12/22/18 Day +2 out of the hospital

What a couple of days we have had! Reese’s bell ringing was a success and she was SO READY! She was up at 4am on Thursday morning, making up sweet little songs about bells. Then friends and family were sending videos, dancing to I’m So Excited, all morning… we, too, were so excited!! The adrenaline rushing through the room was incredible, it was truly the greatest day. Reese planned for weeks exactly how she wanted her bell ringing ceremony to go. She peered through those doors on so many days, looking for her sisters and dreaming about the big world beyond the BMT isolation unit. Opening them for her was surreal… the emotional rainbow after the storm. “Mommy, are those the happy tears?” Yes, the very happiest.

Reese walked down the hall with our SF family team. Quinn, Claire, Chris, me, Nonnie, Poppy, and Gaga. The warriors, together, we did it. Reese rang the bell three times. I could hardly breathe. The joy, the pride, the love. Many of her team were there, the people who supported her through this incredible journey. We all heard that bell loud and clear. As one of the nurses explained to me, “We have many patients. You were a resident.” The love that poured out for my little girl was incredible.

When we arrived in the lobby, Reese exclaimed, “I remember this place!” My dear girl, had a distant memory, of a place so close (steps away, really) from so long ago. More tears as I think about how long her isolation had been. Then we were headed toward the door. As you know, a few days before her ceremony, Reese told me that she wanted a trolley to take her home. She rode the SF cable car “trolley” with Quinn days before she was admitted, and I think this symbolized the outside world for my little warrior. So I frantically began my search for a trolley on wheels. Chad Lubben sealed the deal for us (thank you) and THE trolley was ready and waiting for Reese’s departure. Three of Reese’s nurses, Lexii, Kate, Allie and also her nurse practitioner, Stephanie, joined us for the trolley ride. These women were a big part of the core of Reese’s recovery, and having them there for the celebration made it that much sweeter. What an incredible family we have at UCSF!

Next we arrived at the Family House, what a special welcome we received there! Quinn and Claire have been a part of this “family” since May, and Reese was finally going to join her sisters! Two hours after we arrived, the BMT team came to cook dinner for all of the families. (We think they were really checking up on Reese, to make her transition a little smoother.;)

Back at home, at Sacred Heart Church in Winnetka, our community was celebrating Candles and Carols. This is a special time when the students perform, including Reese and Quinn’s 4-year-old preschool class. As you saw in the video, our beloved Father Dan rang a bell for Reese and announced her discharge, what a special blessing! Then Reese and Quinn’s classmates sang Jingle Bells with their own little bells. Cardinal Cupich left a voicemail, celebrating Reese’s wonderful news along with us. So special, how the whole day came full circle back to our beloved community back at home.   When we got to the Family House, I received another voicemail from Mignon Loh. Reese’s JMML Exon panel results were back. She is mutation free, for the third time!! YES!! The best day ever!

So how is it going outside the hospital walls? It is WONDERFULLY HARD as we try to find our way. Reese was used to feeling sick in the hospital. As you know, she is “better”, but not better in the sense of how we think of it. She is able to live outside the hospital, but she does not feel like herself, the self that she knows in the world. So the transition is hard, she’s not used to feeling sick in the world. But each hour we all learn a new normal until that normal changes again. And the normals are always changing for the better! One step at a time, loving each other. Today, Ronnie Lott and his family made dinner for us at the Family House. On the way down, our whole family was together, joking and holding hands. Reese simply said, “I feel like I am in love.” Me too. Every night when I go to sleep and every day when I wake up. God, thank you for trusting me with this beautiful life, I am so thankful and so blessed.

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