All-Star Lydia

Lydia’s first year of life was full of getting to know her mom and dad, loving Sesame Street, the joy of swinging, and discovering her feet under her. Lydia’s parents, Mikayla and Trenton, had settled into their little life as a family of three, too, loving their time together and Lydia’s grandparents, who lived nearby.

Lydia toddled into her 1-year check-up just one day after her first birthday, seemingly in perfect health. Soon, they would learn this wasn’t the case.

During the exam, the doctor felt a mass on her right side. At first, he thought maybe it was caused by constipation, but he wanted to investigate further, so he ordered an ultrasound.

When the results came in, Mikayla received the news before the doctor came: Lydia had Wilms Tumor. She hadn’t heard of Wilms Tumor, so as she was waiting for the doctor, she looked it up online.

“I started down a rabbit hole of what it was and learned it is a type of pediatric kidney cancer,” Mikayla said.

When the doctor came in, she tried to be reassuring, but even the mention of survival rates was a conversation Lydia’s parents could never have imagined having before that day.

“It was overwhelming to hear about survival rates because you don’t think about that when you think about constipation, which was what we were thinking it was just an hour before,” Mikayla said. Lydia and her family were sent to the children’s hospital two hours away for a CT scan confirming the diagnosis.

Doctors then placed a port into Lydia’s chest where they would administer chemotherapy. Lydia underwent 19 weeks of chemotherapy, which drained the beautiful, energetic spunk from the 1-year-old.

As the family navigated their worries and new life routines, Mikayla and Trenton described themselves as fortunate. Trenton’s employer is family-oriented and provides paid time off each week to travel to Lydia’s chemotherapy appointments.

Mikayla’s co-workers donate their time off to help her take those weekly trips, and Lydia has five grandmothers who take turns watching her during the week, so she doesn’t have to risk additional infection from other children in daycare.

Despite feeling fortunate for the time allowed to be alongside Lydia during treatment, finances were tough.

“You do not fully understand the financial burden until you get into active treatment. Fuel is not cheap, and you are having to drive an extra 250 miles a week that you didn’t drive before, while having to eat meals on the road,” Mikayla said. “And we had to purchase things to make Lydia’s experience more comfortable for long travel and clothing that was accommodating for her treatments. You don’t think about those types of purchases until you’re thrown into it.”

The financial burden of childhood cancer is too much for families.

“Trenton and I do well enough to provide for our family and pay our bills and live our definition of a great lifestyle, but not well enough to travel four hours every week and to have massive medical bills. So, taking all that on at once was very scary,” Mikayla said.

Mikayla and Trenton learned about organizations, including Pinky Swear Foundation, that could help relieve some of the financial stress.

“The financial burden was really scary in the beginning, and it still is right now, but we have a lot more support and knowledge of where we can get support if things get more stressful for us,” Mikayla said.

A few months after her diagnosis, Lydia’s parents received an Orange Envelope from Pinky Swear. The Orange Envelope Program provides timely assistance, including a $200 gift card and letters of encouragement.

“We have received lots of cards from the community and other organizations, but Pinky Swear’s felt different in that it was personalized to Lydia,” Mikayla said. “It was nice to see cards that weren’t printed but were handmade by other children. We let Lydia see the cards, and they were something she could relate to.”

The family used the Orange Envelope gift card for gas to get to appointments.

“It’s a sigh of relief and another day we don’t have to worry about putting gas in our vehicle,” Mikayla said.

Several weeks of treatment showed that Lydia’s tumors had shrunk about 35%. The goal is to save as much of Lydia’s kidney as possible in the process of getting rid of the cancer. Mikayla and Trenton said it’s difficult for others to understand all the hardship that comes from a childhood cancer diagnosis. Oftentimes, parents put up a strong front while covering up their pain inside, Mikayla said.

“We just don’t choose to share those things because it’s not fair to Lydia,” she said.

Mikayla said words cannot express the gratitude families feel when they receive help from Pinky Swear and the donors who help support the program and its mission.

“It really does matter, and the impact is greater than you know,” she said.