4/1/19 Day +335 (Day +11 at HOME)

What a blessing to be home! We have quickly gotten back in the routine of living as a family, in a house, and it feels wonderful. There are a million little things that I appreciate about being home, most of which surround three sweet little preschoolers. Each night before I go to sleep, I look out my bedroom windows at the beautiful view. I can see the tall trees, the sky above me, and sometimes the moon. And I always pray, “Please let this be real.”

Reese has been to two appointments at Lurie in Chicago and the transition has been very smooth. Our care was transferred without a hiccup and Reese was even thrilled to find that her favorite Chicago nurse Cindy (who handled her at-home care last year) is now her nurse at Lurie. A familiar face at just the right time. Reese was in kind of a holding pattern our last couple weeks in San Francisco. In an effort to not “rock the boat” (the boat being the vessel that delivered her to Winnetka, without a hitch), nothing was tapered and everything held at a perfect point. We haven’t made any moves, yet, so Reese has continued swimming along at a steady rate. Three immunosuppressants that are related to the gvhd remain: Budesconide, Anakinra, and Jakafi. These all need to come off to get Reese’s immune system functioning at a good level and one of these will likely start a taper later this week (not Jakafi, everyone seems to agree this will be last.) In the meantime, a few meds have been tampered with… a couple eliminated and a couple added. Reese’s outpatient routine continues to be a full time job, it is incredibly time consuming, especially in the morning. I am happy to do it, and thrilled to have the opportunity, but time management and a little help from the big man upstairs will be necessary to get my party of five out the door at 8am each day!

Reese had a bone marrow aspiration just before we left San Francisco. The results from this test have been trickling in and we know that her chimerism continues to be at 100% donor. This is what it’s all about and we are so thankful. My concern at the moment is an EBV viral test that came back positive last week. I just saw it tonight, so I haven’t had a chance to inquire, but this viral reactivation has been negative since we treated it months ago. This matters so I will be looking into it tomorrow.

We flew home last Thursday. On Friday, Reese told me she wanted to ride her big wheel. I looked at my husband, concerned, and decided I would just give her little “pushes” around the block. Reese wanted to ride to Greeley, to ride her “horsey”. There is a horse, at the Greeley playground, that Reese talked about in the hospital. She just wanted to go home to ride her “horse” and she held a picture in her hospital bed. Well, I tell you, this little girl hopped on her big wheel and rode the four blocks to Greeley. With abandon, on her own, fast. I asked her how she did it, I was shocked. “Mommy, my new cells are fast!” Yes, they are. When she saw her horse, she ditched the big wheel and ran across the play ground. Ran. A moment to remember.

Today was Quinn’s first day of junior kindergarten at Sacred Heart. She is so happy to go to school and Reese is handling it like a champ. A lot of prep work went into the moment that Quinn left and Reese stayed, and my resilient girls took it in stride. Onward!

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