The long-term financial impacts of childhood cancer

The long-term effects of childhood cancer affect every aspect of life, including finances. 

We sat down with All-Star John's mom, Alice, and discussed how hard it is even after treatment is done. 

When John was diagnosed with a Germinoma Brain Tumor in 2021, his mom, Alice, stopped working. She wasn't eligible for FMLA and was forced to take leave without pay to attend appointments and be there for John.

"Then I was fired for taking too much leave. Unfortunately, my husband, an independent contractor, couldn’t work either during the time because of a failed disc in his back,” she explained. 

They were struggling to make ends meet. 

This is the reality of a childhood cancer diagnosis. Parents have to decide between spending time caring for them or trying to work to make ends meet. It's an impossible choice. 

Luckily, there are organizations to help during times like these, like Pinky Swear Foundation.

“We found out about Pinky Swear towards the end of John’s treatment,” Alice went on to say. “We received an Orange Envelope, which included a gift card and a note from another child, it was great.”

Pinky Swear then paid the family’s mortgage.

“At the time, I was unemployed, and neither of us had any medical leave, so we had no income at all. To have this support was incredible and kept us afloat at a really challenging time,” said Alice.

John’s treatment ended later that year. The family’s life could go back to normal, right? Except it couldn’t and didn’t.

Five years later, there are still financial burdens from John's cancer.

“I still have unpaid bills,” explained Alice. “It’s a psychological hurdle to actually go through them all. It’s so frustrating because he doesn’t have cancer anymore and you are trying to live your lives and budget, and yet you’ve got these great big medical bills hanging over you that you didn’t ask for or deserve.”

Alice told us about meeting the mom of a classmate of John’s who had also faced childhood cancer. When they met, there was a huge stack of papers on her desk, and she explained that they were medical bills she still had to go through.

“Instantly we knew without saying a word what emotions and feelings are evoked when you look at that pile. It’s so visceral,” Alice said.

Like many parents who must take time off to care for their child, Alice lost her job. So, when John’s treatment ended, she could not go straight back to work. Finding another job took a while, and so did resuming an income.

Insurance only covers so much.

John will be on their insurance for 10 years after his diagnosis at sixteen years old. He has multiple tests and sees many different specialists each year, including neurology, audiology, endocrinology, and ophthalmology, all as a result of his diagnosis and the effects of his treatment.

The financial implications add up and will continue to do so for the rest of John's life as he continues to need specialist care and follow-ups. Each year the deductible resets and the bills come in. 

Those medical bills will take years to pay, and John will start his adult life with an additional financial burden that most others his age do not have.

“It’s always hanging over you like the Sword of Damocles,” said Alice.

John’s family will never forget the support they received from Pinky Swear Foundation.

“I didn’t even know what to ask for; you took the burden off of me. The support means so much, and John received that card of loving support from someone he didn’t even know. John still has it even after six years,” Alice said. “Supporting Pinky Swear matters because you supported me in my lowest time and when I needed somebody the most. I will never forget, and I want to do my part to give back.”

Alice vulnerably spoke about the physical and emotional struggles of life "after cancer" in two other blog posts. We encourage you to check them out!