Luke has continued to do remarkably well since I last wrote. He has gone to full days of school followed by cross country practices, has kept up with his school work and hasn’t skipped even one evening walk with Penny. Oh yeah, he’s also planning to run for class president.[...]
Luke G - Journal
Read Entries & Updates
Luke has been feeling much better since I last wrote. He’s been eating well and has gotten his weight back up over 100 (barely). We did make it to the air show on Sunday. It was spectacular -- the Blue Angels flew directly over our friend’s roof deck twice![...]
I thought I posted this last night, but apparently not. The todays now refer to yesterday :).
A lot of anniversaries lately. Today marks one year since we got Luke's official diagnosis of stage 4 alveolar rhabdomyosarcoma. When we checked in for Luke's baseline echocardiogram last year, we were told that the oncologist wanted us to stop by to see her after the test. We had been waiting for PET scan and bone marrow biopsy results, and I felt like it wasn't a good sign that she wanted to see us in person. It sure wasn't. That's when we heard it was stage 4, most likely rhabdo. That night, the surgeon called to say that the final pathology report confirmed alveolar rhabdomyosarcoma.[...]
One year ago Sunday, we first heard the word sarcoma in reference to our little guy. The next couple of weeks were a surreal whirlwind of doctor appointments, scans, surgical procedures and of course lots of tears in a rush to get an accurate diagnosis and start treatment as quickly as possible. Luke's surgical biopsy which confirmed small round blue cell malignancy was a year ago today. Today, we spent all day in clinic for his week 41 chemo. He's wasn’t feeling well when we got home, but fell asleep a couple of hours ago.[...]
We got home from our road trip this morning. The rest of our trip was terrific, but it doesn’t feel right to write about that right now.
Our friend Mike passed away on Saturday evening. Mike and his family lived in Boston. He was a year younger than Luke and was diagnosed with stage 4 ARMS in April of 2016. Mike's scans were clear a few months into his treatment, but he relapsed a few months after that. I met his mom through a Facebook rhabdo support group a couple of months after Luke was diagnosed. We quickly became each other's rhabdo moms, but only through texts until last week. On Wednesday, I drove into Boston to have dinner with her near the hospital. On Thursday, we spent a fantastic, but now bittersweet, evening at the Red Sox game. Luke's friend's dad arranged another meetup with Chris Sale, and we invited Mike and his family. Mike was in the hospital, but his team of doctors at Boston Children's was generous with passes and short leaves of absence, so when they heard he wanted to go to the game, they worked things out to make it happen. Mike was weak, but refused a wheelchair at the ballpark. He and Luke spent time before the game chatting with Chris Sale. During the game, the boys sat together and got to know each other. Luke really enjoyed hanging out with him. We all knew Mike was very sick and that there was cancer all over his body, but no one expected things to turn this quickly. On Friday afternoon, his lungs stopped working properly after what they expected to be a routine drain of excess lung fluid. Michael was an amazingly strong, determined, beautiful boy. He has inspired Luke along the way and will continue to do so.[...]
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!