PLAINFIELD – Aug. 16, 2016, started off as a normal day for the Rauen family – Amy and her husband, Joe, and their children: Noah, 5, and 3-year-old triplets Brooklyn, Joey and Nora.
Twenty-four hours later, Amy learned Brooklyn had a Wilms tumor. Although it is a rare kidney cancer, it still is the most common type of kidney cancer in children, according to the Mayo Clinic. The tumor is most common in children ages 3 and 4, and uncommon in children over the age of 5.
This is how it happened.
Amy had taken her children to the park. They like to play “airplane” – where Amy puts her feet on their stomachs so they can “fly.” Later that day, Amy noticed Brooklyn had blood in her urine. So she took Brooklyn right to the doctor.
The next day, Brooklyn had blood work and an ultrasound. Twenty minutes after the ultrasound, the doctor sent Brooklyn to Central DuPage Hospital in Winfield.
“He said, ‘There is a 14-inch mass growing out of your daughter’s kidney,’” Amy said, thankful she had played “airplane” that day. “When I put my foot on her stomach, I jarred it and caused it to bleed. Otherwise, we probably would never have known.”
Wilms tumor often has no symptoms, but if symptoms are present, blood in the urine usually is one of them. Other symptoms include abdominal swelling, a palpable abdominal mass and fever, according to the Mayo Clinic.
Hemihypertrophy may also be present at birth. Hemihypertrophy is a condition where one side of the body is noticeably larger than the other.
“We did not know this until the oncologist saw her for the first time and laid her on her back to measure her legs,” Amy said. “One leg is longer by a good inch and a half, and she should have been getting scans since birth. But she’ll be monitored for the rest of her life.”
The tumor had grown into Brooklyn’s inferior vena cava, a main vein that supplies blood from the lower half of the body to the heart, Amy said.
“They could not do surgery without severe complications, so they decided to do chemo first,” Amy said.
After nine weeks of chemotherapy, the tumor retracted out of the inferior vena cava, and Brooklyn had surgery to remove it Oct. 10. Brooklyn then had six days of proton radiation and continued with chemotherapy, for a total of 28 weeks of chemotherapy, Amy said.
“After the last treatment on Feb. 21, we go for a scan to see if anything grew back,” Amy said. “They said there’s only a 10 percent chance something will grow back, but you just never know. The next part could be the other kidney or the lungs. One of her friends just passed away with the same cancer she had.”
Amy said her neighbor’s granddaughter was diagnosed with Wilms tumor in March 2016. The cancer was stage 4 at the time of diagnosis and had already spread to the lungs, Amy added.
Amy hadn’t known the granddaughter had Wilms tumor until Brooklyn’s diagnosis; Amy had only expressed sympathy and condolences.
“I didn’t go in depth with it until it hit home,” Amy said. “Then you become ultra-aware of all types of cancer. It becomes a new reality for you.”
How is Brooklyn handling the cancer and treatments?
“Being 3, she still kind of has her innocence,” Amy said. “She’s just kind of like, ‘Oh, I have cancer in my body; I have to be careful of germs.’ She’s not really understanding of it, but she’s definitely very brave when she goes for chemo treatment. She knows when they put cream on her port to numb it and says, ‘No cream, Mommy, no cream. They give me too much medicine and it makes my tummy hurt.’”
Brooklyn’s main side effects are joint pain, Amy said, but Brooklyn’s siblings are terrific distractions.
“I have strong faith in God,” Amy said. “Whatever happens, we’ll just deal with it.”
Dec. 22 was a rough day for Brooklyn Rauen, 3, of Plainfield, who has Wilms tumor, a type of kidney cancer.
“That was the day she was the sickest she’d ever been,” Amy Rauen of Plainfield, Brooklyn’s mother, said. “Ironically, that was the day they came with all the gifts.”
In November, Monica Mainland of Naperville, refinery manager at ExxonMobil, said she and her family attended an event at the Rialto Square Theatre in Joliet and bought a ticket to a raffle for a collection of toys.
To Mainland’s surprise, they won. So Mainland discussed it with her children – ages 9, 7 and 4 – and they decided to donate the toys to a couple families in need.
“I reached out to Trisha Simpson, public affairs manager for ExxonMobil, and she put me in touch with Missey Schumacher [Channahon village president],” Mainland said. “She was able to match up the toys with some families that would really benefit from them.”
The Rauen family was one of those families. Local organizations Team Make a Difference and Shorewood HUGS helped coordinate the donations.
“We were just so honored they thought of us,” Rauen said. “So many families could have used it.”
Mainland said she and her children were happy to do it.
“If the donation brought them some joy and excitement,” Mainland said, “then our objective was met.”