Halfway through the 2nd phase, all good

Friday, October 21, 2022 · by John Lilly

It's been a very good week -- Sam is doing lots of typical teen things -- doing schoolwork, hanging out with friends, playing video games. More normalcy, and it's great.

We're halfway through the second phase of treatment now (as a reminder, the first phase was Remission Induction (about 10 weeks) and this phase is called Consolidation (about 10 weeks)). We're getting a little bit of clarity on the path ahead -- enough that we're starting to make plans more than a few days ahead of time, which is exciting!

2 more hospital stays during this phase -- Sam will go in this Sunday until probably Tuesday or maybe Wednesday, then he'll do the last of the high dose methotrexate a couple of weeks after that. We'll test his marrow at that point to make sure that he's still in remission (to the resolution of the testing tools, at least.) We're optimistic; numbers are all looking great so far.

The third phase is long -- 120 weeks -- with the first 20 weeks likely to be pretty challenging with some tough chemo drugs. That'll start right after Thanksgiving, and is likely to go through April or so. One scheduled hospitalization around week 17 for a few days, still need to learn about that.

These last few months have felt a little bit "unstuck in time" to use a phrase from Vonnegut -- everything has been so new to us and so day-to-day that we end up doing this calendar mapping a lot just to remind ourselves where we are. At the beginning, things were super clear -- all hands on deck to get Sam stable, out of the ICU, and on a better path. The past few months have been a little less coherent as the weeks have stretched out. So it helps (me, at least) to just keep drawing the map like this, as we learn more about what's ahead. For Sam's part, he continues to handle it all with astonishing equanimity, mostly just annoyed and ready to keep moving through it. 

One amazing thing about today -- I think we'll be able to take a family trip to Maui the week of Thanksgiving that we booked earlier this year! We'd all but given up on it, but it looks like our reservations will just happen to line up during the week we have between phases 2 & 3. We have a lot to figure out -- thinking about how best to get there given airports, etc; what precautions we need to consider, stuff like that -- but it's just really exciting to think about making plans for something, and to get a little bit of a break from our tether to LPCH. 

So some developments to be grateful for, and some things to look forward to. Good week.

♥ 31 hearts

11 comments

David Hornik · Friday, October 21, 2022
❤️ hurray to thanksgiving in Hawaii.
Gowri G · Friday, October 21, 2022
♥️
Bryan Rollins · Friday, October 21, 2022
John, I expect a family picture similar to the one that you, Josh Marks, and I took in Maui.
John Lilly · Friday, October 21, 2022
I do not remember that pic.
kathy howe · Friday, October 21, 2022
I want to see a copy of this pic. Stat. 😂
Scott Kleper · Friday, October 21, 2022
So glad things look 👍 for the trip. You all deserve a getaway!
Michelle Stewart · Friday, October 21, 2022
Fingers crossed - that trip will be wonderful for you all! Thanks for the update!
Andrew Korb · Friday, October 21, 2022
Thanks for overview and update. Lots of love!
Suchi Sairam · Friday, October 21, 2022
Yay for things to look forward to! Much love to all of you. Sam continues to inspire us all. ❤️
Jennifer White · Friday, October 21, 2022
Thanks for the update and map! This is truly a heroic journey for all of you, and I am heartened by the love of your family and the fortitude of Sam. I have all my fingers and toes crossed for Hawaii!!! You all could REALLY use that escape!!
Joe Beninato · Saturday, October 22, 2022
So happy to hear about some normalcy. I hope Hawaii becomes a reality. I believe the great philosopher Jimmy Buffet said something about a change in latitudes = change in attitudes!