All-Star Nate

In February 2020, 12-year-old Nate developed a baseball sized lump on his neck. The doctor said it was due to an infection. A few days after they removed the lump, Nate’s mom, Sonja, received a call that she will never forget.

“I have bad news, it’s neuroblastoma," the ENT doctor said.

The doctor stated that this was not the kind of cancer you want and that he was sorry. Then he hung up.

“I fell apart, I laid on the floor and grabbed my Bible and started bawling. I didn’t know how to tell Nate or my husband. I had no understanding of what was going on. All I could think was that Nate is at school having a normal day and has no clue that he has cancer, and it’s a bad kind!”

In a heartbeat the lives of this close-knit and loving family were changed forever.

“We ended up telling both Nate and his sister while sitting on the couch. Everyone just cried," Sonja said. "Our pastor came over and we prayed for Nate. After that, Nate quickly stopped crying and said, "I’m going to be alright.”"

It took a few weeks to get in to see the oncologist, but eventually the doctor explained the situation. However, they still didn’t know how far the cancer had progressed. So now they would wait for scheduled tests and the results of those tests. It was frustrating, and the waiting was very hard for Nate’s family. During this time Nate kept going to school and his parents carried on working like everything was normal. The family prayed a lot and Nate heard from God “You are going to be alright,” which gave him a feeling of peace.

The family was told that Nate would either need surgery or chemotherapy, it was their choice. “I thought, I just want it out,” said Sonja. The tumor had gone all the way from his neck to his carotid artery behind his eye. The family chose surgery and after the tumor was removed, the doctors believed that they had gotten it all and that he didn’t need chemo. After news like that, the whole family was on cloud nine.

However, the 6-month scan, would indicate differently. On it were some suspicious cells, but the doctor wasn’t particularly concerned about them. Sonja decided to get a second opinion at the Mayo Clinic. On her way there Sonja got a dreaded call that the scans had been read incorrectly and that cancer was back in Nate’s skull and his neck.

“We got a complicated road map with terms we didn’t understand," Sonja said. "Again, we fell apart.”

It was determined that chemotherapy was the next best step and they transitioned Nate's care to Mayo Clinic. Nate was scheduled to have five rounds of chemo and each treatment meant a full week spent at the hospital. Nate and Sonja eventually ended up temporarily living near Mayo for four to six months during treatment which meant time away from Nate's dad and sister and Sonja's job.

“I had to take some unpaid time off because I had to do so much for Nate like give him shots. We of course hadn’t budgeted for all the trips and food. Nate didn’t like hospital food and started losing weight, I had to buy food so that he at least ate something," Sonja said. “I would load the van for several months and just figure it out. Jeremy, Nate's dad stayed home with Nate’s sister, but traveled up each weekend to take over at the hospital which allowed us girls have some precious time together. We would go to The Mall of America and that’s where we saw Pinky Swear.”

Sonja remembers having an "oh my goodness" moment right there in the mall after finding out that Pinky Swear Foundation existed. They applied for an Orange Envelope and quickly received a gift card in the mail.

“The love and kindness shown by the people at Pinky Swear just warmed my heart when I had been so isolated. I was at the lowest point of my life," Sonja said. “When we got the Orange Envelope it felt good to know that Nate's specific food needs were taken care of."

Nate also went through 2 stem cell transplants, proton therapy and radiation at Mayo. He did get to spend some time at home before radiation, but once it came time for that, the family was back in same routine as when Nate had chemo in Rochester. They became worried about costs. The expense of travel was weighing on them, yet they didn't have a choice. They did what was necessary.

Pinky Swear Foundation was there to support again.

“Pinky Swear paid our mortgage not once, but twice. I hadn’t been able to work for a long time, so it was a huge relief. It was the difference between whether we would make it one month or not," Sonja said. "My employer has been very supportive, but even so, taking unpaid leave is very difficult. I am the main breadwinner."

Nate was finally able to go home, but the road was met with even more challenges. Once home, Nate needed a nurse 24/7 in the room to monitor him. His lungs filled up with fluid all the time and his body was filled with so much nerve pain that he couldn’t walk.

"It was so awful. He went from being mobile to being in a wheelchair and his dad had to carry him up the stairs to get to his room," Sonja said.

Nate is now back in school and participating in a trial out of Kansas City to prevent the cancer from coming back. Nate and Sonja travel to Kansas City every three weeks for tests, but the treatment can be done at home. The pills he takes cause digestive issues and make him weak and tired. Nate is much older than other patients in the trial and so he takes 15 pills, twice a day. According to his parents the doctors are really just guessing.

“It’s rare that a teenager gets this diagnosis and usually people don’t make it," Sonja said. "The doctor in Kansas City said that if it comes back, Nate will die. That is weird that it is the kind of normal conversation we are having.”

For so many, this is the reality. And Pinky Swear is there where we can be.

Nate is happiest playing his guitar and video games and had clear scans in January of 2024. He will have another one six months after that.