Wednesday, September 23, 2009

So much for an internal clock.

Today didn't start exactly as planned. Yesterday was exhausting so at 11:00 last night Tom and I decided rather than pack we should go to bed and get up early. Because that's always a good plan.

The idea was to wake at 5:30 so that we could get on the road by 7:30. In hindsight even that was a bit silly as it was going to take us more than two hours to get ourselves and Rachael packed, Marc ready for school, the slovenly cesspool of shame my van cleaned out and the trash emptied from my bathroom. Why empty the trash in my bathroom? Because my mother (hi mom!) is staying in our house to take care of Marc and there are certain things that go into bathroom trash cans that your mother doesn't need to see. So as you can see, even two hours was a lofty goal if we wanted to leave at 7:30.

Marc was the first up this morning. How is it that our son got up before our 5:30 wake time you ask? I'll tell you how. Because we all overslept and it was 7:06. If you're wondering, we didn't make our goal.

The rest of the day went fine though. We obviously were very late but the staff at MDACC are incredibly understanding. Something about dealing with parents of children with cancer all day that makes them very accommodating.

Our first stop was with Miss Tony who is the lucky lady with the job of sticking all the kids who come in with needles. This woman is so wonderful though that the kids still love her. She spends day in and day out putting needles in children and she has a wall of "love notes" from kids lining her office. That is one special lady. Rachael opted to have her IV line put in today so that she wouldn't have to get stuck again for the rest of the time. She was scared as she always is but she is beyond hiding her face in my chest. Now she watches. And let me tell you all... the girl did not even flinch. The second it was over she was laughing and joking and moving onto more interesting things. My five year old is getting very used to needles. Sad but useful I suppose, if she will be stuck weekly for 48 weeks.

After that we got assessed by anesthesiology to make sure she's healthy for surgery and doesn't have loose teeth.  Do you know that if you go for surgery will get asked no less than 17 times if you have loose teeth?  It's like they are trying to give the child a complex.  "No, the tooth fairy STILL has not visited me, thank you for reminding me that I am an underachiever when it comes to tooth loss."

Then we went to the place where they will teach us about the picc line.  I get to take two 1.5 hour long classes in the next two days and then I have to demonstrate that I can do whatever they are going to show me for those three hours.  We haven't even gotten to the tube that will be in her draining her "fluids".  I say it like "fluids" because what I really mean to say is gross stuff with blood in it but "fluids" is better for mixed company.  Rachael and I agree that the whole idea is disgusting so we're not looking forward to it.  Can I just say right now that I am the mother who gets woozy when her kid has a particularly bad skinned knee?  I'm going to be flushing lines and changing dressings and draining "fluids".  We'll keep a phone nearby and make sure the kids know how to contact Daddy in case Mommy passes out.  I spoke with my brother earlier this week (hi Dean!) and he had to do this for his beautiful new wife when she was recovering from surgery and he assures me that I'll get used to it.  He seems to forget that he was the one who wanted to hear the details from mom's work at the nursing home.  Not me.  I didn't want to hear any of it.  But... it's my daughter and I will be able to do this.  We'll just keep Daddy and 911 on speed dial.

After all that it was off to dinner and a movie.  "Cloudy With A Chance Of Meatballs" is really gross in case you are wondering.  I actually did feel a bit nauseated a few times (hi Jason!).  Tom is laying with her now and I'm getting this few minutes to myself.

She's the first patient of the day tomorrow so our arrival time is 5:30.  I'VE ALREADY PROGRAMMED A WAKE UP CALL MOM.  I'm feeling peace.  I'll be glad when it's over but the anxiety of making the decision and then getting here is over.  We are in motion and what will come will come.  It is now in God and her surgeon's hands.  I trust them both.

I'll try to give quick updates tomorrow so check in.  Let me know if you are reading, I may not always respond but I love seeing your comments.  Thank you friends for loving us, and especially Princess Rachael.


  1. Reading! and Praying continually!


  2. I have to say that I truly giggle while reading your posts and find it AWESOME that in the midst of all of the info, you still say some darn funny things!
    i love ya!