Oh Henry, here we go...

I have pictures to post of Henry's first birthday. I have stories to tell, memories to treasure, and updates that will make it to this blog eventually. However, life hasn't made it too easy to get this blog up-to-date.

Currently, as I type, I am standing in a pediatric intensive care unit (PICU). A year ago it was NICU, now PICU. Same kid... very different diagnosis. Henry was diagnosed with leukemia today. It seems that the last year was just a warm-up to a whole new level of worry/stress.

Let's back up. Yesterday, I took Henry for his routine one year check-up with our pediatrician. We had noticed for about a week, that he had been bruising easier. Yesterday morning, we noticed pettichaie (small red spots) over his arms and legs. As our worry grew, we hoped it was a nutrition issue, since the past month he's been a bit challenging to feed after his palate surgery. Henry's liver was a enlarged, and Dr. Snyder was "quite worried". He sent us for labs. An hour later, at 1205, we got the phone call, "Henry has leukemia". Amazing how three words can forever change your life.

As I cried, Owen brought me a toy, gave me a hug and said, "mommy OK?" Such a sweet boy.

As soon as Bob got to the house to watch Owen, Lucas and I took Henry to Emanuel Children's Hospital. His white blood cell count was 301,000 (normal is less than 10,000). His red blood counts were critically low. While leukemia is a huge worry... the biggest worry when we got here was that his blood was too thick with WBC that he may stroke or have organ failure. So, they put in a breathing tube, so we can keep him still, placed a large line in his neck so we could pherese (fur-ese) his blood. (continually take out his blood, spin it, remove the white blood cells and put back his blood. a process that takes about four hours). We are also giving him red blood cells to help fix his anemia.

So, here we sit. The phereses worked. His WBC are now "only" 52,000. Still crazy high, but not so high to worry about strokes. Today will will get labs to tell us what type of leukemia he has. Two different types, two very different courses of treatment. We will do more phereses. (his WBC will continue to climb until we start chemotherapy). We will get an ultrasound of his heart and liver. Hopefully place a larger IV line to draw labs/give chemo. Do more labs/tests/pokes and prods, and then hopefully remove the breathing tube.

Hopefully by tomorrow night we have an official diagnosis and start figuring out a treatment plan. Hopefully start chemotherapy this weekend.

So, here we stand. It's 0345, and I'm in his room... staring at the most precious of kids. Such an amazingly strong, sweet wonderful baby boy. I just want to hold him and tell him everything will be OK... but I can't. I can only stroke his little arms and whisper to him that I love him very much. That he is so loved, so treasured.

We will now more tomorrow...have more questions tomorrow. We are so lucky to have so many friends and family to support us all. As Lucas says, this is a marathon and not a sprint. We have a long road ahead of us.

I will try to update as I can.