Saturday, July 28, 2012

Steroid Week and the Effects

 Steroids are seriously evil. I know they do great things but holy cow! I didn't get any pics during the first of the week because she didn't feel well. She spent a day at Grammy's house because I had to work and she told everyone with tears in her eyes, "Don't talk to me because I had chemo yesterday."
She doesn't like to be spoken to or looked at when she is on steroids. I must say that the days she was actually taking the pills were much less angry and more emotional this time.
It was the days that followed her last does that were terrible.
We headed to Lake Powell for a family reunion. I was nervous because she would take her last does out there, but we went anyways (we left Slade with the Stevensons for the 1st day).
 She was in so much pain. The pain meds didn't even really help for one of the days. She complained that her hips hurt SO bad. She just laid on me and cried 75% of the time. However, she didn't want to leave. Treena showed up a few days late and totally saved the day. Taleah only wanted her or myself and they played for most of the day.

The ride home was great and so squishy! Taleah was in heaven though and feeling a lot better at this point. Just in time to go home.

I love that she comforts him. I feel like going through this journey will make her much more empathetic with people and their struggles. Sweet girl.

She was much better in time for dance camp. She was more than thrilled and would not leave me along every morning until it was time to go. I am so glad she was able to go. It's feeling "cancer normal" again.

She is full of personality and a little fiesty at this point. I am trying my best to discipline and not let her get away with things because she has cancer. I feel like these are important years for setting some boundaries in a childs' life. She is a sweetheart and I still consider her my hero.

Before our PCMC trip

This is supposed to go before the PCMC post. Oh well.

June was a good month. We had a lot of family time and keeping busy and out of the heat.

 People are constantly asking if Slade is a girl and Taleah is a boy. Obviously because of the hair. I feel like her hair is growing pretty fast and I love it right now. You can see the curls and I am pretty sure it will grow back just like it was. Maybe a little more blonde.

When she is not on steroids they play pretty well together. She is clearly the boss of him and loves telling him what to do.
We are so grateful for good months. Hoping for many many more to come.

Maintenance- 2nd Cycle

I was anxious to get this day/week started. We woke up early to be at the airport by 5:30am. I was hoping we would make it to PCMC by 8 and praying that Tavia would be at the airport on time. She was early and we made it with 15 min to spare. The moment we pulled up proved the anxiety that Taleah was experiencing. She was doing her best to be brave and happy but I could tell it was getting to her.

Tavia was a good distraction, but Taleah would hardly crack a smile for anyone. Even the people she loves the most there.

She didn't cry getting her port accessed. They had a hard time getting blood back. I was so nervous! It is different now that she only gets labs drawn once a month, but I automatically thought the worst. A little heparin and we were good.

Her counts came back perfect. Her weight has gone up a little so they barely increased her daily chemo pill. I was thrilled that her body is doing what it's supposed to do and she is handling like a champ so far.

She knew the "smiley room" was coming and it was really getting at her. We had a new distractoin... making pink and purple snow. It kept her occupied until they were giving her the sedation meds. She wanted to know when they were going to give them to her so she could be ready for the dizzy part.

We tried having her close her eyes this time in hopes that it would minimize the dizziness. Poor girl would not relax during the LP. They had to give her a little extra. She is usually out enough that she doesn't even speak. It broke my heart when she grabbed my arm as they were putting the needle in her back and said, "momma!" I know she never remembers the actual poke, but that brought tears to my eyes. Tavia was crying too. It was so sad.

She usually sleeps after when she is receiving chemo. It always makes her nauseous as well. It seems like she throws up sooner and sooner now.

She loves making a wish but didn't have the energy to do it like she usually does this time.

I was glad to have that part done and now it's the steroids. Blah!
She is so tough and brave and truly my hero.

Sunday, July 8, 2012

Broken Heart

I must say that I have shed some tears tonight because of cancer and the way it has changed my baby girl. We have been talking about the trip to PCMC tomorrow for a week or so. She is fully aware of the fact that she has to be sedated in the "smiley room" and she hates it. She says it makes her dizzy and she doesn't like it. I can tell that is stressing her out. She keeps mentioning it today and I try and brush it off, talk to her about it and I can't tell what helps the most. I tried getting her excited about the airplane (still hoping that it's going to work out ok). As I was putting her to bed, she was on the verge of tears and asking me a million questions about clinic. She likes everything else about it. She usually goes to sleep when I leave the room, but tonight I could hear her calling my name. I walked in and asked what she needed and she replied with tears in her eyes and a quivering lip," Will you lay by me in the smiley room?" I could hardly hold back the tears and just held her and told her of course I would. I always do. That just broke my heart. I talked to her and held her and then left the room. I heard her crying about 5 minutes later and apparently it's all she can think about. So, Scott is sleeping with her tonight. My 3 year old is crying and stressing about being sedated for her lumbar puncture tomorrow. It is so not right. I know it could be so much worse, but it still sucks. I figured this would be a little tougher since we are only doing it every 3 months. Of course, I am stressing too. The chemo, the way she feels, the steroids. I am SO not looking forward to it and I guess you could say I am a little anxious. Surprise. I just hope she gets a good night sleep and we can make it through this upcoming week. Cancer sucks.