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Sweet 16...

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.

Two and a half years ago, we first heard the word sarcoma about our boy. Yesterday, he got to turn 16! Holidays bring on an odd mix of gratitude, joy and fear for me since Luke’s diagnosis. I’ve only said it out loud to a couple of people, but I’m so worried that each one could be the last one. I find myself wanting to make each one awesome, but lacking the oomph to make that happen. Sure, they’ve been really good, and we’re overwhelmingly grateful for each one, but the self-imposed pressure for greatness kind of paralyzes me I guess. And of course I know that each holiday, each any day could be anyone’s last, but that doesn’t seem to kick me into gear.

We never got to meet Riley B, but we have met his family through Cal's Angels. Riley should have turned 10 the day before Luke’s bday and celebrated here with his family. Our hearts go out to them and to everyone else who has to celebrate memories instead.

Luke was scheduled to run in his first track meet last night, but he had to sit it out. His body and left foot are kind of beaten down after jumping back into training as soon as he got the pins out of his foot. The doctor told him that he could run as tolerated, so he ran a mile or two the first time and then went right up to five or six miles at a time, 5+ times a week. Given that the left foot was riddled with rhabdo and had “the heck radiated out of it” and that he still gets weekly chemo, it really is amazing that he runs at all. It was also Kate’s senior night at basketball last night. That plus the track meet put the birthday dinner on hold. Luke and I got some Thai food after we finally left GBS, and he even ordered dessert (mango panna cotta). I also brought crepes from Gotta B Crepes to school for his lunch yesterday. Ryan sent me home with a couple of extra crepes, which Luke was happy to share with some of the staff.

He had chemo Wednesday and it seemed to hit him harder than it usually does. He typically only feels unwell the day of chemo. This time, he felt it through most of Friday. I really hate to think that the chemo might start hitting him harder. We did get it done a day early this week so it wouldn’t affect his birthday. Maybe that was part of the problem.

I think Luke has decided on a place, but I might as well bring it up. Anyone have a great, pescatarian-friendly, not expensive restaurant recommendation? I know there are some foodies out there! Bonus points if you think the staff would be really nice to Luke. He has always loved that his birthday is during Chicago restaurant week, and studied the restaurant week menus last year before making his choice. The previous three or four years, Green Zebra was his easy choice. Last year’s choice ended up being a little disappointing, but we made up for it a couple of weeks later with a special night at Lula Cafe that his doctor helped set up.

Luke will not be getting his drivers license right away, and I’m feeling pretty guilty about that. He’d ask to drive and I’d have some reason to say not this time. We stalled at 15 or 20 practice hours, and it’s been a couple of months since he’s even asked. Fortunately, he doesn’t seem to mind too much and isn’t making me feel worse about it.

I don’t think I’ve mentioned our new dog on posthope. We adopted a one-year-old, 30 pound shelter dog about a month ago. We named him Santo (for Santorini). It’s been a pretty easy transition to two dogs for the most part. The best part is how much he loves Luke. Luke adores Penny, but she's mostly indifferent. Santo is beyond excited to see Luke in the mornings and cries when he gets out of the car for school. It's adorable and is so far worth any extra dog hassle.

Thank you all again for everything.

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Comments (6)

  • kim nealt
    kim nealt

    Happy Birthday to Luke! I hope he has a great day! He is such a positive influence on us all. I have so much admiration for his strength and courage. Sending continued hugs and prayers your way.

    6 months ago · Reply
  • Larry Butler
    Larry Butler

    Thanks for the update Amanda. Sorry Luke didn’t get to run the first meet but if I know Luke he will be back out there soon. I think of Luke often and his passion for running. Continued prayers for you all.

    6 months ago · Reply
  • Carol Sullivan
    Carol Sullivan

    Happy Birthday to Luke. Amanda, you know how you say Luke is strong but he doesn’t see it? That’s how I see you. You are amazing! And you’re doing a great job. Keeping your family in my prayers.

    6 months ago · Reply
  • Laura Cushnie
    Laura Cushnie

    Happy Birthday Luke!!! 🎈🎈🎈🎂🎂🎂🎂 So proud of your determination, strength and poise. You are a true inspiration .

    6 months ago · Reply
  • Lana Gangware
    Lana Gangware

    Happy birthday Dear Luke And many,many many more.......... All best wishes and prayers for You! Love, Mrs Lana from Florida

    6 months ago · Reply
  • Molly McBride
    Molly McBride

    Happy Birthday!

    6 months ago · Reply

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