An unexpected highlight of our trip was in the village of Halki, Naxos at the Fish and Olive gallery. We stopped in Halki to explore and have lunch and left with some gifts from a new friend.[...]
Luke G - Journal
Read Entries & Updates
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.[...]
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.[...]
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. [...]
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. [...]
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.[...]
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.[...]
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.[...]
Welcome to the Luke G support family! This site is for family and friends, old and new, to organize our efforts to support this extraordinary person. This page will serve as your home base for rallying the troops, receiving updates to support Luke G. Here's the plan:
Your First Step: Please take 30 seconds to click on the "Follow" button on the top right of this page. This will allow you to receive updates, read journal entries, make donations, share Luke G’s story on social media, and help the family with week-to-week calendaring needs. Though not mandatory to follow Luke G’s page, we encourage you to easily create an account with your name and email in order to be able to post photos, leave comments and sign up as a helping hand on the Calendar page. Feel free to upload a photo of yourself to your profile so we can get to know and recognize others on Luke G’s support team. After clicking “Follow” above, read on to learn more about what you can do to help.
Journal: This tab is where you can read the latest entries posted for Luke G and our support team. You may see additional authors writing updates here to help alleviate pressure for Luke G and expedite information sharing. Each post is followed by a photo and name of the author of the entry. You can reply with supportive comments to any journal entry, or click on the name of its author to send a private message.
Posts: This is where you can leave an encouraging message for Luke G and family, and to read thoughts left by others! If you have something pressing you'd like suggest that everyone sees (e.g. a fundraiser or upcoming event you're spearheading), please don't hesitate to contact us via private message so we can consider sharing it more widely in the Journal sections. There will undoubtedly be many coordinated efforts and events ahead, and we want to make certain they’re organized and publicized through this site to help drive the greatest possible impact.
Calendar: Please see this important section to learn what the family needs NOW. This will be an especially helpful section for locals in close proximity to Luke G. This is an up-to-date calendar which will list the family's immediate needs such as child-care, rides, and meals to help most in the short term. If you see a need posted and can fill it, please sign up through the calendar page directly (i.e. not through private communication) to let us and others know that you've committed to that need. Please check back often to help out with the most recently posted needs!
Notifications: After clicking “Follow” above, you’ll then see a tab to manage “Notifications”. If you feel you’re receiving too many or too few email notifications, please check this section to tailor notifications to your areas of interest. For example, if you want to receive journal updates but not new calendar posts, or any combination of notifications from this site, you can do set them to your preference this section.
Don’t Forget! If you haven’t done so already, please click “Follow” on the top right. It’s your very next step to showing your support!