All-Star Rayden

In July 2021, the world turned completely upside down in just three days for this little boy’s family. One minute they had been enjoying their two small sons and eagerly awaiting the arrival of their baby daughter and the next the baby was born 10 weeks early and weighing just two pounds. Her lungs collapsed and she was put on a ventilator. She would spend the next 3 months in the NICU. Two days later, two-year-old Rayden was diagnosed with Wilms Tumor. The sense of shock for Rayden’s parents, Emily and Joey, was indescribable.

“My aunt called me to say that Rayden was not feeling good,” explained Emily. “He was lethargic, and just not himself. He wasn’t playing, eating, or drinking. A jumble of different emotions flooded through my mind, but I thought that maybe he had a stomach bug. Cancer was the last thing on my mind.” They examined him and noticed that his belly was firm so he needed an ultrasound.

“I had just been discharged from the hospital myself when I got a call to say that they had found a mass. They were sending him to the University of Iowa Hospital. When we got to the hospital, we saw what floor we were on; it was the one for cancer and blood disorders. Rayden was admitted right away,” Emily said. Meanwhile, his little brother went to stay with his grandparents.

The next morning, they met with the doctor who said it was Wilms Tumor, stage 3. It was going into a major blood vessel in Rayden’s stomach. Usually, they try to remove the mass during the biopsy, but because of the blood vessel, Rayden had to have chemo first to shrink the tumor.

Poor Emily was in a wheelchair, she had had to have a hysterectomy right after giving birth by C-section and had been in the hospital for five days herself. Thankfully both children were in the same hospital. “I can’t remember how I felt, not only had I just gone through two of the most traumatic things, but I was on a lot of pain meds. Everything was a blur. Amid all that chaos, I was mostly at peace and somewhat numb to what was happening,” Emily said.

Joey was a fork-lift driver at the time. He decided to quit his job to be with his family.

“Oh man,” said Emily. “As soon as he told me he quit his job, I was like why would you do that? I still had a lot at home to take care of. It felt like more weight on my shoulders. It took me a bit to realize we needed help. The social worker would check on us and, at first, I was in denial, thinking to myself, everything is fine. Then the first of the month everything was due, and I realized we needed help.”

One of first programs the family turned to was the Orange Envelope. “I felt all that weight on my shoulders lift, I could breathe again. I didn’t know that there were people out there that could help. I thought we were on our own. We have received so much help in our journey, we do have a village and people who are helping,” Emily said.

Joey was able to go back to work about a month after diagnosis. The grandparents looked after Rayden’s brother and the baby stayed in the NICU for three and a half months.

There were many moments of sheer despair. One particularly stood out. On the second day of radiation Rayden was not himself. He had already endured the biopsy, chemo, then surgery to remove the tumor and the removal of one kidney. Then he had radiation because he still had leftover cancer cells in that blood vessel.

“I could see the effects really taking a toll on him,” said Emily. “The chemo side effects were not that bad, but with radiation he had tingling of his fingertips. He now didn’t care for foods he had previously loved, they had to shave his head, and he didn’t want to eat or play. So they put in an NG tube because he was losing so much weight not eating. Those two days with the tube were some of the worst, he was begging for milk, or juice and I had to keep saying no. He was two years old; he couldn’t understand.”

Rayden’s baby sister came home the day after Rayden had his surgery in October. “The timing,” said Emily. “Could the hospital not have kept her a few more days? They had to put a feeding tube in again, now I had two kids with feeding tubes. It was craziness trying to keep up with their feedings. I tried to coordinate them, but it was impossible. They developed a bond though.

Rayden said, “She is just like me, I must protect her.” Due to hospital COVID-19 regulations, Emily was not allowed to give her newborn formula when she visited Rayden. “I couldn’t breastfeed, I had no supply. I tried and tried to feed her, but she wasn’t latching on. I was fighting with the hospital board; I had two kids fighting for their lives, but that didn’t seem to matter,” Emily exclaimed.

Even though both kids were in the same hospital, and it was only about 35 minutes away from home, Rayden had radiation for three weeks. Traveling back and forth became very difficult for the family.

“With the immense help given from the Pinky Swear Foundation with gas, and other expenses that came along the way, it felt like a giant weight was lifted off our shoulders, and we were able to focus on seeing our kids while they fought to get better,” said Emily.

Both Rayden and his little sister are happy and healthy, and Rayden is now cancer free!

“Thank you so much Pinky Swear Foundation for making our tough journey seem a little bit easier. You were a huge reason we were able to go to all our appointments and inpatient stays and even visiting his sweet baby sister,” Emily said.

This family is slowly getting back on its feet. Rayden is in pre-school in the afternoons and turned five in November of 2023. The boys are close, although they also fight like any brothers. Joey works most of the time, some weeks 60 hours, others maybe 40. Emily still hasn’t been able to get back to work. Their little girl had to be in physical therapy for two years and has finally graduated. She just learned to run. Rayden been in remission since April of 2022 and now he just goes for scans every six months.

“I have been thinking about writing a book about our journey,” said Emily. “People hear our story, and it inspires them to keep going. They tell me that these traumatic things that would have broken anyone else and yet I stayed strong,” Emily said. “I have met so many amazing, strong, warrior moms. We have a support group for kids being treated in Iowa City. It was a very isolating time because of Covid, but it’s nice to have those people to connect with. Friends and family, they knew, but I felt that they didn’t understand. Life as we knew it got flipped upside down in a couple of days and it was hard for others to comprehend.”

*Updated information as of June 2024: We unfortunately learned that Rayden has relapsed and will begin to undergo further treatment.