Friday, March 30, 2012

Recap of the last 10 days- IM2

This was a few days after treatment in SLC. She was sick and throwing up, but still able to smile and communicate a little bit. I had no idea how miserable it was going to be.

Slade Man always representing his sissy.. Together for Taleah.
We even had a day of playing outside for a short while. She felt good enough with the sores on her lips to enjoy a little fresh air.

Then, I got sick and we all heard me whine about that. It was terrible, but she was throwing up too so we layed around together.The sores got worse and she stopped eating and drinking. She was miserable and I wanted to prevent dehydration so we took her in for some fluids. It took forever and she was miserable, but we were able to get the magic mouthwash and some pain meds. Oh and she won't swish the mouthwash.. only rub it on her lips.
Her only motivation was some cousin time outside at the Stevenson's. She LOVED it and I loved it. She had a little tiny smile and enjoyed focusing on something other than her sores.

Slade was in heaven too. He wasn't cooped up in our house laying around. He loves his cousins.

But then she was miserable again and again. I already wrote about it and I know it could have been worse, but in the moment it seemed awful.She woke up every morning crying/in pain. On Monday (1 week after treatment), she woke up a little happier and requested pancakes. I couldn't wait to make them because she hadn't eaten for days. I was just praying she would keep them down because there hadn't been a day without throwing up.

And then the excitement... the girls having a picnick for lunch. She drank some smoothie and ate a fwe bites of soup, but then it was obvious she wasn't feeling well at all. Right in the middle of our barbie play... came the throwing up. I was so bummed because I thought this was it. Side note.. she is so good at throwing up. Sounds terrible right?! But seriously, she knows when it is coming so we can always make it to a bowl, sink or toilet... she rarely misses.... the toilet is her least favorite place. Kind of princess when it comes to throwing up.

Scott and I ended up taking her to Marsden that day because PCMC told me I should. He checked her out and looked at her sores. That was the first time we saw the ones in her mouth. OH MAN! There was a huge cluster of them under her tongue. And then some on the sides of her mouth. Talk about painful. They say if they are visible on the lip and in their mouths, then they are most likely in the esoph and GI tract.

I knew going to work was going to be a challenge on Tuesday. I bribed her with watching the mini team that night if she could behave with Grammy. She did a pretty good job (it was rough for a while with my mom and it broke my heart). She got to go and she loved sitting right in front with the coaches and helping out.

She hadn't thrown up for 24 hours and she requested Cafe Rio for dinner and her wish was granted. Anything to get her to eat. Then, we headed to Target so she could pick out a present for Chase (another cancer cutie). She had a blast and wanted to buy lots of candy... again anything to get some calories in that girl. Oh and the smile did it for me.

She has lost 3 pounds. That is a lot for a girl that weighed 32 lbs to start. Everyone notices how thin she is. I want those chubby cheeks and thighs back.

We spent a little time at the park and then lunch w/ grammy and daddy at PF (her favorite place). We had a few meltdowns because she is not feeling 100%. She still cries when eating certain things that scrape the sores in her mouth.

She had labs drawn and we waited for the final verdict.

WBC 2.6

ANC 1400

HCt 29

Plts 86 (75 is the min # for chemo)

Looked like chemo it was. I was SO nervous about the dosage. Luckily, they decided to keep it the same as last time. I was actually hoping (but not hoping) for a lower dose so she didn't have to suffer again. It's bittersweet. Let's just say I didn't sleep the night before. Well, for a few reasons.

I had to work while she was getting chemo (in the same hospital), my mom ended up getting sick and she was my babysitter, and Slade would be coming to chemo. Sandee ended up helping out with Slade and picking up the Glutamine powder (something I read that could help prevent mouthsores) she also stayed at the hospital to help during fluids before chemo started. Scott was able to spend some time at the hospital and my patients were quick so I only worked for 2 hours. The chemo took a little longer than usual and I was on edge. I am pretty sure everyone could tell. I still kind of am... waiting for the unknown.

I know that it does NO good to sit and wait for something bad to happen. I should just enjoy what we have and then deal with whatever is thrown our way. Obviously, I just don't work that way. But I am trying. She was able to drink and eat that day. I tried to stay ahead on her meds and I think it has helped. So far, no sores on her lips (which showed up the day after last time) I am PRAYING that they won't appear this time and we can be done with this phase and move on. It was the LAST dose in the phase and then maintenance is next!!! YAY!
That brings on an entire different anxiety. Waiting for the results of which arm of the study she is randomized to.... ahhh. Again, out of my hands and all we can do is wait.

Patience... a lesson I am still working on. Time will tell. Lots of prayers/fasting coming so that we can make the right decision. (we can opt to pull out of the study if we feel is not a good fit for her) Talk about pressure.

Heavenly Father has a plan and I know if we turn to Him and trust in Him it will all be ok.


  1. You are so good about keeping this blog updated, and someday you are all going to be so grateful that you did. She is adorable, even though she feels so sick! I'm sorry this round has been tougher than normal. We are praying for a better week for your family.

  2. Tosha, Do you realize how many people are taking this journey with you through this blog and are inspired by your faith, patience and love for your little girl? Thank you for sharing this bumpy road with us. Taleah is a beautiful little girl, and that spunk and stubbourness that she so often displays (as you've shared with us) may just be the thing that gets her through this! She sounds like a little girl that knows what she wants and knows what she expects and will not settle for less. What a gift to have a personality like this when dealing with something so hard. She sounds like she will not let it beat her. Our prayers continue to be with your family.

  3. prayers your way hoping everything gets better in the next phase! oh and when you have a second i want to hear more about the

    -Waiting for the results of which arm of the study she is randomized to.... & opt to pull out of the study if we feel is not a good fit for her

    I dont think i have heard you talk about that on the blog and what all that entails?