Countdown T-13
This is Haley again. Mom is having difficulty putting two words together these days, so I’m filling in.
Wow, there is so much to say! I went up to New York to see Dr. “O” for my transplant check-up. The trip itself was amusing– between mom’s driving and grandpa’s passenger seat driving, I wish I could have slept through the whole thing. And even though we arrived in New York very late, Auntie Lori and Uncle Lenny we there to greet me with their usual warm smiles. I also got to spend a bit of time with Sam, Alex, and Jonah.
Dr. O is the head of the pediatric bone marrow transplant program, and the one who literally wrote the cookbook on infant bone marrow transplant back in the 60s. He’s a nice man who likes to make funny faces at me while doing the examination. He takes special care to check out my skin, my ear (which I pick all the time), and my mouth. Then he and Mom talk for a long time, mostly about my eating (or lack of it) and walking, and their link to the Tacrolimus medicine I’m on. He decides to try weaning me off the Tacro again (they have to wean me off the med over the course of several weeks, since it’s so incredibly strong). We’ve tried this before, only to have my skin explode in rashes and other problems.
But this is the cool part: instead of taking Tacro every 8 hours (9 a.m, 5 p.m. and 1 a.m.) in smaller doses, I only have to take it every 12 hours (9 a.m., 9 p.m.). This means that I can sleep through the night. This also means that anyone who’s had to give me the Tacro at that awful hour can sleep through the night. This also means that no one has to prepare the tacro in a syringe way in advance and then wrap it in ice, and transport it around if I’m not home at 5 p.m. Since April, I’ve been doing the three times daily regimen. So this is a big ginormous step for all of us. Yay!
So far, I haven’t noticed a change in my walking or eating (in fact, I’ve been vomiting a lot more lately), but it’s only been a few days.
The other good news is that, yes, I will be getting my mediport out! That’s the annoying thing under my skin that I constantly tug at. And that’s the place where they tried to take blood this time, only a) no blood was coming out so they had to contort my body to get the blood flow going, and b) by the time they got to me, my numbing cream wore off. Two nurses and a lot of screaming later, they got all they needed, and left me and my mediport alone.
The not-so-good news is that I’ll need another bone marrow aspirate (when they drill a whole into my bone marrow and take a sample). It’s what they do when the year is up to make sure that indeed the new bone marrow is all new (and none of my old bad cells). It’s routine, but I do very badly under anesthesia. Plus the last time they did it, I was just a few months old, and I’m bound to feel this one. So I’m a bit nervous about it.
One year ago today, I was admitted to the hospital to start this whole ordeal. I will hopefully never remember this year, and even though it was hard on many people (most of all my sister Anna Boo), I am thakful for everyone’s love and warm wishes sent my way. I’ve felt all of it.
Ok, time for my anti-viral meds, and some Elmo time.
Oh yeah, Mom wants me to remind everyone to please write something to me so it can be added in the little book she’ll be making me soon.
Oh yeah, and check out my pictures, there are new ones added everyday!
