Friday, June 27, 2008

Back at MDA

Day +394

We are back at MDA in the Emergency Center, waiting for Ann to be admitted. For those of you doing a double take and thinking "Whoa! That was fast", it was so let me catch you up.

Ann had a follow up with her local hematologist this morning and at MDA's insistence he drew a more detailed set of labs. Mainly what Dr. Kebriaei was looking for was how high Ann's LDH was, because she suspected PTLD. Which if you look back to our October 2007 archives you will see was the cause of Ann's first set of enlarged nodes. As it turns out the LDH numbers aren't that high 164 IU/L, which is the bottom end of normal for an adult. Does that mean the PTLD has not come back? Unfortunately, No. PTLD does not always cause high LDH in it's opening stages.

So exactly why are we at MDA, instead of crossing all the "t"s and dotting the "i"s on our up coming house purchase Monday, and getting set to move? Doctor Bienvenu (the local Hematologist) is pretty thorough, and after a month of elevated WBC counts he did a peripherial blood smear (several actually) this morning. After looking through several samples--in his own words, "very hard" he discovered 3 unusual cells.

He said they did not appear to be lymphoid blast cells (read: product of Ann's original leukemia). At the same time, he is at a loss as to how to accurately describe them beyond "strange". All the other partners in his practice came to the same conclusion: those are weird looking, but we don't know what they are. So he called MDA and spoke to Doctor Kebriaei, who basically told us to drop everything and head to Houston pronto. Her plan is treat Ann inpatient, probably on the BMT floor of the hospital, for whatever is going on.

We asked Doctor Bienvenu if we should cancel our closing or abandon the sale. He said "No". So we only made one stop to our attorney's office to sign a power of attorney so that Dixie can close the sale for us.

Turns out with heavy traffic and construction you can make the trip from Baton Rouge to Houston in about 4 hours and 15 minutes...if you don't mind excessive speeding the entire way.

Between the elevated WBC count for a month, the two swollen nodes, and the 3 "weird" cells, something is clearly wrong. It could be PTLD, or a leukemia relapse, or a reaction by Ann's new immature immune system. Or it could be something else...right now we don't know much.


pj said...

Thinking of you and anxiously awaiting news that this is minor silly weirdness and nothing more.

Sue said...

ann - you don't know me, but i visit your blog and i am praying for you.

sue de tarnowsky

Joe said...

Hey Anne,

I have been following your story since I read about you on the L&L site.

My wife began her journey with ALL PH+ just about the same time as yours. She is at day +322 and we have had a few scares along the way too.

Know that we are praying for you!

Joe bevgibbonspage

Anonymous said...

Ann and Chris,
I have been following your blog for a long time. Please know that you are in my thoughts and prayers.

Susan Carrier said...

Thanks so much, Chris and Ann, for keeping us updated during this crisis. I've been a nervous wreck, checking constantly for updates.

I'm glad that Dixie is pinch hitting on the house closing.

Much love to you both.

Seena said...

I came across your site while googling for skin GVHD remedies. My son had AML for which he underwent a cord blood transplant in '06. Currently dealing with GVHD issues and severe developmental disabilites (he is 5 now). Have been following your progress since the time I stopped by your site (I learned about CeraVe cream from you:)). Have faith, this scare too shall pass...sending love and prayers your way.