Monday, October 17, 2011

Consolidation- half way

Yep, we did it again. Up and back to SLC in less than 24 hours. Hate to be negative, but it's getting old. My mom mentioned in the car how ironic it is that I am the one who is traveling so much because I have always HATED traveling in the car longer than 1 hour at a time. I guess it must be another lesson for me to learn. I better keep learning. We ended up going to Brianhead for the weekend (pics to come) so the ride up was shortened by an hour. We left Sun night at 8:30 and she slept the entire way. I was concerned that she wouldn't sleep when we arrived, but she did. YAY. She only woke up once during the night for a drink of water and then back to sleep. We had our normal routine for clinic and she was doing so great until they accessed her port. After that, she was extremely emotional. Dr. Barnett came in and she usually LOVES him, but she could barely catch her breath from crying. Broke my heart. That part never gets easier! They decided not to draw labs because we drew them last week and they were great. We will wait until the Friday before the next phase to check them and HOPE that they are good enough to start the next phase!! The RTU was able to get us in early and things went pretty well down there. She was VERY upset to have her little "nap" today. I HATE when they give her the sedation medicine and right before she is "out", she freaks out, tenses her body and claws at me... it must be a crazy feeling for her. I had some serious marks today. However, she did return back to normal quicker today. YAY! The zipper shirt she wore was a hit and she did unzip and open the shirt for nurse Carrie... very impressed.

Side note... when she woke up there was 1 other boy in the recovery area. She was very concerned with him. I told her that he just woke up from his "nap" too and she replied, "But I beat him. I beat the boy waking up." Hmmm.. she might be competitive.

She is almost back to her starting weight. She weighed 30.3 pounds today. They noticed her belly going down but they still think her cheeks are pretty chubby. Her cheeks have gone down...but they are still pretty thick and cute of course!!

What's to come... 2 weeks will hopefully be the start of interim maintenance. It is 56 days long. After talking with Dr. Barnett, he is looking into doing part of it down here. If the hopsital can get the chemo we need in a matter of 24 hour notice and Dr. Marsden feels comfortable having it done here....then we can do 3 out of the 5 visits here. I am PRAYING that we can do that. Each visit is 10 days apart and that could get tricky with my work schedule. I wouldn't have to make arrangements for Slade... I can think of so many great things that would come of a few visits down here. Oh please... that would make my life a little easier. But most importantly... it would make Taleah's life a little easier.

She was loving her 2 bracelets on her ankles and did not want to take them off.

Had to say what a sweet boy he is.. and what a trooper. As much as I focus on Taleah and helping her, he has been a sweetheart. It has to be hard on him too. And he does it.... probably because he has to. But they have the cutest relationship. Taleah said(on the way to PCMC), "I want my brother to come with me. Go pick him up. I miss my brother." So cute.

Grandma Young came to play with Taleah on Friday while Grandpa Young worked on our patio. Taleah LOVED it. I think she wore grandma right out. (yes, she is in the little playroom with Taleah)

That personality of hers is right back where it should be. Some things that I never thought twice of...I cherish every second of. Life has a whole new meaning.

(I selfishly made her sit still while I braided her hair.... I was almost in tears doing it. I have got to let go of this hair thing)

I feel like I should point out some positive things about driving to SLC. I get to spend time with my mom. I get to laugh, joke, and sing with Taleah. We get to spend time with Treena's family. I have time to ponder.

I feel really blessed to have the family we do. Immediate and extended. Everyone has been SO helpful. The Stevensons always take Slade (no questions asked) when we have to be in SLC. It is comforting to know he is so well loved/taken care of. Treena welcomes us with love. My mom gives up time to drive us and be with us during the clinic visits. Family donating time and money for the yard. Neighbors/ward members selflessly giving time,money, food to our family. Friends that send uplifting messages. And so many prayers. I do feel blessed even though I have a bad attitude sometimes. Cancer sucks.... don't get me wrong. Cancer messed with my "plan". BUT cancer teaches a lot of good things. Cancer is still teaching me a lot. So I'll keep learning.


  1. That last pic of her is adorable! Full of spunk and personality. Her hair looks adorable and it seems like she has so much still. I guess I never realized how thick it was. What a beautiful little girl you have.

    That Slade is one cute cookie. It's amazing the kind of bond they create in such short time isn't it? Glad they are such good buddies and they can support themselves through this.

    Glad to hear things are going well and I hope you can get some of next phases' treatments down there. We'll pray for that!

    Have a great week.

  2. I will be praying that your next phase will work out so that it will make your life easier. Your children are beautiful. I love the hat on little Slade. It is a wonderful thing when siblings have a strong bond. Taleah's hair is beautiful and I think that it's ok to not want to let her hair go. I would be the same way. She may not lose her hair. I always think about you and your family. Prayers always.
    Love, Jenni-Ohio

  3. Cute kids! I need to see them soon! It has been too long.

  4. 1. slade is adorable! ahh those cheeks i wanna kiss em!
    2. glad the trip to utah went quick and somewhat painless.. minus the battle wounds :)
    3. i tear up just about every time you talk about the hair decision.. she just has so much still, which is a blessing! love you!

  5. I have been wanting to comment for a while now. I am A Leukemia survivor. I was 17 when I was diagnosed. Everyone told my mom I should shave my head. But my mom just couldn't do it. I never lost all of my hair. I had a lot of chemo! I was lucky but if u are having a hard time with shaving it maybe she won't loose it all. Just wanted to share. Goodluck :)