engrafting

Tuesday, April 11, 2023 · by John Lilly
Things continue to move in the right direction - while we could see positive indicators of engraftment over the weekend, now it’s crystal clear that it’s working. 
You can see from our attached white board chart: 

Overall WBC count was the earliest sign of things working. 4,000 to 11,000 is considered normal, so at 2,200 Sam is well on his way. 
Within the white blood cells, you start looking for neutrophils, which make up a lot of the immune system - getting to 500 starts the clock here - after 3 days above 500 you’re considered engrafted. Zero on Saturday morning, 270 Monday, 620 yesterday and 960 today. 1,800 to 8,000 is considered normal. Being above 500 tomorrow and Thursday is the most important gate for getting him home. 
His red blood cells continue to hang in getting hemoglobin to the system - a little low compared to normal (13.5-17k considered normal) but fine for now. 
And platelets are getting better quickly - 150 is the minimum normal range; Sam is at 80 today. Clotting!
Assuming no setbacks, Sam getting to a reasonable nutrition profile is the last challenge - he’s been eating more normal foods lately and they’re tapering off the IV nutrition.  
So I would think optimistically we can get home Thursday, but Friday might be more likely. Either way, it would be 25 or 26 total days, which is about the best possible path. I had been mentally preparing for 6 weeks; Sam has done so much better. 
So! Now we are shifting towards thinking about how to get ready for life outside. It’ll take 3-4 months for Sam to get T & B cells, and he’ll be very vulnerable to attackers of all sorts during that time. We’re getting the house deep cleaned, changing air filters, getting rid of fresh flowers, etc etc. Much less controlled environment. 
And Sam will still be coming in to clinic multiple times per week, and may be hospitalized once or twice to fight off random infections (almost everyone comes back at least once). 
For this week, goal is to get him home healthy. Then we can turn our focus to a goal of seeing if we can get him to Paly in August to start his senior year. 
Step by step. 
♥ 43 hearts

19 comments

Erin Lavik · Tuesday, April 11, 2023
That is absolutely amazing, wonderful news!
Suchi Sairam · Wednesday, April 12, 2023
Amazing, amazing news ❤️
John Lilly · Wednesday, April 12, 2023
Oops scratch that. Friday or Saturday target for getting home.
Anabel Pearson · Wednesday, April 12, 2023
Great progress!!
Jessica White · Wednesday, April 12, 2023
Love reading these posts! Rooting for you all day long.
Dana Lilly · Wednesday, April 12, 2023
Thanks for the update. This is wonderful news!!! Still sending positive vibes for continued progress!!! ❤️
J'Ann Schoonmaker Allen · Wednesday, April 12, 2023
Most wonderful news!!
Bryan Rollins · Wednesday, April 12, 2023
How great is it that numbers can bring such positive emotion. I love celebrating each step with y'all. Come on neutrophils, keep going up!
Jean Brady · Wednesday, April 12, 2023
So glad about his progress-Team Sam is moving in the right direction!
Joe Shortt · Wednesday, April 12, 2023
Great news , hugs to Sam !
Beth Howe · Wednesday, April 12, 2023
Great progress!! Fingers crossed to be home by the weekend.
Grandma Howe · Wednesday, April 12, 2023
Thank you for your excellent explanation of engraftment. “Get him home healthy.”❤️
Cindy McLaughlin · Wednesday, April 12, 2023
I heart this so so much. Go Sam!!!
David Hornik · Wednesday, April 12, 2023
That’s some amazing stuff. Paly in August for sure!
Richard Morgan · Wednesday, April 12, 2023
What great progress! Let’s go ! (home)
Andrew Korb · Wednesday, April 12, 2023
So glad to see this progress, what a great team is in place. Lots of love to you all!
Michelle Stewart · Wednesday, April 12, 2023
I love this great news!
Jim Sturtevant · Wednesday, April 12, 2023
Thank you for sharing the details of your and Sam's journey. What wonderful news in the data! Take care
Liz O'Donoghue · Wednesday, April 12, 2023
Amazing! Fingers, toes, all body parts are crossed the trend continues.