Benjamin’s Story – One Step At A Time

Megan Morrey Stories

Benjamin, just a year old, is the youngest of four. When he was born, his parents, Laura and Jim, had no reason to believe anything would be wrong. Laura had had a completely normal pregnancy and labor, but moments after Benjamin was born, she heard the doctor whispering something to the nurse, both looking at her newborn son with concern. Benjamin had a sizeable bump on his bottom that doctors were worried about.

“I couldn’t see what they were talking about, but I could hear them whispering,” Laura said. “I could tell by Jim’s face that he could see something definitely wasn’t right – it was a big bump. The doctor told me everything would be fine, it was probably just a benign growth, he might need surgery and then it will be over.”

After doctors used ultrasound to examine the bump, they worried it may not be benign after all, and decided to take a biopsy to test it. After a week stay in the hospital while Benjamin recovered from his biopsy, Laura and Benjamin returned to Laura’s parents’ house where the family was staying after Benjamin’s birth. A few days after returning home, the biopsy results were available. At the same time, the surgeon called Laura while the oncologist called Jim. Benjamin had infantile fibrosarcoma.

“I was holding Benjamin when the surgeon called,” Laura said. “I remember the surgeon just telling me, ‘I’m really sorry.”

Every additional piece of news seemed worse and worse:  what they thought could be a benign growth was in fact a malignant tumor. This type of cancer rarely spreads – Benjamin’s had spread to his lung. Laura and Jim were overwhelmed.

“You build yourself up to be positive, and something like this happens and you just think ‘come on,’ you know?” Laura said. “Then you just have to take it one step at a time. You can’t not go to the doctor’s appointment or not comfort your sick child, or not continue taking care of the other three. You have to just keep going.”

Doctors told Laura and Jim that Benjamin’s prognosis was good, especially since a new drug to help treat cancers like his was currently in clinical trials. This option was both exciting and scary, as it would make Benjamin one of the youngest patients with his diagnosis to ever be treated with this drug.

“It was a scary time, because we had to wait six weeks before we could do a scan to see if it was working,” Laura said. “I thought I could feel the bump getting smaller, but I didn’t want to get my hopes up.”

Laura was right: it was getting smaller. By the six week scan, the new drug completely dissolved the tumor on Benjamin’s lung, and the tumor on his bottom was reduced by 70 percent. In September, Benjamin had surgery to remove what remained of the mass in his bottom and after a biopsy, the family learned the drug had completely dissolved the tumor and all that had remained was scar tissue. He will remain on the medication for six months post-surgery.  But his fight isn’t over – he’ll go back to the doctor every few months to see if the cancer returns without the drug to keep it at bay.

Laura and Jim are still cautiously looking for any sign the cancer has returned, but they’re thankful for the path they’ve been on and are praying that they’re close to the end of Benjamin’s fight.

“We don’t want him to have to have the fear that we have, about the cancer coming back,” Laura said. “Our ultimate hope is that we can just get back to our old ‘normal,’ and that this can be a chapter that ends and doesn’t come back.”

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