Thursday, September 8, 2011

Day 12

(doesn't want her picture taken... does want to be held at all times)

Well, the day is not over yet.

Taleah did great at the Stevenson's last night (or so they told me). She slept with grandma on the waterbed. Woke up at 3:00, 4:30 and ate pizza and ice cream. She watchd Tangled with grandpa, fell back asleep and came to grammy's at 8:30.

I was able to run this morning (6.5 miles). It was kind of hard but felt pretty good. 3 weeks ago that would have been a breeze... training has obviously been on hold. We are going to do our best to keep it going, but it won't be like it was. The marathon will still be attempted. Hoping it goes well and someone from higher up will be on our side!! :) I also went to work for about 5 hours. It was good, scary, a break, tiring, ect. I had my phone in my pocket and jumped everytime in rang. My mom and dad kept Taleah and Slade. I knew they were in good hands. She had a pretty good day with them. One major meltdown and few minors. She is miserable and you can tell. I can tell she is in pain. The Dr. said to give her oxycodone...I have been refraining from that for a few reasons. I may give her a small dose tonight. Dr. Verma said that the steroids can cause major pains in the muscles and bones. I think Taleah is associating the pain with her port because she keeps complaining of the port. I think I'll try a small amount tonight. Dr. Verma said my job is too keep her comfortable. Dang steroids!

She wants nothing to do with me...or at least it feels that way. She was fine spending the night, fine with me gone at work (minus the 1 meltdown), fine staying at Grammy's while I brought Slade home for a nap, fine to stay there all night. I am not sure if she is associating me, our house with sickness and medicine....who knows. As long as she is happy that is all I care about.

Dr. Verma called with some of the results. Still no sign of leukemia in her spinal fluid. The specific Leukemia blood test (can't remember the name) came back 0.01%, which is great because she said they like to see it at 0.1% at this point in the treatment. Her chromosomes came back in the average group, meaning not good but not bad. So.. as long as her body keeps responding the way it is then we will have a great game plan by the end of this month.

The upcoming (2) Mondays, we will have the chemo (vincristine) here in STG. Anxious, glad to have it here. Man, I am anxious a lot. I better get used to it (seems crazy to live this way). Our next "big day" will be September 26th for the LP, chemo and boen marrow aspiration which will tell us a lot more about the rest of her treatment. My job is to keep her comfortable & healthy to make it up there for the end of this phase. Side note.. she will stop taking seroids after September 24th so at least fasting should be a little better.

I am feeling ok about things. People keep commenting on the fact that I am holding it together, which sometimes I am. I still breakdown. Sometimes I honestly feel numb (hate to even say that). I am a planner, so having the calendar with everything written out for this month helps. Having gone to clinic and seeing how it works helps also. Getting anxious to know what the next phase entails. I have accepted the fact that I can't change it even though I HATE that I can't. We just have to do it. I just want to do it, learn and grow and get it over with!

Again, the love and support is amazing! Thank you!


  1. We are cheering/praying for you guys! Taleah seems to be taking this in stride. Little ones are so resilient. You don't have to be strong ALL the time. It's not expected. My favorite quote of the moment is...

    "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." -Dr. Seuss

    Take care of yourself! lots of hugs and prayers!

  2. Glad to hear things are going well. She's such a strong little thing. Keep it up Taleah!