Haley’s Giggle

Today was a momentus occasion as Haley received her (hopefully) last infusion of post-bone marrow process. I tried to count how many transfusions and infusions this girl has had over the course of her short sweet lifetime, but I honestly couldn’t. Somewhere in the hundreds, I estimate. And I’m not even counting the constant infusion of medicine and chemo she received for the 7+ weeks she was in the hospital, not to mention the transplant itself that goes in like an infusion. I was just talking about the out-patient stuff, since she’s been born. i even remember the times it would take literally hours just to find a good vein– I remember her screaming onthe top of her tiny lungs. I remember everytime a kink in one of her tubes would stop the infusion and make the process that much longer. I remember the hours holding her while all this was going on. To think that today may be the end of all that has not really sunk in.

This time last year, we were still waiting for word from the hospital when the donor would be available. Those days, and the whole year, crawled on second by agonizing second. This year, the seconds are also creeping along, but only because March 15th cannot come soon enough.

From now until March 15th, I have asked several of the doctors and nurses who took care of her since she was diagnosed to not only write a comment, but to actually contribute to the blog. I hope you will stay tuned for that… favorite nurse is up first.

There are new photos of Haley in the photo gallery, plus snapshots during the time she was in the hospital, our stay in New York with Lori and family, and a few extras. So take a look! more are on the way.

Haley woke up with the same rash on her face that I saw last Fourth of July, the rash that started all of her skin problems. Luckily, it’s nothing to be gravely concerned about, as long as one of her three medicated creams do the trick. She hates having cream put on, even if you do it the most gentle, loving way. Which is why i always whisper, “I know, I know, it’s ok” as I’m doing it (seems to calm her down, or at least distract her). But today for some reason I must not have been saying anything, because the next thing I know, Haley’s saying to me, “I know, I know, i’ts OK.”

For those who have never met her (and even those who have, but haven’t in a while), from the moment she wakes up to the moment she goes to sleep, Haley is the giggliest, wiggliest, happiest (read: easiest) kid in the world. Except when she gets her lotion on, and when she has to eat. I’ve tried every trick in the book. It’s hard to fight the effects of the Tacrolimus, which leave her wholly nauseous and probably with little appetite since it’s supposed to make your food taste metallic or something unpleasant like that. She’ll fight tooth and nail when you try to feed her. Though, once you get the first spoon in, as long as it’s soup with some rice or beans in it, she’ll eat more. The goal of course is to keep her weight high enough so they don’t put in a GI tube. Our nutritionist appointment isn’t until March 20th. So until then, we’re trying every possible food we can. If anyone has had experience with similar issues, particularly with food aversions by way of Tacrolimus, please leave a comment!

Hi everyone! This is Haley. I haven’t written in a very long time. I can tell you that I am so excited for March 15th. One year exactly from my transplant. One year exactly, and I will be declared CAMT free! Of course, I will still be on my nauseating medicine (which Anna now likes to “help” out with). But this means two things:

1) I have as much chance of developing leukemia or aplastic anemia as the next kid, and

2) I have a fully functioning immune system!

The countdown is three weeks. I hope you all are counting with me.

And I hope this lets my parents finally breathe.

I hope I will be able to take a vacation!  My big sister Anna got back from Disney World, having the time of her life. That was her present after such a tough year. I wonder where I will be going. I’ve asked Mom and Dad for a trip to the final four. Not sure they’ll take me there, but if you all recall, that’s what really pulled me through the daily struggle of the transplant.

I’m thinking about getting a dog. Two maybe. Let the allergens fall where they may– I can take it now! I’ve been practicing “nice” to my stuffed animals, and pippie of course. I’m ready for the real deal.

I’m slowly going to out to other kids’ places, and I’m meeting new friends. This is all so much fun for me! I am also constantly being entertained by Anna, and the new songs my mom teaches me. One of which is the “Rehab” song — my part is “no! no! no!” I can’t sing like Anna yet, but I love being so defiant!

My bloodcounts are all normal (ven my red blood cells, which for the longest time were on the low end), and they’ve just said I’m not going to have to get my blood checked anymore, which means no weekly needle stick!

Next week is also my last anti-pneumonia infusion. I only needed it for the year. I hope this means I can get out my mediport, where they insert that ridiculous nail/needle thing. It’s always at risk for infection, so the sooner it comes out the better.  

My skin looks good some days, bad others. Today is a bad day, but i get doused with fluocininide, hydrocortisone, plus lots of lotion-y massages from Mom, and that seems to help.

Problem still is eating. I still would rather not, but I have to start– I haven’t gained weight in two weeks! Luckily, I have a Mom and a nanny who love to cook, and come up with things i might like. Last night, I even had some fish sticks! If I don’t eat soon, and gain weight soon, there will be talk of a GI tube! I’m going to fight like I have been, with every giggly wiggly part of me, and I’m going to gain weight!

OK… start counting y’all! These are exciting times!

Oh, and if you haven’t written anything yet to me, please do. Mom is about to put it all in a book so that when I get older, I can see all of the people who loved and cared about me.