Days 68 + 69 (May 23-24)
White Blood Cell: 8
ANC: 6.2
Platelets: 144
Hemaglobin: 9.4
This is Haley. I was told to start all my entries like this because people got confused. Today was an extraordinary long day at the clinic. It started at 5:45 (apparently I wake up exactly at this time every monring, even though I should still be sleeping). And even though the cab ride through Central Park and over to the East Side is a thrill, both Mom and I are tired by the time we make it to the hospital at 7:30. My nurses for the day look nice enough until they take off my shirt and poke that enormous needle in my chest. Luckily for me Mom put a hefty dose of lidocaine on the site so I only scream a little. It’s only 8:45 and the four hour IVIg (immunoglubulin IV) transfusion hasn’t even begun. And it’s a long four hours coming. Thank goodness for Benadryl and Music Therapy. The Benadryl helped me sleep the transfusion off a bit, and Music Therapist played her guitar for an hour while I slept to drown out the clinic noise around me so the little sleep that I did get was a deep and sound one.
I was awake when Big Picture attending came in to talk about my red blood cells. They’re still decreasing in number, but he says not to worry yet, so someone please tell my mom that. Speaking of Mom, I said “mama” for the first time. It was to Mommy. I haven’t said it again. Maybe soon I will. I also don’t get what’s so great about cheerios and me eating a few. I mean, big deal, they don’t even have a middle.
Guest today in the clinic was favorite nurse. We made a plan to do lunch next week.
Funny moment of the day was Anna, who came to see me. She was dressed as Cinderella. And there wasn’t even a dress-up party.
haley,
your day sounds rough and probably confusing, although maybe it’s starting to all seem normal. you are a brave and strong little girl and we think of you all the time. i wish they would figure out that red blood cell count so you’re mom can stop worrying and we can all know you’re okay. sounds like you sister has the princess thing really bad. you can be the jock in the family. i hope tomorrow is sunny and that you giggle and feel soft breezes and laugh at/with your sister. love seema
May 25th, 2007 | #
Haley, wow! A 4 hour transfusion doesn’t sound like fun at all. And that needle, yuck! Keep on healing so that you can stop with all the medical stuff. I like the big picture doctor. He knows his stuff. Remind your Mom of that, okay? Remind her too that you came to NY to get new platelets, and you got them, thank you very much, and now you just need time to get better. Getting new platelets is really hard on a body. You tell her that, okay? Say Mama again soon too. She deserves it. And tell her that you love her with those great big baby blues!
May 25th, 2007 | #
Dear Haley,
So good to hear from you, sweetie. You are sounding like such a NYC girl. The plan to do lunch with favorite nurse is SO cosmopolitan. How are we going to keep you down in DC, now that youve seen New York?
I must admit, I was one of the bloggers who initially made a big deal about you eating cheerios. I never even thought about the whole empty middle thing. You really have a way of looking at things that the rest of us just ignore!
And wow to the “mama” thing! I’ll let you in on a little secret. Don’t tell your mom, but for the rest of her life, no matter how old she gets or where she goes, anytime she hears a child yelling the word “mama” (or its many variations)–whether it be in a crowded subway station or a grocery store, or wherever–she will turn around and automatically look for either Anna or you.
Also, hurray for Benadryl that helps bring sleep, and Music Therapists who strum guitars, and Big Picture attendings who seem to know their business, and Favorite Nurses who stop by and visit, and Loving Mommies who work so hard to keep their children well, and especially for Big Sisters who dress up like Cinderella just for the heck of it! xxoo Cristina
May 25th, 2007 | #
Hello lovely–nice to hear from you again. It sounds like you weathered the day very very well, and made your mommy’s day with “mama.” I send hugs, kisses, and hot coffee. I agree with Cristina’s comment from the previous post, that Starbucks should do curbside delivery for your mommy. Maybe one of the nice purchasing agent mommies can arrange it with the manager?
May 25th, 2007 | #