Tuesday, September 6, 2011

Day 9 & 10

Day 9 was relatively ok. She was clingly, needy and extremely hungry. The whole café rio thing was not a day thing. We purchased another burrito and she has officially finished the 2nd one. Family was so great to help out. I only had 1 kid the entire day… either Slade or Taleah. That made things a lot easier. I feel like they both need my 1 on 1 attention right now. It’s physically/emotionally exhausting. Worth it though, I will do whatever I have to in order to make my kids happy. Scott and I were able to get away for a minute to look at cars. Ironically, we sold our car the night before the diagnosis. We had decided that we wanted something that got a little better gas mileage and something that had 4wd/awd. Now we really need something that will be safe, cheaper, and comfortable for her to ride in. It was a good break from all that is going on. My mom, Tavia and I were able to go for a pedicure to relax/get away. We tried to go places close to the house, but they were closed for Labor Day. We headed to Asia nails for a sort of pedicure (10 minutes long and not much of a “pedicure”) but it worked out because we were in a hurry to head up to SLC. They asked us for a design and we thought it would be fitting to do the childhood cancer awareness ribbon (gold). When we told/showed them, they looked a little puzzled and asked why. I told them and they were pretty sweet, but didn’t think that it was possible. They had no gold writing and didn’t think that it would be perfectly even. My mom volunteered her toes to try it on and I wanted the same. It was more of the thought that mattered. A good reminder/symbol… even though the ribbon is white with a lit le silver…close enough. 
We left for SLC around 7:15 pm in hopes that she would sleep half the way. And she did more than that… she slept from the STG on ramp to to Treena’s front door. And man was she excited to sleep there… oh wait we didn’t sleep much. She played dress ups, ate café rio and pretend shopping with Treena. She was in heaven and didn’t want to go to sleep.

Let's just say that we didn't sleep much. She went to bed at 12:30, woke up at 1:30, 3:30 and 4:30 crying/screaming/whining for food. She was starving... the only problem was the fact that she couldn't eat because of her procedures. TORTURE!!! I thought the night would never end. She screamed about a pink penquin, pink cookie, cafe rio, water, didn't want my help, didn't want me under the blankets. I laid on the edge of the bed, freezing and whishing 6am to come faster. The second I pulled her out of bed, she asked me where we were going and then she said, "We are going to the doctor aren't we...?" Just about broke my heart. I hadn't gotten that fair in our plan. She can't be lied to and wants to be informed of everything that is happening. She kept saying that she didn't want to go to primary childrens. I tried to reassure her that it was going to be ok. I couldn't tell her that we weren't having a sleepover because I didn't know if we would be admitted.

Walking in was enough to start the tears/anxiety for Taleah. The clinic was ok, but she was unsure of everyone and everything that was happening. Accessing the port was traumatic, or should I say lifting up her shirt to look at the port was traumatic. Actually putting the needle in was much easier than actually lifting her shirt up. She ended up loving the nurse, Lindsey. She was terrified down in the RTU. She did great having the vincristine.. and actually lifted her shirt (only for Lindsey) to give her special button the special drink (chemo). Our only setback... she was STARVING. She was requesting a roll. However, she couldn't eat until after the RTU (lumbara puncture w/ chemo in the CSF). That's all she could think about.
I was afraid she was going to wake up grumpy, but she woke up kind of loopy and saying funny things. She said, "What the heck, look at my bandaid light lady (the nurse)." She got a kick out of that. When she woke up from the anesthesia, the 1st thing she wanted was a roll. Grammy had 4 options to choose from, but she only wanted Grammy's rolls. Too bad we didn't have those on hand.

She did love the turkey sandwhich and downed the entire thing. It was super tall and she didn't want us to cut it in half. It was seriously hilarious. My mom and I both started laughing so hard. It felt good to laugh. Had to get a pic w/ my phone.

Food never tasted so good!!

Her counts/bloodwork ended up being decent. Decent enough that we didn't need a blood transfusion or platelets. We had been informed when we left the hospital as in inpt to expect both when we came back... YAY. Good thing they were wrong. :) Must be those prayers.

The ride home wasn't great. She was kind of nauseous and had a slight headache. We made it though and she is glad to be back.

The 1st clinic/RTU visit is over. Glad to have that behind us. I feel ok about it. I know they will not always have "good news", but it was nice to hear it for a minute.

It was sad to leave her for the LP, it was sad to hold her down for the port access, it was sad to listen to her ask me tons of questions and then hate the honest answers I gave her. Distractions DID NOT work. They never do for her. She wants to watch it all and take it all in. Smart girl!

Had another real moment... when she was laying on my stomach and then sat up.. there were about 12 hairs on me. She never sheds. Maybe it was coincidence, probably not. Her hair is starting to go. Gotta think of a way to explain that to this girl.

So grateful for the family we have to help us out (and all the friends and family too). Makes it doable... still sucks... but at least it's doable. I guess today I am feeling a little better about things. 18 more days of steroids, 18 more sleepless nights (actually probably many more to come), 18 more days until this 1st month is over.

She is a trooper. Seriously. Love ya sis!


  1. Hooray for good news! I'm glad it went well. And even though those steroids make her so hungry I'm glad she's eating so well. What a sweetie. Another day has come and gone. Yay!

  2. haha i love the pictures of her eating.. that little story made me smile then bawled again hah but i love you -things will pass :)

  3. So glade to hear she didn't have to be admitted. Thinking about you all day. I know it is hard to tell the truth to a 2 year old but it you are doing a great job!

  4. Your roll story brought back memories. Chase woke up multiple times asking for a roll. And same thing, it had to be grandma's rolls. So we learned to take a bag is grandma's rolls when we headed up to salt lake. So glad you made it home safe. We are counting down the days with you. Chase was on steroids all weekend and every time I would get frustrated and impatient with him I would think of you and little taleah. We only had five days of steroids this week and I was counting down. You can do it. You are doing amazing!!! She is such a smart little girl and will learn more about the medical world than most peopled in their whole lifetime.

  5. Paige and I love reading the blog. It is humbling. Porter loves Scott. We loved seeing your parents and sisters at the park recently. You have the greatest family on earth. We love you and your family! Thinking of you all. Love, Kris Harris & family

  6. I am so glad you got some good news! And that you guys got to laugh and have fun for a minute! You are such an inspiration to me!! We love you guys so much and think about you all the time. I'm sorry about her hair :( I don't know how I would go about telling my kid. But you are strong, and I know you will figure out the best way to tell her.

  7. How hard it must be for you to have a hungry baby and not be able to feed her. That broke my heart. I love reading your faithful posts. Keep your chin up, lots of prayers coming your way.

  8. Hurray for good news! Take it when you get it and hang on to it because when it's all over, the funny moments and good news will get your through the harder moments and bad news. I had a thought as far as helping with the hair loss. Polly Pockets makes dolls that you can actually change their hair. I don't know how she is with little pieces, but you could always take the REALLY small things out and just leave her with the dolls and clothes; but maybe you could get her a set and wrap it up like a present and then say something like "you know how you can change these cute dolls hair? Soon your cute head will be like this ones (without hair) but you'll be able to choose any type of style you want or hat you want. How would you feel about that?" Then explain how the drink the special button is taking is going to make her hair go to a special place; but as soon as it's done being so thirsty, it will come back. In the mean time, you get to change your beautiful hair whenever you want. --Obviously the conversation will have to go however you see fit, but thought the dolls would be a great visual (and something fun) for her. I know however you end up going about it. Another thought would be to throw a hat party (like a tea party, but have guests bring hats or bandanas for her) to make it a fun experience. You could also a hat fashion show and have the guests be the fashion models and Taleah the judge. HTH {{{HUGS}}}

  9. You don't know me but your story is truly inspiring. I found your blog through Alisa Ence's and apparently our husbands played football together (Chase Norton). We pray for you and your precious baby girl every night. We live in Salt Lake so if you ever need someone to help out, watch your son anything please please let us know. Stay strong!