Emmy Olson was nearly 2 when cancer took her life.
Her parents, Ryan and Tracie, Janesville, were married in 2010. At the time, their oldest child, Conner, was 2. The couple envisioned a larger family, but medical complications were interfering with expectations, Tracie said.
Grateful for the child they had, the family embraced life as three, but triumphs sometimes come unexpectedly: in March of 2016, Avery was born, and one year later, in March of 2017, the family welcomed Emmy.
Six months later, as Emmy began to sit, Tracie noticed something unusual: the happy and playful baby leaned to one side.
A yearlong battle with germ cell cancer followed. Emmy succumbed in February.
Her family wanted to honor her memory while helping other families with terminally ill children create happy memories. They formed Emmy’s Wish, Inc., a nonprofit organization that helps fund requests, most often, Tracie said, in the form of family trips to Disney World. The nonprofit focuses on children and their families who might not otherwise find resources. Other wish-oriented foundations do not grant wishes to children under the age of 2 1/2, Tracie said.
Families with terminally ill children, even very young ones, want in earnest to make happy family memories while the whole family can still participate, both Ryan and Tracie said.
Connection to family
Ryan, a Milton native and 2003 graduate of Milton High School, and Tracie, a Janesville native and 2007 graduate of Craig High School, met at a dart-throwing tournament in Janesville.
Both are skilled at the game, Tracie said, noting Ryan’s “pro status” and inclusion in national-level competitions. She described her father, another national-level player, as among the “best in the world.”
Tracie’s parents, Scott and Judith Kirchner, Janesville, own Bunkers Bar and Grill, Milton, and Fast Eddie’s, Janesville. Tracie and Ryan hold owning interests and managerial positions within the family-run business.
Ryan’s parents, Mike and Kim Olson, live in Milton.
Conner, now 10, attends school within the Milton school district. Avery is 3.
Both Ryan and Tracie said the commitment and care required to support Emmy as she faced the battle of her life would not have been possible without the love and assistance given by their families and communities.
“They stepped up to help,” Ryan said.
“My mom basically raised our other two kids for a year,” Tracie added.
A hopeful prognosis
Nothing unusual was found when an X-ray was employed to explore Emmy’s posture, Tracie said. Bouts of what appeared to be constipation were treated with prune juice, but Emmy remained uncomfortable and a few months later, when she was 10 months old, she was reexamined.
No fecal matter was found in her bowels, Tracie said. Emmy was sent by ambulance to SSM Health St. Mary’s Hospital in Madison where a magnetic resonance imaging (MRI) scan was performed. It showed tumors.
They were found on her hip, near her pelvis, in her liver and lungs. They were cancerous, Tracie said.
The next ambulance ride transported the baby to American Family Children’s Hospital at UW-Madison.
That night, Tracie and Ryan said, they were told Emmy had stage 4 cancer.
Germ cell tumors are most often associated with malignancies in reproductive organs, Tracie said.
“That’s a very rare form of cancer in children. It shook us to the core,” Ryan said of the diagnosis.
Emmy was given a hopeful prognosis with a strong cure rate. “Our oncologist was confident,” Ryan added.
Several rounds of chemotherapy produced a positive result. The tumors shrunk, the lesions on Emmy’s liver decreased, as did the spots in her lungs.
“It was all amazing news,” Tracie said.
After chemo, Emmy underwent 13 hours of surgery.
Said Tracie: “When it was done, she had incisions all over her little body, but they got it all. We were extremely hopeful at that point. We went home after the surgery. She was so quick to bounce back; it took about two days.
“We were home for two weeks and then we were back in the hospital for what they called cleanup chemo. That was to make sure the cancer stayed away.”
Describing a “tumor marker” called AFP (alpha-fetoprotein), which the couple described as a secretion produced by tumors, Tracie said: “When she (Emmy) was first diagnosed, it was 119,000. After the chemo, it was down to 36. When we were back in the hospital after surgery it was back up to 700. It was going back up and there was no plan. We were in uncharted territory.”
“With this cancer, not only was it rare in children, it was rare to relapse,” Ryan said. Emmy’s doctors consulted colleagues in Boston.
A new plan, using a high-dose chemo regimen with stem cell transplantation, was formed, Ryan said.
“We went home and she was on GCSF (granulocyte colony-stimulating factor) to boost bone marrow and produce as many stem cells as possible,” Ryan said. Stem cells have the ability to “self-renew” and multiply, thus aiding in tissue repair.
The new plan began working, Tracie said. Emmy’s AFP went down to 13, which was the lowest it would ever be, she said. Nine and under is normal, she added.
As hope grew strength, Emmy relapsed. The couple was told they were out of curative options, Ryan said. A final round of chemo was offered to help slow the progression of the disease.
“We were close. After her last round of the high-dose chemo, (her AFP) jumped to 70,” Tracie said.
Emmy was diagnosed on Feb. 2, 2018. She died Feb. 1 2019.
Both Ryan and Tracie described their daughter as “sassy.”
“We have videos of her singing and saying she loved us,” Tracie said.
Emmy spent her last few months, with aid from Agrace Hospice and Palliative Care nurses, at home. Her last two days were spent at Agrace Hospice Care in Janesville, Ryan said.
Describing the heartbreak, Tracie said: “Afterwards, we had to go on. Our kids saved our lives. We didn’t have a choice but to be good for them. Emmy would have wanted that.”
When the family learned Emmy was terminal, Tracie said: “We were desperate for memories. We wanted something good to remember because her life was hospitals and blood draws and sadness.”
The couple reached out to a national wish foundation, but learned that Emmy was too young to be granted a wish. The foundation served children who were at least 2 1/2 years old, Ryan said.
Looking for alternatives, a family member created a GoFundMe page. It raised $10,000 and attracted donors from all over the world. The Kalahari Resort in the Wisconsin Dells also contacted the family offering the use of a five-bedroom house for a week, Ryan said.
In January, some 20 family members arrived in the Dells to make memories with Emmy, Tracie said.
She was sick, the couple remembered, but she enjoyed her SpaghettiOs. “She got to go swimming, she was happy again,” Ryan said.
That night, as the Olson family made happy memories, the idea for Emmy’s Wish was born, and while Emmy spent her final hours at Agrace, friends of the family were filing the paperwork to become a 501c3, Ryan said.
“We would have done this even if Emmy had survived. We were meant to help people,” Tracie said.
Through contacts made within the medical community, the couple has already learned of several families in need, Ryan said.
Said Tracie: “For those who qualify, we organize the wish. It begins with me talking to the applicant and making contact with their doctor to better understand the situation.
“The most popular wish is to take families to Disney World. We are currently becoming partners with Give The Kids The World (Village). It’s the resort area where the wish kids go.”
On average, Ryan said, it costs $7,000 to send a family to Disney World for a week.
Several fundraising initiatives are underway, the couple said.
Family members continue to support the effort: Tracie’s cousin, Nikki Myszewski sells one dozen eggs for $3. “We get $1 of each sale,” Ryan said. The eggs can be purchased at Earthsong Books and Gifts, Janesville, on Fridays, or contact Emmy’s Wish online. There is also a line of T-shirts, Ryan said.
Emmy’s Wish is planning a fundraising event to be held at Bunkers Bar and Grill, 229 North Janesville Street. The event will begin Sept. 7, at 11 a.m. and run until 1 a.m. Sept. 8.
There will be music, a cash bar and a bags tournament. The bag boards will become raffle prizes at the end of the event, Ryan said. A 50/50 raffle is also planned.
“Our goal is to make enough money to send one family to Disney,” Ryan added.
To make a donation, learn more about Emmy’s Wish and about fundraising efforts or to apply for a wish, visit: https://emmyswishinc.com.