Hi, everyone ~
Here's our new word of the day: Neutropenia. Now for the 101 part...
Ethan's chemotherapy agents have effectively shut down his bone marrow's ability to produce white blood cells (WBCs). When his WBC count falls, he becomes immune deficient. Since we started his treatment 2 weeks ago, we have been closely monitoring lots of things, including his WBC. In particular, we're watching for two special types of white blood cells (or neutrophils) that are called Segs and Bands. Segs and Bands play a key role in fighting infection. The metric we use is referred to as Absolute Neutrophil Count (ANC) and is derived as follows:
Actual Number of White Blood Cells*(Segs + Bands)/100
If ANC falls below 500, you are said to be Neutropenic and are considered to be dangerously immune deficient. Before we began our adventure, Ethan's WBC were 10,600 and his ANC was 4,500. By last Thursday (Day 8), his numbers had fallen to 1,100 and 700 respectively. Yesterday (Day 12), his WBC was 300 and no ANC was detected. Welcome to Neutropenia 101.
Its kind of a different set of rules. A fever over 100.5 gets you a one-way ticket to the hospital. No fresh fruits or vegetables unless the peel can be entirely removed. No enclosed spaces with unknown people (grocery stores, malls, restaurants). No fast food. Absolutely no sick contacts. Everyone who enters our door must first wash their hands. While at the doctors office or hospital, we have to remain sequestered in a private room or wear masks. Putting a mask on Ethan is like trying to tie spaghetti onto an egg.
We've also suspended the VP-16 chemotherapy that he was receiving every night at home. In its place, he gets a neupogen shot in his leg. I've already used up spaghetti and eggs, so I probably can't begin to describe this process and do it justice. Dr. Horn suspects we'll be doing this for a week or 10 days before his WBC/ANC has sufficiently recovered to resume our cycle.
Last night at 3:00 am, Ethan woke up with a few painful irritations and was running a fever. We've been teetering on the brink of a hospital admission since then. We spent today at the Doctor's office and will do the same tomorrow. They're really on the fence about whether or not to admit him, so are willing to keep him under close observation during the day for now. This changes from hour to hour, so I'm not sure how long we'll last. For now though, its helpful to have a room full of nurses there when its time to give him the neupogen shot. With all of the arms and legs that are flying around, there still don't seem to be enough to get the shot in. I hope Bert & I don't need to practice on each other again.
On another note, Ethan started to loose his first bits of hair today. Believe it or not, I wasn't sure what was happening for the first few hours, except that I kept pulling it off my shirt thinking it was from our cat and wondering how I kept getting more when we were in a room by ourselves. Oh, well. Ethan will probably be in commando mode soon, but I'm sure he'll be just as adorable!
Bert & I have prepared for these down points and understood that this was a normal part of the cycle. It was still hard to see it come. We're not getting a lot of sleep and eating is kind of a luxury. I was on my way to the Doctor's office this morning *STARVING* when I realized I needed gas. While getting ready to pay, I actually bought a package of beef jerky. What was I thinking!?!? I remembered that people take it while they scale Mt. Everest (at least in the movies) so that it must be packed with something (which is - for sure - the operative word) and I also have vivid memories of my brothers eating it as a kid. But man - it was clearly poor judgment!! Life is weird lately. Beef Jerky is weirder.
We'll get word out to everyone if things head south on us. For now, though, we're just taking each day at a time.
Kim, Bert, Ethan and Kyra