Tuesday, November 18 Doctor visit

We went to St. Louis yesterday to see Dr. Vij. Didn't get home 'til after 9 last night. I'll try to fill you all in as best I can, but we didn't get very good news.

Dr. Vij now thinks Greg has two diseases going on in his bone marrow. In addition to the Multiple Myeloma, he believes Greg also has Myelodisplasia (or Myelodysplastic syndromes ). I haven't had a chance to look this up yet, or even to check the spelling, but this is not good.

Basically, in layman's terms, this means his bone marrow has stopped producing cells (whites, reds & platelets). He suspects this is why his blood counts are so low now and it also is probably be why he had so much trouble collecting stem cells last May for his transplant.

There is no practical treatment for this. There are some drugs they can try, but they're only about 30 percent effective, and can make him sicker than he is now. The treatment and the disease itself also further complicate any treatment for his multiple myeloma. This myodisplasia thing could be from previous treatment, and it could be from the disease. Hard to tell

He is at very high risk for bleeing and infection (his ANC -- infection fighting white cells -- is at 100 (1500 is good), and his platelets are at 20 (140 is good)). So, no hanging around kids (yeah, right!), no climbing ladders, and LOTS of hand sanitizer.

The plan is to check his blood levels twice a week for the next 6 weeks or so. See if they go up on their own. They'll transfuse as necessary, but too many platelete transfusions can cause him to start rejecting them. If we can get to the pre-pneumonia levels, it'll be OK, even though thats still low -- just not as low as it is now. Then, on January 9, we go back to see Vij, and they will do another bone marrow biopsy then.

There is one potential "cure" for all this, but we're not real crazy about the odds. They are considering an allogenic stem cell transplant. This is a transplant using donor cells, rather than his own. We're checking to see if the insurance will cover typing his brother and sister to see if they match. However, these are REALLY high risk. There is a 30 percent mortality rate in the first year, and 5 year survival rates are about 10 percent. However, those 10 percent are essentially cured. Its the other 90 percent who don't have it so great.

For those of you asking what you can do, please consider donating blood and platetes. He's going to need them, and the more that are in the system, the better. (I talked a little about this in our last post). Eric tried to give plateletes yesterday at the school blood drive, but his veins are too small. I guess Heroin addict is out for him! He really doesn't like needles all that much anyway.

On the lighter side, I guess Matthew is here for comic relief. After the doctor's visit yesterday, we took him to the Science Center where they have a "Build a Dino" store (affiliated with Build a Bear). He wanted a "plant eater" as he already has two "meat eaters" and they need something to eat (always practical, that one!). So, he settled on a triceratops. They're the one with three horns on the top of their heads. He named it...........Hornee. Hornee went to school today for Show and Tell. I'll probably get a note from the teacher.

I'll post numbers updates as we get them, but I won't be posting daily for right now. Thanks to all for your thoughts & prayers & all your help. We have been blessed with great family and friends and we love you all. I've said it before, but we couldn't get through all of this without you.

Love,

Greg, Ann, Eric & Matthew