Saturday, September 11, 2010

The Waiting Game

I love my sleep and often make fun of Dan when he stays up half the night, but I could not sleep last night.  I finally got out of bed and started packing bags, toys, food, books, and my laptop as I prepared for a long day (and most likely night) at the hospital.

It’s weird how my brain has been working, but I got Averi up early so I could give her a bath because I didn’t know when she’d be able to have another tub bath if she was at the hospital.  (She didn’t get a bath last night because my parents paid for our family to go out for dinner and enjoy what might be our last “normal” time together for a while.)
I showed up at the appointment this morning with butterflies in my stomach and cold sweats.  After I answered all the questions, the doctor started talking to me about the different kinds of blood cells, blah, blah, blah…when are we doing the biopsy and when do we get the results?

They finally gave me the option to just continue monitoring her blood every couple of days or doing the biopsy.  I need concrete answers, I want the biopsy.  They then delved deeper into her medical history and told me that they couldn’t do the procedure without approval from cardiology (because she’s had open heart surgery) and from ENT (because of her laryngeal cleft repair and tracheomalacia).

All I understood was that she wasn’t being admitted to the hospital, they weren’t doing the biopsy today, and they obviously didn’t think this was as serious as I did.  My daughter might have leukemia and you want me to go home and sit while you make calls and schedules?

They wanted to test her blood levels again so we went and sat in the waiting room.  We waited for 45 minutes before I finally got up and asked someone why it was taking so long (my nerves were fried so everything felt like it was taking forever).  He said he had her file and didn’t know we were waiting.  Great!

I was really worried about them taking her blood again since her platelets are low (making her bleed and bruise a lot) and she’s such a hard stick.  Luckily it was just a finger prick.  Then we had to wait another hour for the results.  We went for a walk.

When the doctor returned with the results, it was both good and bad.  Her platelets are still really low, the blasts (immature blood cells) have gone down from 10% to 6%, and there are still some other abnormal cells.  They still want to do a biopsy, she doesn’t need to be admitted right now, she will need a platelet transfusion the day before the biopsy is done, and they will call me sometime tonight with the details.

She also explained that, other than leukemia, there are some other possible outcomes.  Transient myeloproliferative disorder (TMD), a condition common in babies with DS, results from rapid growth of abnormal white cells.  It can go away on its own, although it needs to be followed closely since it can also be a precursor to leukemia.  I’m not sure if this is very comforting right now, but I’ll take it.

The doctor did get in contact with cardiology and ENT while we were waiting and ENT said they want to scope her throat to make sure it has healed correctly before the biopsy is done.  I went home with no hope that it would be scheduled any time soon and wondering how I was going to calm myself for the next week or two while our lives hang in the balance.

I received a call at 2:30 with wonderful news.  Averi is scheduled for the platelet transfusion on Monday morning (the soonest it could be done since we have the weekend in the way) and the biopsy will be Tuesday morning.  ENT is going to meet us in the OR to scope her throat and then stay to make sure that there are no complications during the procedure.

The results take at least a day so the soonest we will know what our future holds is Wednesday.  Not my perfect scenario, but the best I could ask for given the circumstances.

I am truly amazed at the love and support that we have received from so many of you.  We are greatly blessed to have such wonderful friends and family.  Thank you for your prayers and please continue to send them our way. :)


The Robisons said...

We love you and your family! Our thoughts and prayers are with you have an amazing daughter! (Both of them, actually) Keep your head up Tiffany...I am in awe and really admire you and your strength and courage!

Tina said...

You've got our prayers as well. Give yourself and your family hugs for me, from me?? What ever the proper way is for saying it, just do it!

heidi marie said...

not sure if i've introduced myself or not, but i found your blog via another.

i will be adding averi to my pray list. hope that you get answers very soon and they are answers you want to hear.

Kendall, Starla, Conner, and Aleck said...

We love you guys! I was thinking of you today so I thought I would check your blog. You are definitely in our prayers.

I love the picture of her at the table in the Sept 9 post. That smile just melts your heart! She is just so happy!

Celeste Ferguson said...

I am so very sorry! I will keep your family, and sweet Averi in our prayers! I love you so much, and I am amazed at your strength. You're such an inspiration to me.

Lauren in GA said...

Oh, Tiffany. I can't imagine the agony that you are in. I am so sorry. My heart was beating so fast as I read this. We will continue to pray. Thank you so much for updating. I am bad about updating my blog and I am so glad that you are so diligent with yours. We all love you.

Rachel said...

Tiffany we will be praying for Averi and your family. I can't believe what all Averi and your family has had to go through, you have been so strong it is amazing. It sounds silly to say good luck with results like this but I mean it I hope they come back quickly and bring good news. We will keep you in our prayers!