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Luke G - Journal

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Posted 2018-05-17T20:00:52Z

A bit overdue...

Friday morning, Luke and I flew to Denver for the Summer’s Way Rhabdomyosarcoma Workshop. The Summer’s Way Foundation invited doctors and researchers from around the world to attend -- to brainstorm, to collaborate, to present research, and to interact with each other and with parents and other advocates. Without a foundation, which was started by parents who lost their daughter to rhabdo, there wouldn’t have been a rhabdo conference. Yes, there’s more collaboration than there used to be in the childhood cancer world, but this event was pretty unique and pretty exciting. Even though much of the science was over our heads, it was still very interesting.There’s still not a lot of hope in the stage 4 ARMS world, but it’s helpful to know that there are doctors and researchers who care. They lose sleep; they stress eat; they do want to find answers.[...]

Posted 2018-04-30T03:32:30Z

Doing well...

Wow, it’s been a while!

Luke felt the best he's felt after any of the maintenance infusions after running to chemo on the 12th, so he figured he should run to chemo again the next week (and maybe every time). He even padded an extra half mile on for good measure for a total of 6 miles. Sadly, it didn’t really work. He ended up feeling not so hot last weekend. Plus, a toe had started bugging him during the run and it hurt to even walk around at clinic. We went to the foot doctor the next morning. The tumor in Luke’s left foot caused his 2nd through 4th toes to curl downward at the top knuckle. The 2nd toe was most affected, and the toenail had died and come loose from hitting the bottom of his shoe as he ran. The doctor ended up removing it (the nail, not the toe). The timing worked out well, since his ANC was the highest it’s been without help from Neupogen since before starting treatment. The toe recovery put a dent in his running last week, but he’s back in action now.[...]

Posted 2018-04-14T15:28:10Z

Just keep running...

Luke ran 5.5 miles from school to his chemo appointment on Thursday and 3.7 miles home from school Wednesday. His times are dropping fast! I put running clothes on a couple of times this week. That counts for something, right? I'm amazed by him and inspired by him, but I'm just so dang lazy lately. [...]

Posted 2018-04-11T15:51:00Z

Wish Trip...

Luke reminded me last night to post here for those not on facebook. (Hi Shirley!)

I got word from our wish granter on Friday morning that Luke's trip to Santorini has been booked for June! I'm so grateful to Make A Wish (and to all who support them) for doing this for our boy and for our family. It's still pretty surreal that our child qualifies for a wish. [...]

Posted 2018-04-03T02:40:21Z

Day 590...

Luke is doing pretty well.
I'm feeling thankful for Easter and the promise that it brings.

I’m a little sad that Luke's spring break wasn’t more exciting, but he doesn’t seem to mind. Kate and I were able to get away to see some schools while Paul and Luke stayed home. Luke had some fun with friends and relatives while Paul was at work Monday through Wednesday.[...]

Posted 2018-03-23T23:46:00Z

Doing well...

Luke’s doing pretty well. He’s up to 111 pounds -- almost an all time high! He was 113 (but a few inches shorter) at his checkup in the spring of 2016. He ran 4.5 miles a couple of times this week. He had his 2nd infusion of his 3rd month of maintenance chemo yesterday.[...]

Posted 2018-03-13T02:43:12Z

Day 569...

Luke's CT was clear too! We're so thankful that he is still NED -- I guess maybe actually NED now, not just ADNED. The fear is always present, but I'll be trying to keep it on the way back burner at least until the next set of scans approach in 3 months. A fellow rhabdo mom shared a picture of her Faith over Fear shirt today before her son's scans tomorrow. Easier said than done but what a great motto/mantra.[...]