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.

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.

June is flying by.... 1st cycle of Maintenance

Again, it's probably a good thing that the month is flying by without much craziness. We have been keeping busy with the regular things of life, but luckily nothing too bad.

These two are playing and fighting so well. It makes my life easier and harder. Love it though.

Taleah's "boyfriend" moved away to college. She was excied to give him so gifts and candybar card. She really thinks very highly of him and smiles when she talks about him. I am not even kidding.

I feel like they have been "baby-sat" a lot due to work and a few other things. I always feel guilty but it's nice that they are always loved and cared for.

She had her monthly check up right before Camp Hobe and everything looked great. Her numbers weren't too high, but probably high enough that they will increase her oral chemo at the next visit. I am ok with that, but the Thur night Methotrexate pills are rough sometimes. More often than not, she wakes up on Fri mornings with a headache and no desire to even hold her eyes open. I hate it. I am guessing it is because of that chemo because it usually is gone by Fri evening. It still breaks my heart and is always a slap in the face that cancer still rules our world. I hate that it does!

Luckily, it only lasted until that night. She was back to herself. Love it.

Her hair is growing pretty fast. My favorite is when people comment on the fact that I buzzed her hair for the summer. I am pretty sure they just want to know why her hair isn't long. Cracks me up though. I guess asking if she has cancer is probably a lot harder to do.

We go up to start the 2nd cycle in July. I deicded to try the flying route this time. It will cut out an entire day and I am hoping it will be less draining. I will spend less time away from Slade and we won't have to endure the dreaded ride home. I tried to figure out these "angel miles" I had been hearing about. Another cancer mom said that people donate their sky miles to people traveling to PCMC for treatments. I don't know if that is true and I tried to contact Skywest, but didn't really get an answer. I just booked the flight and then we can decide if we think it is worth the extra money. Hoping it is better!

Famliy time means so much more. Watching them play and interact melts my heart. I mean that from the bottom of my heart. I know every parent loves their kids and thinks they are great, but there are moments when I realize that she is lucky to be alive. We are lucky to live in a day in age where medicine can cure this beast. I have those tender moments occasionally that make tears in my eyes. And it always seems to be in the most inconvenient places.

I am hoping that she will continue to do well. I know we haven't been as good at the strict hygiene and we need to. It's just not as easy/obvious when she isn't bald and sick. We do appreciate the people that are thoughtful of her and her immune system. It means a lot.

I think we are doing pretty well and constantly overwhelmed with the kind people in our lives.

I know I struggle sometimes with this "new life". It's hard to describe, but I think overall we are handling. I probably just bottle things up so I break down occasionally. Normal right?! I am sure we will eventually "talk" with people who are really good at this stuff. Can't make things worse I hope.

I know everyone has trials and this one just happens to be ours. Honestly, I pull strength from others who conquer theirs. We know some pretty amazing people. Thanks again for the wonderful support and examples we have!!

Camp Hobe

Taleah was so excited to go to Camp Hobe. (she kept calling it "camp obi-one-kanobi")She wasn't 4 quite yet, but they made an exception. I figured she would do great because she goes to gymnastics and cheer by herself. The Prince family was so nice to arrange everything for us to carpool with them, stay with them, ect. Sadly, Chase got a fever the day before and was unable  to come. I was a little panicked because I wasn't thrilled to drive by myself to Tooele, Utah. I debated trying to get buddy passes and then have my sister tag along. It turned out that my mom and sisters ended up coming for a girls trip/weekend (it was my mom's birthday). I was so grateful. We ended up arriving a little late and getting up early to get ready (less sleep than normal). She was thrilled.

We checked in, met up with some familiar faces and she met up with the "pink team" and took off.

She loves Daphne and looks up to her. Daphne was so sweet to take her hand and quide her on their way. It had been about 10 short minutes when the counselor came back with a crying Taleah. The first stop was music/dancing and I guess the drums were a little loud and it freaked her out. She wanted to leave and I told her I would stay. That kept her happy but she kept repeating that she didn't want to do the music again. (kind of shocked me because she LOVES music and dancing) I am guessing it was all a little overwhelming!

I wanted to be able to go to the park where all the moms were and meet some of them. The girls volunteered to stay with her.

I know she had a lot of fun. The swimming was a little cold because we are used to the HOT weather and warm water. She wouldn't let anyone leave her side. It was a long, fun day and I think she was exhausted by the end of the day. When we checked out they told her to rest up and they would see her the next day.... and then she cried and said she didn't want to go back. SAD! These people work so hard and donate their time. I know she was just tired and probably a little too young. I was sad because I knew she would have fun the next day and I took work off, drove 5 hours and she didn't want to go back!

I wasn't going to make her and traumatize her. So, we headed to SLC to have some fun. We stopped at PCMC to see Lexe who also has Leukemia (AML).

Lexe is one tough chick (her link is on my side bar). Taleah loved meeting her and "wishing" that they would kick Leukemias butt together.

City Creek was a hit. We enjoyed Cheesecake Factory and some shopping. A girl's dream right!?

The next day we figured we should do something fun for Taleah. We made a stop at Cowabunga Bay for a couple of hours. She LOVED it. We all thought it was great!

The drive home seemed long. She was extremely ornery by the end. Nothing a little dance party can't fix.

It was a great 2 day trip that we won't forget. I am glad she got to experience a day of Camp Hobe and we can't wait to go back next year!!