Thursday, January 31, 2013

Bad News: What We've Been Dreading

Last night, we got the phone call we've been dreading but expecting. Spencer's blast count is up to 20%. A 25% count would be an automatic diagnosis of Leukemia. His numbers have been consistently moving upward so while it's not at the definitive mark, it's on it's way. Even if the percentage is below 25%, it can still be Leukemia, it's just that the magic number of 25% flat out declares that it can be nothing else. Without some miraculous drop in blasts, it's Leukemia. If we give it a little more time, it's going to cross the line. We all know this.

Unfortunately, we're back in a Limbo of sorts. His doctors need to discuss the situation and get back to us (today or tomorrow). Then we will probably all sit down together to discuss the option. As of now, it looks like the options are to start the chemo or wait a few days/weeks to see if that miracle drop happens. And seeing as his doctor needed to look at some literature, I'm guessing they don't see that happen enough if ever.

If that DID happen, it would mean this is just a recurrence of the pre-Leukemic condition he had at birth. However, it's been 3 months since the abnormal cells were found (and they could've been there before that but our appointments were 3 months apart at that point) and this condition would start to resolve itself by now. We would've seen blasts start to decrease and the other healthy cells to increase. That's not happening. It's not going to happen. I'm not being a pessimist, we just know this.

We've been reassured that waiting a few days/weeks would not change the course of treatment and would not affect the success rate. While this chemo isn't super ultra hardcore, it's still chemo. It's like when people say you have a "good" kind of cancer. It's still cancer! So we don't want to subject him to chemo until we're POSITIVE that there's no chance that these abnormal cells will decrease.

All along, the doctors have refused to discuss anything about the treatment with us because there was no reason to. Now there's a reason to and we're starting to discuss it. Because Rainbow is such a wonderful hospital, Spencer's results/case are going to be bounced around to several different doctors, included one the top dogs regarding Leukemia in the country. It's comforting to know they care enough about my son to have the very best people involved. I would stand for nothing less.

I could go into a lot of the emotions I'm feeling and rant about how there are certain people I know who are AWFUL people/parents and just seem to coast through life and how unfair it is. Or how Spencer being admitted to the hospital is going to be so hard on me, Todd, and poor Sully. But right now, I'm just focusing on the medical part of it all and the the facts. If I give into my emotions right now, it's going to be too much to handle. I have to keep my head together.

But last night I cried in the shower for the first time in a long time. The streak is over...


  1. Do you have/can you share info on how to become a bone marrow donor?
    And good thoughts for you and your family. Sometimes bad things happen to good people, but sometimes they turn around, too! Try to stay strong & positive!


    Here is the info for Be The Match through the national registry. It's free to people ages 18-44. We have cord blood banked from Baby Sully and he'd probably be Spencer's best match if it came to that. But plenty of people need marrow so it's a great program!!

  3. Signed up! I will share this left and right. Good luck!