer Center; they deal with extremely rare cases of neuroblastoma. They linked arms with Mayo Clinic and came up with a plan.”
The plan was a course correction, switching from chemotherapy to immunotherapy. And it saved her life. Addi responded positively, and after six rounds, she had surgery to remove the tumor. The doctor was concerned she would lose a kidney in the process. In the end, they removed 90% of the tumor without any collateral damage.
Since her successful surgery, Addi completed two more rounds of immunotherapy and was scheduled for 30 rounds of proton beam radiation therapy.
“She is flying through it,” said Cassie. “Her counts are good, her port is out, and the final phase is on the calendar.”
And while Addi has been on her 12-stay, 115-night medical journey…they have stayed at the Ronald McDonald House in Rochester. Cassie said they had heard the name, but did not know much about the Ronald McDonald House. And while it was “so much like home,” it is the people who made a lasting impact.
“It’s hard; medical journeys are very hard,” Cassie said. “The staff and volunteers make the worst days feel less depressing.”
Aside from the general amenities of the House, which provided some normalcy, Addi and Cassie experienced many core memories during their stay. Because of the treatments, Addi was losing her hair. Cassie – who owns her own salon – cut her daughter’s waist-long hair at the House. Addi would later shave her head with her best friend while she was back home.
Addi also enjoyed all the activities the House offered, such as painting with the Visiting Artists program and Paw Pals, especially with Jack.
“It’s so easy to get discouraged,” said Cassie. “But do a load of laundry, take a shower, work out, make a cup of coffee; whatever is part of your routine at home, and it can be part of your routine at the House.”
“Having an overwhelming medical diagnosis is hard enough, but you factor in where to stay, what to eat, and how to afford it… We did not have a backup plan for this situation.”
“The House became more than our family’s backup plan; it became our home.”
As for Addi, after she completes radiation therapy, she hopes she can return to in-person high school for the final months of her sophomore year, before celebrating with her best friend at a music festival, and spending as much time as she can on the water this summer.
“As long as there is no relapse, long-term outlook is great,” Cassie said. “And once she hits the five-year mark, prognosis is fantastic.”
“The Ronald McDonald House, Mayo Clinic, Memorial Sloan Kettering…it saved my daughter’s life. It saved our lives.”
