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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.

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Day 415...

After a beautiful weekend and a nice 3 week break from chemo, it was back to business yesterday. Luke’s on week 47 on the protocol, which calls for one dose of vincristine on Monday and 5 doses of irinotecan (Monday-Friday). Luke had these drugs during weeks 1, 4, 20 and 23, and he'll also have them during week 50. Week 23 was back in February during radiation. Before we went to clinic yesterday, Luke made homemade applesauce from farmers market apples. Good thing, since it ended up being the only thing he ate after chemo. He had a weird reaction during one of his pre-chemo anti-nausea drug infusions, so they stopped the infusion quickly and didn't allow him to have that drug. It’s a pretty effective drug, so that’s a bit of a bummer. He really wasn’t feeling great last night, but he was remarkably chipper anyway.

Paul, Luke and I went down to watch the Chicago Marathon from Charity Row (mile 14) on Sunday, mainly to support the Cal's Angels marathon team and the runner who had been paired with Luke. It's a neat program where the runners are each paired with a Cal's kid for mutual support and inspiration. We met our runner Julie and her family over the winter and have been contact with her since then. It was our first time at the marathon, and we had a great time cheering on runners, meeting other Cal's kids and their families, meeting some Cal’s staff and volunteers, hanging out with Julie’s family during the race and with Julie herself at the after party, It was a pretty special moment when she spotted Luke after she ran by and then backtracked for a giant hug. Somehow, Luke and I came away from the event with plans to run the Fox Valley Half Marathon with the Cal's team next September. I have a hard time looking that far ahead, but it’s quite a goal, and I’m looking forward to running the race with (or more likely way behind) Luke!

Luke was definitely feeling inspired after the marathon. Yesterday morning, he announced that he was going to run to his 1 pm chemo appointment at the hospital - 3.3 miles according to google. I wasn’t sure if it was the best parenting decision to allow him to do that, but it seemed like it’d be fine as long as he had his phone. He did it at a recent personal best pace and felt so great about it. “It was so much fun running here today. I’m so happy I did it.” Pretty impressive to say the least!

I didn’t wake him up for school this morning, and he was glad I let him sleep in. He was thinking he’d go to at least one class this morning before the home nurse came at 11, but decided to wait and just go to his last class of the day after chemo. He clearly wasn’t feeling great in the car on the way to school, so I reminded him that there’s no pressure to go from anyone other than himself. He said, “I want to go, and I think about how amazing Mike was. He went to school on chemo days.”

He has eaten a little better today so far -- applesauce, oatmeal (with banana, coconut and dark chocolate), brown, red, and black rice sauteed with broccoli, green beans, carrot, corn, kale and egg (all from Saturday’s farmers market) and some outstanding butternut squash soup (made by the boys in the picture).

Here’s a link to an article about the Go Gold campaign at GBS. There are some big errors, but I’ve been told they’ll be corrected. Feel free to use my email and password to log in if you’d like to read it and aren’t a subscriber. amanda.gregory@hotmail.com J7i2D3QE

Thank you all again for everything!

Amanda

#lukestrikesback

 

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