Thursday, September 16, 2010

Don't Count Your Chickens...

Today was supposed to be the day that we got the final say on what is affecting Averi’s blood.  I told myself I’d wait until 4:00 before calling the office and demanding answers to make sure we weren’t forgotten.

So, when I finally succumbed to my exhaustion at 3:00 I figured I’d sleep for an hour and then call when I woke up if the doctor hadn’t called me first.  Two and a half hours later I woke up and immediately started beating myself up.  Not only had the doctor not called but the clinic was now closed and I was going to have to wait until tomorrow to get the results.  Ahhhhhhh!
(This is Averi's new 'kissy' face...I can't get enough of it!)

Then, just after 6:00, my phone rang.  I don’t know if my desperation was just so tangible that the doctor could feel it at the hospital, but she called.  She explained that, like she said yesterday, Averi does not have Acute Myeloid Leukemia (AML).  If she did, she would have to be admitted to the hospital right away and started on chemo which would leave her in the hospital for over a month.  I let out a sigh of relief that that was not my future.

Knowing that she didn’t have AML, I was ready to know what she did have.  As it turns out, she doesn’t have TMD either, she has Myelodysplastic Syndrome (MDS).  We’ve done enough research for me to know that this isn’t really good news.

The doctor explains that it will not resolve on its own and is often called pre-leukemia because, if not treated, it will turn into leukemia.  The treatment is chemotherapy, you know, that same one that puts you in the hospital for over a month.

She says that the only advantage of having MDS as opposed to AML is that we have a little bit of time.  Instead of turning our lives upside-down today, as would happen if she had AML, we can take our time to go over the different chemo options and plan when we want to start the treatments, which will then turn our lives upside-down.

We are going in as a family on Tuesday to meet with the doctor, have more blood work done, and make some decisions.  The whole thing seems so surreal to me, like I’m telling someone else’s story.  The denial hasn’t worn off yet, but I’m sending out a warning that when the anger hits, it’s gunna hit hard.


Lauren in GA said...

I am so sorry, Tiffany. I truly, truly am. I love you and will keep praying.

That kissy face is fabulous!!

Did you know you posted this post twice?

Vanessa said...

That kissy face makes it so much harder to learn such sad news. Let me know if there is anything at all I can do for you and Dan... I will do it in a heartbeat. I love you guys. I'll even jump in the car and come visit ya'll right now... that is if ya'll still want me to.

Vicki said...

I love, love, love that kissy face!!

You're in our prayers.

The Chuck Smith Family said...

Oh how I LOVE that picture! Praying for you and your family.

The Robisons said... sorry to hear the news :o/ Averi is an amazing little girl with a strong body and an even stronger spirit! She must get it from her Mom...

BTW, when you do have your "angry psychotic mom moment" it is totally justified and okay! We all have them and if you didn't after all that you endure, I'd think there was something wrong with YOU! LOL :o)

Stephanie said...

We love you guys, Tiff. We're keeping your family in our prayers. Please give Averi and Kaili some loves for me. I miss you.

Vanessa said...

I love that little girl! Have I mentioned that before?

Glenn and Melanie said...

The kissy face finally came through. I want to kiss her face. I love you all soooo much!