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Luke G - Journal

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Posted 2017-09-15T15:14:00Z

Day 390...

Chemo yesterday, school today. My sweet boy continues to surprise, amaze and inspire me.

Luke’s counts were where they needed to be yesterday, so chemo was a go. He had breakfast before we left for clinic and a little apple before chemo started, but hasn’t eaten anything since. As soon as we got home from clinic last night around 5:30, Luke wanted to get Penny out. He was pretty drugged up and really in no shape for a walk, so we headed out by car. We stopped to chat with one of Luke’s friends (a wonderful lady who Penny especially loves to visit for treats) and then continued on to meet another friend with her dog at the park. Luke gets a little irritated when I hover or try to hold on to him. He doesn’t realize how wobbly (as he likes to call it) he really is. I know that the people we met up with last night will let him know that he does need a little help sometimes.[...]

Posted 2017-09-14T02:47:00Z

Day 388...

Luke did run in the cross country race yesterday! He texted me shortly after the end of the school day to say that he was probably not going to run because his stomach was bothering him. He got on the team bus for the away meet though, and when Paul and I got there, he was warming up. The boys finished their warm-up run, stretched a little, huddled up near the starting line, took their places at the line and then they were off! Luke wasn't the fastest guy, but he wasn't the slowest guy either. He ran the whole race at a pace that he knew would work for him, and true to form, he had a great time. People cheered for every runner that went by, so Luke didn't feel like people were cheering for him just to be nice.[...]

Posted 2017-09-12T03:29:41Z

Day 386...

Luke lost the election on Friday, but he had fun giving his speech and is very happy that he ran. I was much sadder than he was and much sadder than I expected to be about the outcome. I'm over the sadness now and am just so proud of him for giving it a shot.[...]

Posted 2017-09-08T04:08:54Z

Delayed again...

Luke's ANC was 150 this morning. It needed to be at least 750 for chemo, so he got another reprieve. We'll try again next Thursday. The doctor said to start his Neupogen injections again to help give his bone marrow a boost. He typically has to give himself an injection daily for about 2 weeks after chemo until his counts recover. This is the first time we've had to resume them after stopping.[...]

Posted 2017-09-06T03:22:00Z

Day 380...

Luke saw the GBS girls volleyball team get a nice win on Thursday night.

He skipped cross country practice on Thursday and Friday because of the low hemoglobin symptoms -fatigue, weakness, shortness of breath, fast heartbeat. Hmm, that's what I feel when I run. [...]

Posted 2017-08-31T21:58:26Z

Day 375...

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.[...]

Posted 2017-08-24T03:41:05Z

Day 367...

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![...]

Posted 2017-08-20T12:28:00Z

One year...

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.[...]

Posted 2017-08-11T02:39:56Z

Day 353...

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.[...]

Posted 2017-08-07T19:49:00Z

Our friend Mike...

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.[...]