Today Reese spent the day in Portola Valley with her whole family. I have mentioned before that a friend from Winnetka, Ceylan, connected me with a generous family here who offered us the use of their home for two weeks over the holidays. A Christmas gift of the purest nature… the kindness of a stranger, a selfless gift without reciprocation. This blessing to my family, to have quality time in a home environment (that happens to be situated in a beautiful mountain range) was an incredible gift.
Reese can spend time in Portola Valley because it is near the Stanford’s Children’s Hospital ER. She needs to be within a 20 minute drive of a Children’s Hospital. The Family House is right on UCSF campus, a short walk from Benioff. But the fresh mountain air does her well and it has been worth the drive to have her spend some time in Portola Valley over the holidays.
If Reese could go home tomorrow, she wouldn’t be able to go to Winnetka. Even though it is 17 miles from Lurie Children’s Hospital in Chicago, it takes much longer than 20 minutes. It has taken us up to 1 1/2 hours to make this “short” drive. So while I ache for my yellow house (I can’t even explain how much) it isn’t an option no matter how the cards are played going forward. If we returned to Illinois tomorrow, we would probably be staying at the Ronald McDonald house in the city, and walking to Lurie 3x a week for appointments. As you know, we intend to stay in SF until our doctor has finished Reese’s “transplant”. How long this will be is yet to be determined… but I am hopeful that Reese’s t-cells will be functioning, and it could be in the next few months.
What are functioning t-cells? We have been carefully watching Reese’s CD4 t-cells come back. These were completely taken out at transplant, replaced by someone else’s cells, and then completely suppressed for months to combat her gvhd. Well, the boys are back in town! Her CD4s are up to 180 this week!! 200 means we can test for function. If they function as they should, she is off isolation!! I don’t get too excited about this, yet, because we expect they aren’t functioning as they should. There are still many immunosuppressants that need to be weaned, and her doctors suspect that some tapers will need to happen before we see functioning t-cells. BUT, they are growing, and we are moving in the right direction. Basically, functioning CD4 t-cells over 200 = yellow house!!
My parents are staying in CA to help my family, to keep us together. Without them, it would not be possible for Quinn and Claire to stay so close to Reese. They are staying in Portola Valley for another week and then we rented them an apartment in Daly City until the end of January. If anyone knows of a place, for a week or a month, in February or March, please let me know. We are looking south of San Francisco. Thank you!!
Tomorrow Reese spends the day inpatient. She will be admitted at 8am and leave when her infusions are complete. This is happening because the infusion center is closed for the holiday again this week. She doesn’t like going back to the “hospital”, but she does like seeing her friends, the nurses. 🙂