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Luke Strikes Back

Luke was diagnosed with stage 4 alveolar rhabdomyosarcoma on August 19, 2016. He started treatment on August 22. We appreciate all of your support.

Latest journal entry

Posted 2019-10-08T14:16:56Z

Happy and Strong...

Luke’s chemo side effects have been worst 2 days after chemo lately, but he was hoping to feel well enough during his cross country meet last Wednesday to set a new personal record. After deciding at the starting line that he didn’t feel well enough to race, he was really hoping to have a good race on Saturday. He looked great when we saw him passing by on the course. I saw the clock when he crossed the finish line and knew that he had beaten his previous best time. When I caught up with him after the race, he told me he was feeling happy and strong -- words that made my heart warm and my eyes wet.

He thought about running home from chemo yesterday but decided to run after we got home instead. He thought it made sense to be closer to home in case he wasn’t feeling well. It’s helpful when he’s logical like that! I often find myself trying to talk him out of these kinds of things (usually unsuccessfully). This is the first time he’s done a post-chemo run, and he said it went pretty well.

Thank you to those who have already agreed to join our Cycle for Survival team! I know it’s hard to know in October whether you’re available to ride on Feb 9. For those that are considering it, please know that it’s ok if it turns out that you can’t make it to the event. Paul took someone’s place on a bike (fairly last minute) in 2017. If you are able to be there in person (on a bike or not), I know that you will find it to be inspiring, empowering and fun. To join our team, click here. The password to join is luke. 

Thank you to Jennifer and David Linn for starting the movement that has raised over 220 million dollars for rare cancer research. Jenn, you deserved so much more. NU friends, David played soccer for the Cats. This video shows a little more about Jenn, David and Cycle. 

October 1 was the first annual Rare Cancer Day. Here's a little info: In 2019, roughly 1.7 million people will be diagnosed with cancer in the United States. About 50 percent of people with cancer have a rare cancer. Rare cancers include brain, pancreatic, ovarian, stomach, all types of pediatric cancers, and many others. Even though they account for about half of all cancer diagnoses when combined, research on many rare cancers is drastically underfunded, often leaving patients with limited or no treatment options.

“With common cancers, there is more data, along with collective experience, to develop guidelines for treating these diseases,” says Dr. David Pfister of Memorial Sloan-Kettering Cancer Center. “The more you see something, the more experienced you get at dealing with it. We know if one drug works better than another and are able to understand the course of the disease.” With orphan cancers, most physicians and patients have no blueprint. “In terms of treatment, there aren’t many patients going through what I am,” Cycle founder Jennifer Linn said. “And with such a small pool, there isn’t much incentive for drug companies to invest in research.”

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