Langerhans Cell Histiocytosis (LCH) – Rare Disease Day 2012

Since today is Rare Disease Day, I decided to recap our experience with Langerhans Cell Histiocytosis (LCH). Langerhans cells are immune cells that are normally present in the skin and mucosa. LCH happens when immature Langerhans cells behave like cancer cells – proliferating, and sometimes travelling through the blood stream to end up in other…

Visitation Plights

We started last week with a little lite shoplifting. The boys and I joined a friend and her son at a large mall. First, we perused some children’s clothing stores. After ambling halfway to the end of the mall, then cruising back to the start for the “pahhtee,” I discovered two unpurchased pairs sun glasses in my jumbo stroller. I happened to be directly in front of the store whence they came. I walked them back to the rack, remarking to myself that stealing is apparently remarkably easy if one plays the role of an overwhelmed mother of three.

Bead Dazzled

We had a colorful week. The boys got to enjoy an overnight dusting of snow, early last week. I slammed their clothes on and sent them out the back door, before the day warmed. Ian paused to remark that his fluffy sweater felt like a life jacket, and then did a remarkable, cartoonish impersonation of an emergency flotation vest blasting full of air and then he bobbed around a bit. They ran and kicked and rolled in the barely-snowy yard. Ian wanted to make a snow man. I put some exam gloves on over my fingerless gloves to help roll a few snow balls before getting breakfast started. Ian came in and wanted some exam gloves too. I buried his fists into a pair, and as he struggled to get his fingers into the right holes, he wailed, “I don’t have as many fingers as these have!” I know the feeling, little buddy.

Three, Two, One, Vinblastine

Yesterday (Friday), Elijah *finally* had his last planned dose of chemo. In three weeks, he will have a full-body PET scan, and if it is at least as good-looking as his previous scan, then he will go to an observation schedule of check-ups every month, then every three months, then 6 months, then annually. He…

Ooooh. Ahhhhh. Yeah, You Might Want to Just Ignore This One.

I think I might dance and giggle. OF COURSE there was a Facebook app that lists a history of my status updates, and now I have brought them here, only slightly edited. To overwhelm your mind. To keep them as mine. ALL MINE. Woah-ha-ha-haaa! Amy If you’re happy and you owe it, hug a Vet!…

Three For Me

Wowee Kazowee, I think I’ve nearly survived my first day solo with my three munchkins. To go back a bit, we brought Elijah home on Friday, March 26, with his NG tube, his apnea monitor and an overwhelming list of care-taking instructions. A home health nurse met us that evening to set us up with…

The Elijah Cannon: Part 4, Treatment Begins

I was amazed by the size of the CHOA Egleston NICU, the quietness of it, the professionalism, and the hosptality. We could tell immediately that they had “it” figured out here. They understood that the experience was more than a baby in a bed – that each baby comes with a family, and each family…

The Elijah Cannon: Part 2, Labor & Delivery

From this point on, I might start inventing details, but I’ll try to keep them interesting.  Hopefully my doula, Kim will be able to provide me some details to fill this in. So much has happened since the L&D event, and during most of my labor, I think my mind escaped to another dimension. So, there…