While our son faces cancer, this is how all of you have helped

To: Our community

From: Carly & Bobby Bartle (As told to Lauren Brill)

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To our community, 

These past two years have not been easy, but we have learned that no matter what challenge you face, a positive attitude always helps. 

However, it isn’t always easy. 

In the summer of 2019, we had five children under five: two daughters, our son, Ford, and twin boys. 

Ford was your typical little boy. At just two years old, he was full of energy and very rambunctious. We signed him up for a soccer class. When our two older girls took the same class at the same age, they followed instructions well and did what they were asked. Ford was a different story. The coaches would tell him to dribble the ball from one side to the next or run to the cones. In response, he would flop down, lay in the grass, and start rolling around and laughing, or he’d sprint off to the playground. It was hilarious and genuinely captured Ford’s spirit. 

But in August of that summer, we noticed a change in him. 

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We went on vacation, and he seemed off. He was getting these fevers, and he was no longer his energetic self. At first, we attributed the change to the fact that he was on a trip with many people, as we figured he must have picked up a bug. Then, on the ride home, we noticed while our other kids were sleeping, he was awake and looked uncomfortable.

Once we got back from the trip, the fevers continued on and off for a week. At first, the pediatrician thought it may be constipation, but after no improvement, we took him to the emergency room at UPMC Children’s Hospital in Pittsburgh on a Sunday evening. After running some blood work, they, too, noticed something was off and asked us to stay overnight for more testing. By the following Friday night, after a fretful week of tests and scans, doctors diagnosed our 2.5-year-old son with neuroblastoma, a rare form of childhood cancer commonly found in the adrenal glands. 

As a parent, it was absolutely crushing. But we didn’t have time to be sad. We needed a plan, fast. 

As a parent, it was absolutely crushing. But we didn’t have time to be sad. We needed a plan, fast.

We had 48 hours to decide whether to stay in Pittsburgh for treatments or go to Memorial Sloan Kettering in New York City, where they had specialists in neuroblastoma. Ford’s aunt, who lives in New York City, facilitated an introduction to one of the renowned surgeons at Memorial Sloan Kettering, who provided insight into the treatment plans. We knew if we went to New York, we would have to be there for a period of time, and we had four other young children. So, we also had to decide if we would bring them with us to live in New York or have someone stay with them while we were away. Immediately, all of you stepped in to help.

We chose to go to New York, as Memorial Sloan Kettering would provide Ford with the best treatment in the world. Our babysitter, who is now like a surrogate grandmother, ended up staying behind with our other children. As we figured out a treatment plan for Ford, all of you, our family in New Castle, Ford’s grandparents in Philadelphia, our neighbors, and our babysitter worked around the clock to coordinate taking care of the rest of our kids. You set up meal trains, bringing food to our house. You took our children to their dance classes, along with other activities. You allowed us to focus on Ford. 

Meanwhile, when we got in touch with Memorial Sloan-Kettering, they told us to come right away. So we hopped on a plane. They met with us, and on September 5th, 2019, Ford began chemotherapy. Throughout the last two-and-half years, Ford has endured five rounds of chemotherapy, surgery to remove the tumor, numerous rounds of radiation,  and numerous cycles of 3F8 and 8H9 antibody treatments. We’re so fortunate to have caring doctors and nurses in New York City and Pittsburgh who have come to mean a great deal to our family. 

And Ford, who we now call Ford Tough, understands that he is in a battle. 

When we pray with him, we will ask him, “Why are we going to the doctors?” 

He will respond, “To get the cancer out of my body.”

He might not know the term neuroblastoma, but he knows the term cancer, and he knows he wants to beat it.

When we ask Ford why he is so special, he says, “Because I am Ford Tough.”

And that is undoubtedly true. 

Every time he goes into the scans, it feels like you’re in some NASA control center with all the different people in white coats walking around these white rooms with bright lights. We are scared. But whether it’s a scan, surgery, or getting a port placed, Ford always does what he is supposed to do. He may want to hold on to us a little bit tighter, but he never kicks and screams. He truly is such a brave guy. 

Even more impressive, he still is a kid who is always smiling. Toy stores (specifically the toy section at Target) make him happy, and he also loves ordering pink drinks from Starbucks. 

We love seeing Ford smile, and we know you do as well, as you have done all you can to bring more joy and support to his life and our lives. 

Ford’s uncle organized a golf outing, and our school district ran a fundraiser at a high school football game. The student section wore yellow in support of pediatric cancer and made signs for Ford. School districts around us also held bake sales and other fundraisers. Our neighborhood organized a big garage sale, and all the proceeds went to us. The company I work for, Aires, held a Ford Day where they raised money, and everybody wore a t-shirt with a dinosaur and Ford’s name on it. On Ford’s third and fourth birthdays, the police and fire departments held a parade for him. We also had a Ford Tough Festival, where we raised money for neuroblastoma research and country music singer Steve Moakler performed.

We’ve got a basement full of toys sent to Ford, some from strangers. People constantly send him gift cards for his Starbucks drinks. A friend of my wife’s friend who lived in New York City found out about our story. We never met, yet she came to the hospital to bring Ford books, cupcakes, and balloons. Even Ford Motor Company sent him gifts on multiple occasions. 

At four years old, Ford definitely feels all the love. Our whole family feels it and appreciates it. 

Ford is still a happy kid.

In February, after about a year of clear scans, Ford relapsed. However, we treated the site, and it seemed to be resolved. But two weeks ago, an MRI showed three small abnormalities in brain tissue not consistent with what they would typically see as cancer. So, in a few weeks, we will rescan to get more answers. In the meantime, we are hoping for a miracle. We are hoping those spots go away.

As parents, we are living a nightmare, but I want you to know all of you help so very much. It could simply be writing us a positive note or sending a $5 Starbucks gift card. It is not the money or the gift that is so significant, but the fact that all of you take the time to let us know you care.  

And on our worst of days, it is your care and your kindness that keep us strong. Actually, it keeps us tough, Ford Tough. 

Thank you. 

Please continue to pray for our son. 

With tremendous gratitude, 

Carly & Bobby Bartle (Ford Tough’s Mom & Dad)

Check our Ford’s GoFundMe, Facebook and Instagram!

Message from The Unsealed: We are going to donate 25 cents to Ford Tough’s GoFundMe account for every new follower on our Instagram @the.unsealed account through 11/12 with a cap of $500. Right now, we are at 2,404 followers.

Carly & Bobby Bartle
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