4/28/19 Day +362

Reese continues to be blooming in Winnetka. Her own home has been just what the doctor ordered and we can see improvement every week. Sometimes, when I am in a different room, I hear the laughter and joy and my brain just pictures the 3-year-old Reese that I knew. The reason: she sounds like Reese again. Silly and clever, giggle fests with her sisters. It is the sweetest music, a home full of the laughter of small children. Our house is never quiet. It is one of the reasons my husband said it was hard to come back to our yellow house, if only for a day, without his family. He flew home twice to take care of business and then flew right back. He said the silence was deafening.
Last week, at clinic at Lurie, Reese got to meet another JMML survivor. His mom and I communicate and I remember dreaming about the day our children would meet, and writing it to his mom from UCSF. How sweet to see them thriving and giggling together. Life is good.
Reese’s albumin continues to look fantastic. It is trending upward… from the 1.6ish it was for months to 2.0, 2.2, 2,6, and now 2.8. This is a great sign that things are healing and also a relief that we aren’t talking about an unknown problem anymore. Unfortunately, her liver numbers have been trending in the wrong direction, though not in a scary zone at this time. We are watching and hoping that it’s an easy fix (last time, her posaconazole level was too high, and after it was adjusted, things quickly got better. As we ride this roller coaster, we LOVE easy fixes.) Reese will go off her LAST pain med this week, Gabapentin (Neurontin.) Yes, she is still on one of them. The taper of these takes an incredible amount of time and we have been working toward this since discharge. Hooray! It goes off on Wednesday.
Reese is GOING TO SCHOOL THIS WEEK. Yes, it’s true. She is going to trial 2-hour-days in the classroom with her sister Quinn. This is a dream come true, a miracle, and the result of so much hard work from my little warrior. She is ready to try, and I am not going to stand in her way. Reese is NOT on isolation and we got the blessing from our team last week and we are arming her teachers with Lysol wipes and Reese will carry her sanitizer (which she is very responsible about using, as you can imagine.) The biggest “schoolhouse” threat to Reese is strep, the second is the flu. Thankfully, we are past flu season. I will be asking the parents of Reese’s class to text me if any member of their household has either of these two illnesses, and I will keep Reese home from class. This is an extra barrier that can only help. I pray for a smooth transition for Reese and that she may experience some of the incredible joy that comes with the play, collaboration, and learning of a classroom. She aches for this and in the past, it was where she thrived. Her last day of school was December 8 of 2017. She was 3-years-old. Since then, she did two very brief camoes during the spring of ’18 (between chemo and before transplant.) I remember watching her lay in her hospital bed, pushing pain buttons and crying for food. I remember glancing at the class newsletter.. the class that she belonged in. All of the lessons, the pictures, the joy that should be hers. I remember the contrast, my tears. My anger, my prayers. She is overdue, over isolated, and she deserves the joy of being a kid, the time has COME, it’s here!

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