Day +150. Wow. Recently, I covered Reese’s cabinets with pictures from last autumn. It’s bittersweet, as my mom said, looking at these pictures. They are so beautiful, so full of childhood at it’s finest. Last autumn was the last time she was “well”, before THE day. The day being December 11, when our world was rocked. The day she drew the wrong straw and became the 1 in 1.2 million. There is everything before December 11, and everything after. Well Reese likes to look at the pictures and they are so joyful. To her, this was yesterday. Her sense of time is out of whack. To her, dressing up as unicorns for Halloween and playing in the leaves outside her yellow house just happened. The same is true of Mrs. Yakoubek’s 3-year-old preschool class at Sacred Heart. My sweet girls don’t realize that they have moved on. Her teacher and her classmates… my girls don’t understand that those same kids continued school and are now in PreK, that Mrs. Yakoubek has a new class and they have a new teacher. It is too hard to explain and too painful for them to grasp. So what can we do about it? We can do our best and in the meantime, we have school here at the hospital. My girls love to learn and I love to teach, it’s really a great combo. I don’t pretend to think I can touch the authenticity of a play-based rich curriculum, filled with integrated lessons and peer collaboration… but we play preschool games and do ABCs and we are exceeding in the empathy, coping, & resilience learning department.
There are really great things going on that are kind of overshadowed right now by persistent nausea. Reese’s “pain” is substantially better. Her counts are on the rise and trending the way we want as her marrow grows stronger. We have been sitting at 1.0 steroids for over a week and we are prepared to drop to 0.9 on Thursday (now that Reese is at 1.0 her steroid wean will slow to once every two weeks going forward, meaning it will take at least 20 weeks to finish her steroid wean. Yes, she can go home on oral steroids, once her gut can fully absorb.) Reese has a low level EBV reactivation that must go “undetectable” on Monday. This is very important, we do NOT want to treat this infection!! It’s not good. This is a BIG one that I am asking the BIG guy upstairs for help with!! (And as long as I’m asking, I’d love for that pesky CMV to disappear, too.)
As far as Reese’s nausea, it’s cause eludes us. She had an MRI on Thursday to take a better look. I don’t know if you have ever had an MRI- but it is not a walk in the park. Typically kids are sedated for this procedure, intubated, and then oxygen withheld for 10-12 to make them hold their breath. Especially kids under 5, it’s protocol. No thanks. I knew Reese could do it, if she was respected and understood, because I know Reese and so does her team. My only fear was the breath holding. She spent the spring and summer in the hospital, so she never took swimming lessons, so she doesn’t remember how to hold her breath. So I spent time in the morning with Reese and her sisters reading “Not Narwhal” and pretending we were unicorns under the sea, holding our breath. She had it. Then our child life helper Kim (love her) came in with her mini MRI machine and Barbie took her turn. Reese was READY to be unhooked. What is unhooked? From her IV. Reese has not been free of her toobies and IV tree since spring. She was free, and she held my hand, and walked out the door. The joy- oh the joy. But then it was back to business. When we got downstairs it was immediately clear that the techs did not believe in Reese. It was pessimistic, yucky. But she surprised them. She got into the machine, stoic, watching them strap her in once, then add a board on top, strap her in again, pads all around, ear plugs then head phones then another set of noise canceling headphones. I watched her, amazed at her calmness. Her resolve. She slid into the machine, away from me, and the noise started. It was silent and then MACHINE GUN FIRE! Noises. SO loud, so scary, so intimidating. Reese, still, patient, strong, determined. She lasted 30 minutes. I was so proud of my little champion. At 30 minutes she started sobbing, quietly, holding it in. Then it escalated, she was calling for me, crying, from inside the tube with the noises so loud I could barely hear her. They stopped, I went to her, she said it’s taking too long. I said I know, do you want to get it over with or come back tomorrow? Get it over with, she said. Back in she went. Then she had had enough, my little girl, so small, so brave. The next day, the GI doctors came into her hospital room, cheering, her team! They brought her presents, pink Narwhals! They told her they were SO PROUD. They said she did better than 8 and 9 year olds and that they were cheering as the images were coming in, they couldn’t believe it, they were steady and clear! Reese exceeded. That’s my girl. So what did we find out? I was told the MRI is the best case scenario for Reese. Her liver and kidneys are large, we know this, we need to get off some of these meds and TPN. It told us she has an ilius, we knew this, it’s the cause of her vomiting and nausea. Beyond that, she is ok. I pray this lets up so that she can enjoy some of the calories she can now take by mouth! Please bring Reese more and more pink days, til the world is covered in rose tinted happiness, for all of Team Reese!