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Luke G - Journal

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Posted 2021-10-21T15:56:43Z

Half marathon…

Hi, it’s Luke.
Thank you to everyone who has donated to my half marathon fundraiser for Children’s Cancer Therapy Development Institute. You’ve nearly doubled my original goal, and I so appreciate every dollar. 
My race was on Sunday, and it went better than I anticipated despite running 16 miles instead of 13.1. I completed the half marathon in 1:26:41 according to my watch (6:37 average mile), also I was the unofficial overall winner out of a field of 350.
When I reached the second of two out and back turnaround points, there was a sign saying, “half marathon turnaround ahead,” but the turnaround point was right there. So, another competitor, Stu, and I ended up running 1.5 miles past the turnaround point on the marathon course for a total of 3 miles extra. We didn't turn back until a biker caught us and told us we missed the turnaround point. I paced with Stu starting at mile 2 until the end. I didn’t think I was capable of this, and I certainly wouldn’t have done it without the solid pacing of Stu.
Throughout the race, and particularly when I was struggling or in pain, I thought of how much more pain cancer patients endure. I also thought of how grateful I am to be able to run, in addition to being alive to enjoy the beautiful weather and forest. 
I thought about Megan Bugg, who is as determined as ever on her sixth relapse and has raised $500,000 and counting for rhabdomyosarcoma research, along with being a powerful voice for pediatric cancer awareness. Megan had surgery today to fix a CSF leak, so please keep her in your thoughts and prayers. 
I also thought about those like Mike who did everything in their power to stay alive but to no avail.
As you all know, I am the exception, not the norm, in terms of my alveolar rhabdomyosarcoma outcome so far. With your help, CC-TDI can ensure that long-term survivorship will be the norm, not the exception.[...]

Posted 2021-09-01T17:36:00Z

5 years!

It’s been just over 5 years since Luke was diagnosed with stage 4 alveolar rhabdomyosarcoma. August 2016 was quite a month: August 2 ultrasound of left foot, 5th MRI, 6th the probable sarcoma phone call at North Avenue beach, 9th appt with surgeon, 10th surgical biopsy during which we learned it was definitely a cancer in the small round blue cell family, 17th port insertion and bone marrow biopsy, 18th PET scan, 19th found out it was in his spine, his other leg and his bone marrow but still didn't know which cancer, 19th 8 pm surgeon called to say that the molecular pathology confirmed alveolar rhabdomyosarcoma, PAX3-FOXO1 positive, 22nd first chemo instead of first day of 8th grade, 25th Penny dog’s first visit to the hospital, 31st “Mommy, I might be imagining this but come here and feel my foot. It feels like my tumor has gotten smaller and softer." September 1 first unplanned hospital admission to manage chemo side effects. [...]

Posted 2021-06-07T15:04:33Z


So many emotions that I can't seem to put into words. When Luke walked across the stage for his 8th grade graduation, the odds were strongly against him making it to this big milestone. Thinking about too many kids who have missed out on too many milestones and sending love to their families. 
Apparently graduation day was also National Cancer Survivors Day, and we are so very grateful that this remarkable boy is surviving and thriving. 

Posted 2021-03-25T01:36:13Z

Scan day...

Scan day - Instead of the picture of the MRI machine or the danger strong magnet door, we have the picture of Luke driving off to his MRI by himself. Mom's not allowed since he's 18, and there's a pandemic. CT is Friday morning. After the CT, Luke, Grandma and I will hit the road for him to see St. Olaf College in person for the first time. Sure hope he likes it! [...]

Posted 2021-01-03T02:18:08Z

Iffy but ok...

Happy 2021! Luke's scan results were more iffy than I'd like, but probably ok. 

There's an area of concern on a toe on his left foot - they think it's possibly an infection or inflammation related to a fracture. Extra eyes are looking at the images, and they did some extra bloodwork to look for infection and inflammation markers. His left foot MRI images are always complicated because they "radiated the heck out of it" (quote from a doctor) and because of all of the miles he puts on. No one seems to think it might be cancer, but I'm unsettled. [...]

Posted 2020-12-28T21:08:44Z

Scan day is here again...

Luke had his CT and MRI this morning and his echocardiogram last week. It's been 3 months today since his last scans, 3 months since my last post here, and also 3 months today since my sister Kristen was taken by ambulance to the hospital where she passed away the next morning. Kristen adored Luke and was one of his biggest champions. My relationship with her was complicated, but I miss her and I think I've been finding it hard to write updates about Luke that she isn't here to read.[...]

Posted 2020-09-28T13:47:21Z

Scan day...

It's scan day. Luke is in the MRI now and will have his CT right after. 🙏🏻🎗

He ran 41 miles last week, up from his usual 30. The orthopedic surgeon who has treated his stress fractures has encouraged him to limit his miles and mix in some biking - maybe he'll get back to that this week. He has had pain in his good foot the last couple of weeks. Things like that always strike fear in my heart, but it seems pretty clear that it's tendonitis. Fortunately, it doesn't bother him much while he's running.[...]

Posted 2020-09-12T20:57:00Z

Running strong...

I experienced my first runner's high yesterday, and I didn't even run! It came from watching my little guy look stronger than ever out on the cross country course and beating his previous best 3-mile time by a minute and 47 seconds. It was also his first race as a team captain. He brought the captain news home from practice on Thursday night, and yes, I cried. His first race of the season was last Saturday at Evanston. I stood outside the fence and cried for the whole race - his last first race of his high school career. The bright side of the covid spectator rules is that no one was around to notice. His first race ever was 3 years ago today. I'm so grateful that his sport gets to happen this fall but of course infinitely more grateful that he's here to participate. At diagnosis, he had a 10.5x2.5x2.5 cm tumor in the bottom of his left foot. The beast was also in a bunch of bones in that foot, in his spine, and in his other leg. He was using a knee scooter to get around. He has come so far, and we are so incredibly fortunate, lucky, blessed.[...]