9/23/18 BMT Day +144 Quinn/Reese

Reese’s steroid wean last Thursday is a success! We are sitting at 1.0, hallelujah!! It only took 3.5 months, but we did it!! This is a milestone I dreamt about so many times, I am very thankful that we are HERE! Our next goal, the much safer 0.5 (and not to be too demanding, but I’d like to do it in under 3 months, please!) On that note, I am still hopeful that we will see our yellow house in 2018. It’s another big ask, but I am feeling bold. I hear about how well Reese is doing, and how much progress she is making a lot lately. As new doctors come on rounds each week, they are always very happy with how far she has come since their last hospital stint. Of course, most BMT patients are around for one set of doctor rounds (they only come on every six weeks or so) but we have had the opportunity to REALLY get to know some of our doctors, and we love them so much. Hearing about her progress and seeing it through their eyes is so helpful because I can’t really see it the way they do. I am here for the daily grind and her progress is so painfully slow. But when I can look at it month to month, that is when I can see how far we have come. And 1.0 is a big marker for that. My little supergirl is making it happen.

Reese’s days are pretty mixed still, good and bad. Her mornings tend to be tougher and it gets better as the day goes. Nausea continues to plague her, though not nearly to the level it did before last Wednesday. She is much better and a lot more “REESE” comes out everyday. It’s a good thing that she is available for fun, because fun came to her this past weekend. Her bestie Maddie flew into town with my bestie Katie and it was girls’ day, everyday! The girls shopped at all three stores, drew, played, read books, and had a pajama party. To use Reese’s words, “Best Friends Forever!” The best medicine. Our friends from Sacred Heart, Colleen and Tony, were also in town this past weekend. They showed up outside Reese’s window with pink balloons and a sign, bringing the love from Winnetka to San Francisco. Reese was thrilled. I have the best village.

Reese is still diabetic and there has been a ton of drama lately figuring out her insulin (for example, we had to give her apple juice three times in the middle of the night because she dropped too low.) It’s changing by the day. This drama is so worth it because it is created by the fact that she is slowly getting better! She won’t be diabetic for long, I hope! Another benefit to the steroid wean. I am also praying for a CMV negative test tomorrow. The reactivation of this virus has plagued Reese for months, at very low levels. But even low levels need to be treated with meds, and the meds are doing harm to Reese, her kidneys and her counts. It is at the lowest possible level, I’d love for it to just slip undetectable, and stay that way.

The picture below has stayed with me since I took it on Saturday morning. I keep revisiting it, over and over. It’s Quinn, in Reese’s dress. But it’s not just Quinn, it’s Reese, too. I see her spirit here. Every once in awhile I capture both, in one. They are identical twins, of course, and they share the same features. The same beautiful blue eyes, scrunchy little noses, long lean torsos, blond wavy hair… but they are always different to me. I have never thought they were alike. But every once in awhile, it takes my breath away, when I can see both in one. Because they started out that way, as one baby. It’s magical. So here is a picture of my beautiful Quinn. Who shares Reese’s spirit with us, in a way that Reese wishes she could, dancing on a path of flowers, sun shining, lavender in the air. That’s my Quinn. And my Reese. My beautiful 4-year-old girls on a beautiful path in the beautiful sunshine, giggles in the air with the wisdom of innocence. As it should be.

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