New Chapter (Day +253)

Monday, December 18, 2023 · by John Lilly

Today's a major & positive health milestone for Sam, as he will enter 2024 with no detectable cancer and no expected procedures (other than some surveillance).

It's hard to explain the jumble of emotions. I'm in the waiting room here at Stanford Childrens -- just sent him back to have his chest port removed after 18 months. Getting that out means they expect the blood draws to be minimal going forward, no chemo expected, things like that. It's still (always) hard to see him go back to the OR, but this time marks such a significant point -- he'll get the port hardware out so that he can start running, playing pick up soccer, and generally be not-a-patient again. It reflects that 9 months post bone marrow transplant, we can't see any evidence of his leukemia. And just broadly, the end of this chapter and the start of a new one for him.

We will maybe never not worry about what's in store -- but whatever will come, will come. Sam's engaged with all of this with a grace and equanimity that's been astonishing for Kathy & me to see, and has taught us a lot about how to be as well.

It's difficult to walk around here knowing that these families may be at various stages of their own health journeys & challenges -- that's something that was probably never as visible to me as it should have been, and I'm truly grateful to be able to see now. But I ache for the families who may go through the holidays and beyond in difficult circumstances. Lots for our family to work on and pay forward in the coming months & years & decades.

For today, though 2 emotions dominate: (1) extreme gratitude for everyone who's gotten Sam and us this far, and (2) unbelievable excitement and curiosity to see what this next chapter holds for Sam, and for us.

Just got the text to go pick up Sam in the recovery room. Gotta jump. 😀

Be well; hug your family; happy holidays!

♥ 41 hearts

18 comments

Dawn Robertson · Monday, December 18, 2023
Bring on 2024!
DJ Patil · Monday, December 18, 2023
HUGE!!!!!!!!
Imran Maskatia · Monday, December 18, 2023
Very happy to see this milestone. Congrats!
Cindy McLaughlin · Monday, December 18, 2023
Wow. Oof. What a milestone. We're right here feeling your gratitude and relief and hope alongside you. Happy Happy Holidays and a huge hug especially to Sam.
Paige, Zac, Max, and Bel Cook · Monday, December 18, 2023
Thank you for sharing these emotions, John. Please hug Kathy for us. Team Sam joy!!! While general anesthesia isn’t his favorite, We are so happy Sam had his hardware removed.
Rebecca Sheddrick · Monday, December 18, 2023
Such an amazing way to close out the year!
Ellen Levy · Monday, December 18, 2023
This news just made my day (year?)! Couldn't be happier for the whole family. Goodness only knows Team Sam earned this one! I share your curiosity as to what (a so-much-less-encumbered) life has in store for Sam!
Emily Mencken · Monday, December 18, 2023
The absolute best news. What an amazing milestone! I am so glad for you all.
Ken Eddings · Monday, December 18, 2023
Wonderful news!
J'Ann Schoonmaker Allen · Monday, December 18, 2023
Thanks for great news, John. You and Kathy rock!
Anabel Pearson · Monday, December 18, 2023
So excited for Sam to resume teenage life and enjoy his senior year! Thankful for the last surgery ! It’s over for you guys! Best Christmas story .
Helen Yeni-Komshian · Monday, December 18, 2023
I’m so so happy for Sam and the whole family! What wonderful news and the port coming out seems like a very tangible shedding of the patient role. Hooray!!!!!
Jim Sturtevant · Tuesday, December 19, 2023
This is such wonderful news all the more welcome this time of year! Best to you all!
Joe Shortt · Tuesday, December 19, 2023
If I may quote Eleanor Roosevelt, “Yesterday is history , tomorrow a mystery and today a gift; that’s why it’s called the present .” Merry Christmas
Gowri G · Tuesday, December 19, 2023
❤️❤️❤️
Eric Cheng · Tuesday, December 19, 2023
I am overjoyed to read this--what a journey. Here's to the next chapter, indeed!
Sean White · Tuesday, December 19, 2023
An amazing milestone and a fantastic present for the holidays!
Richard Morgan · Tuesday, December 19, 2023
The absolute best. What a wonderful milestone for this amazing person