Luke reminded me that I've been neglecting posthope. For those who might be wondering how he's doing but aren't on facebook, here are the last several updates (minus some pictures):[...]
Happy 16th Birthday (yesterday) to my strong, kind-hearted, incredible, inspiring baby boy. He doesn't think he's any of those things (except for kind-hearted), but he really is.[...]
Happy New Year! Luke’s CT was clear. He decided on clear scan octopus instead of clear scan carrot cake this time. We almost made carrot cake too, but he decided that should wait until after his MRI. He ordered an octopus from Heinen’s and researched how he wanted to prepare it. He/we last made octopus in 2014. This guy was much bigger than those were and was kind of intimidating. Luke ended up making grilled octopus with a lemon vinaigrette and served it with Santorini fava (although they weren’t grown on Santorini) and a fennel, orange and olive salad. He didn’t eat seafood for most of the time after becoming a vegetarian at 9, but he has opened himself up to eating wild caught seafood in the last year or so. I guess he’s officially a pescetarian now, not a vegetarian.[...]
Merry Christmas! Here’s a long overdue Luke update. He’s doing really well. He has completed 12 cycles of maintenance. He’ll start his 13th cycle tomorrow. Each 28 day cycle includes a daily chemo pill, chemo infusions one day a week for three weeks, then one week off. He generally feels pretty decent after chemo, aside from a bad taste in his mouth and some nausea. He also notices that his body needs extra sleep that night. He had to take a break from one of the chemo drugs for 28 days on either side of his foot surgery due to bleeding risks with that drug. If you know me or are used to reading Luke updates, you can probably guess that that makes me nervous. What doesn’t though?[...]
"We're all still alive and doing well." That was Luke's quote 5 months ago when he woke up on the day we left for Greece, and it's something I think about every day.
Making it to the end of his incredibly harsh treatment protocol a year ago was big and having made it a year past that now is even bigger. Since we decided to try maintenance, it wasn't his last chemo, but that's ok. Today also marks 2 years and 3 months since we first heard the word sarcoma in reference to our little guy.[...]
Luke had his scheduled CT and MRI yesterday. We heard a little while ago that they were clear! 26 months since diagnosis with stage 4 ARMS, 11 months since finishing front line treatment, 9 months into maintenance. There's still plenty of uncertainty for the future, but we can breathe and count our blessings for (hopefully) another 3 months. Now it's time for me to make clear scan carrot cake to celebrate these results! [...]
I accidentally chose a photo of a Cal's teammate for my last post instead of the one of Luke finishing just ahead of me. Posthope doesn't allow me to edit photos on posts, so here's the one of us! [...]
My incredible, inspiring boy and I finished our first half marathon today. When he suggested 11 months ago that we run this race, I worried that I might end having to run in his memory. To have him my my side today and to see him cross the finish line just in front of me today was emotional to say the least. So very grateful. So proud of my boy and of myself, and so proud to be a part of the Cal's Angels team.
Sending so much love to the families whose kids are no longer here. It's just not fair. [...]
Today was Luke's first cross country meet of the season -- what a difference a year makes! The hair did not slow him down!The meet was moved from Monday to today because of the heat on Monday. That worked out for Luke since he had chemo on Monday. [...]
2 years ago today at North Avenue beach, I first heard the word sarcoma spoken about our son.
Luke’s MRI was on a Friday night. He took a call from the pediatrician on Saturday morning while Paul and I were at Kate’s volleyball tournament. He texted me late morning to say that the doctor had called a couple hours earlier and sent me the number where she could be reached (not her office number). He says he waited to let me know because “I didn’t want you to think it was urgent and feel like you had to call her while you were watching Kate play volleyball and hanging out at the beach.” Thanks sweet boy. I had a feeling the Saturday morning call might be a bad sign, but I figured she could also be calling to put our minds at ease for the rest of the weekend. I somehow wasn’t really thinking cancer and neither was Paul. He stayed at the court, while I walked over to a more sheltered area to make the call. I got more nervous as I dialed the number. "Hi Mrs. Gregory, how are you?" "Pretty worried right now." "Well, unfortunately, you have right to be." Then she started throwing out words that you hope and pray you never have to hear about your child, or anyone else's child. Sarcoma, infiltrative characteristics, oncologist, pediatric orthopedic oncologist, first thing Monday morning…We got the full diagnosis of stage 4 alveolar rhabdomyosarcoma several days later.[...]