Today Reese had her bone marrow aspirate and chimerism blood test! This is the main event, the reason why we are here. To destroy JMML and give my daughter a future, a life back in Winnetka, the simple pleasures of being 4-years-old, freedom from leukemia. The results of these tests will not be back for 1-3 weeks. Our new best case scenario for discharge: June 7.
Reese had a very weepy morning going into her procedure and she came out of anesthesia even more distraught. When the doctor came in to see her at noon he ordered a dose of Quinn. Never one to question medical advise from my trusted doctor, we sent for Quinn and she arrived shortly after 1. The rest of the day was grand. My mom was here with us and my dad brought Claire over after her nap. The girls enjoyed Italian Ice, wall painting, present opening, unicorn making, window coloring, Disney watching, and a few great hugs. A surprise after-work visit from daddy topped it all off. At 9pm tonight Reese was still wide awake, flying high with endearing cuteness and tricking me into playing along instead of enforcing sleep.
A note on my village, which is extensive and stunning, I’d like to comment on the two people leading this fantastic caravan of assist: my parents. Nonnie and Poppy, as they are affectionately known throughout my world. When Reese was diagnosed in December they canceled everything to be a rock in our world… their month long winter hiatus, dinners, events, any appointment that might happen to fall during any moment that they were needed, all in love without reserve. They are behind the scenes, making UCSF happen for Reese. My parents are on from 8am to 8pm, which really isn’t any different than the past six months. But it’s not just about being a warm body, that isn’t what makes someone a great, well, person. They are engaging, all in, focused, and interesting, with unending patience that doesn’t run out. True story. I am blessed.
Today Reese made a simple statement that I can’t get out of my head. She said, “I’m not beautiful.” My sweet little daughter, what thoughts must run through her head. I can assure her that she is the most important kind, so I end with this.
She made broken look beautiful and strong look invincible.
She walked with the universe on her shoulders and made it look like a pair of wings.