Tuesday, June 26, 2012

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!!

Sunday, June 24, 2012

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!!

Sunday, June 10, 2012

Lake Powell- 1st cycle of maintenance

 Let's just say we were all very excited to get away and go to LAKE POWELL. We were sad to leave Slade but knew that it would be best without him. The drive down was great due to excitement and some major singing was happening.

We played, stayed up late, took naps, card games, tube rides, jet-skis, surfed and so much more. I think she loved the lack of schedule (that was hard for me).
Tavia was nice enough to take a nap with her one of the days. Luckily, it wasn't too hot and we were able to sleep inside on the beds.

It's pretty safe to say that she ruled the show when she could. She lead us all in cheer class, gymnastics, and dance parties. Yes, she was in charge and told us all what to do. We even received treats one of the nights if we were good listeners. I wish I would have videod it all.

I will not say which bum is which, but I couldn't resist a picture of these bubble bums. Seriously. Is it not the cutest?!

All of the extra friends were so good to her. They played with her and entertained her. She was in heaven.

One of her favorite things was driving the boat with Gramps. She thought she was SO big.

I am so glad we went, but I was so nervous because she had a cough prior to leaving. She had some medicine (additional) to take to try and help. It turned out fine but every scenario crossed my mind. What if she got a fever? What if I needed to access her port? Would I remember all of the right meds when we weren't sticking to our original routine? Yes, I may be a little paranoid. It worked out though and she had so much fun. Totally worth it!

Side note.... I informed Taleah that her friend Daphne was getting her port out. She replied, "That's so exciting! Does that mean she doesn't have Leukemia anymore?" Then a kind of sad look came across her face. I said, "Yes, she is done with treatment! Isn't that great?!" Taleah said, " Is it because she took her pills and did her chemo?" I nodded. Then she said, "When am I not going to be a cancer kid anymore?" That statement caught me off guard and I told her it would be a while but she would be done just like Daphne as long she continues to take her pills and do chemo. She seemed satisfied with that answer and said, "I can't wait to have Leukemia gone and not be a cancer cutie anymore."
I kept replaying that conversatoin in my head. Is she really only 3? Wow, she has learned so much. I am glad she does though and accepts that she has more to do before she is done.
 I was telling this story at Powell to some family and friends, but she added one more sentence to the end of the story. Right as everyone is saying ," Awww, that's sad and cute." Taleah says, "Poor me. Poor me. Poor me and my mom." Ha. Eating that right up. Loving the attention. Way too smart for her own good. Love her!
She has her monthly visit tomorrow (no chemo or steroids because of the study). We will find out what her numbers are and make sure she is doing ok. We are hoping for great everything because she will be attending Camp Hobe for the first time. We can't wait!