One Year Out

Playing dress-up

Last week we passed the one year anniversary of the end of Emily’s treatment. Without a hiccup, praise the Lord. The past year has been one of amazing growth for Emily. She has completely caught up to the average height and weight for her age group, her cognitive development seems perfectly on track, and she’s still a little spit-fire. Turning into a bigger and bigger one everyday. She seriously cracks us all up on an hourly basis. Right now, as I’m sitting at my desk typing, she’s dressed in her “dance” outfit (a leotard and tutu and socks), singing to herself (as loud as she can, so it’s not actually to herself -the more people who hear her the better, in her opinion) while building a train track in the living room. She just came up and informed me that it is high time she begin dance classes, as she’s been waiting FOREVER. In fact, now that she’s five, FIVE, she should be going to dance classes, American Heritage Girls, and the hospital on a regular basis. Why she threw in the hospital, I don’t know, since her visits there aren’t as much fun as they used to be, but I suppose when you’ve lived your entire remembered life in the hospital, it might be a bit hard to let go. So I’ve got American Heritage Girls covered -she begins in the Fall, and she does still go to the hospital on a monthly basis, so I guess it’s time to begin looking for dance classes. Though, to be honest, I’m not sure a dance class could handle her 😀

So a health update: Emily’s been seeing her oncologist once a month for the past year, getting a physical and having labs drawn. Her CBCs (complete blood count) have been great every month! Platelets, White Blood Cells, and Hemoglobin are all exactly where they should be. She hasn’t shown any signs of pain in her legs or hips, and she’s walking completely normal again (no flat feet from neuropathy). She hasn’t even been sick this year! Since she passed her one year anniversary, we get to start spacing our visits to once every two months – and I’m actually okay with that. At one time I couldn’t imagine going a whole week, much less two months, without knowing her numbers -but she’s doing so great, and it’s really nice to not think about it all the time.

The only thing we’re still watching closely is her immunoglobin levels. Ideally her body would be producing enough of these to keep her immune system healthy, and her number would be in the 500-1500 range. Unfortunately her monthly number usually falls between 350-480. All this means is that she’s still receiving monthly IgG infusions, which she actually loves, because it means she gets to go back to the Infusion Room to see her nurses and watch a movie (Now that she’s out of active treatment, she sees her oncologist and gets labs drawn in the adult lab, so no fun treatment or movies).

Next month we’ll have her heart checked to see if it’s been damaged by the chemo. That’s a bit scary. But honestly, it’s not something we can worry about. She’s in God’s hands, and I’m sure her heart is healthy and strong. But prayers would be appreciated.

Throwing out the first pitch at a RiverCats game

just posing for the camera

Receiving her IgG infusion

Feeding her newest cousin, Baby Jay