Tuesday, January 31, 2012

Tambi's Song

I am slightly computer challenged. I had to make a slide show of pictures with the song Tambi wrote for Taleah. I LOVE the song. It was written right after diagnosis. The words make me cry every time.

DI- Day 41

We had Nurse Jeanette come out to access her/start the first day of four days of the Ara-C (chemo). We did a CBC to check numbers. She has been energetic, sleeping the same amount, and not requesting "special juice". I was shocked when I read her numbers/results from the CBC. I called with concern because her hematocrit is 24 (which is close to what it was at diagnosis). She received 2 blood transfusions when it got that low. Her WBC is way low along with her ANC. I expected the ANC to be low, but I thought the Hct would take another week or so. I guess it means the chemo is doing it's job, but it is still scary. We initially thought we would check on Thursday and then set up the transfusion if needed. BUT.. the fellow doc seems to think if she is not showing symptoms... we should wait until next Monday to draw again and check. I don't know if they think it will come back up on it's own, but seems unlikely when she is getting chemo 4 times this week AND taking the chemo pill every day. If she starts showing symptoms (pale, tired, lethargic, red eyes, ect), then I will call. I guess we will just wait it out. That's what I do best... waiting it out... patience.... the unknown.

Yep, I am way good at it! No anxiety here!

Sunday, January 29, 2012

Pictures- 3 years old

I am planning on getting professional pictures taken, but we haven't had the time or been able to predict how she would be. Everyone tells us to get professional pics when these kiddos are bald because it won't last long. It's on the agenda. BUT just in case she doesn't feel well after we start the chemo again tomorrow.... we went outside and snapped a few with my camera. They are lame and cheesy... but also SO cute. She is a doll. Had to capture her many faces/poses.

**3 years old... way too big**

Happy Birthday Taleah- DI Day 40

Taleah is 3 years old!! Let me say that I was kind of emotional. It may sound crazy, but I feel so grateful that she is here with us. I mean... leukemia could have taken her life... and it didn't and she is still here. I feel so blessed to celebrate 3 great years. I was emotional a few times just thinking about her 3 short years of life so far and what she has endured.

She woke up so happy and I was so glad!! This week was unpredictable and I just didn't know what to expect. As a result, we had nothing planned for a party.

My neighbor came to the rescue. She kept offering to make a cake, get decorations, ect. I initially turned her down because I should be able to do it all, but I can't. So I accepted her help and WOW. The cake was unbelievable. She went above and beyond. What great people we are surrounded by. Amazing. I was speechless and may have shed a few tears. Thanks Gina!

This boy loved the celebrations just about as much as her. He went right along with everything and loved the people/attention.

The Morris family decorated our porch for Taleah. She adores their family and was SO excited to wake up to this.

The party... kind of last minute everything. Last minute food, decor, planning and decisions. We initially wanted only family. The Wakefields were coming to St. George and Taleah loves them (especially Brielle). We decided to let the whole family come (sounds bratty) because we would stay outside (less germs). Taleah was so happy to see them. We used to see them every couple weeks, but now we have seen them twice since diagnosis. The party turned out great with the help of our families. Oh and the weather was PERFECT!!! Heavenly Father was watching over us.

These boys haven't been able to play much. I can already tell they are going to be little buddies.

We also decided to invite the Morris and Legg families. I couldn't help but want Taleah to have so much fun and enjoy her birthday. There were only 6 kids... and everyone was pretty healthy... still hoping we made the right choice. Regardless, she had a blast.

Princess party... Slade had to be a part.... if only for a few minutes. He didn't seem to mind, but everyone else did.

The princesses.... so cute!! We played a few little games and danced and danced. They were adorable.

She gave them princess shoes and I think they like them. Watching them walk was even better!

We went to pizza factory that night (one of her favorite places). She was pretty happy. Her favorite was the #3 pizza. Wish I would have taken pictures, but my camera died at the party. The rest of the pics were from my phone.

We had a short and sweet cake and ice cream get together with some of the fam. She opened the rest of her presents and LOVED it.

One of her favorite presents. She has worn it 3 times in an 18 hr period. Oh man. I am afraid Scott has already lost his battle of her not being a cheerleader. Pretty cute though.

I am pretty sure she didn't want her birthday to end. She didn't fall asleep until 11:00pm. Scott and I laughed as she layed in bed and sang, "I'm sexy and I know it!" Yep, she knows that song. Good parents right?!

We feel so lucky to have this baby girl. She is such a sweetheart and so dang tough. I am hoping that she really is feeling that great and that the second half of this phase won't be too bad. Maybe Heavenly Father blessed us this week because it was her birthday.... if so.. at least we had a good week. I am hoping that it means next week will be similar (it's the same chemo again minus the cytoxan).

Happy Birthday Taleah.

We love you!!!!

DI- Day 37

Lukcily, the remainder of the week went much better. Wednesday was a little challenging, but she was acting like a different girl. She wasn't screaming in pain... she wasn't throwing up... and I was so glad.

We had to do the remainder of the chemo at home. My dad came over and made sure I was doing it right. Taleah was great. She played with my phone while I gave her the zofran and then the chemo. We put the zofran through her port over 3-5 min and the same time frame for the Ara-C (chemo). She was dreading the day I had to take the "window" (tegaderm) off and pull the needle out. She would rather me pull the needle out than take her window off.

She was still having hatred towards our house. I don't know what it is. When she is not feeling well, she wants NOTHING to do with our house. Maybe it's all the people/distractions at the grandparents houses.

She always has "cheer practice" (pretend) at our house. We decided to take them to the new RCC gym and have "practice". They had a blast together. Their "focus" wasn't quite there, but they had fun and that's all that matters.

I am so glad that she is feeling/acting better. I hope it stays that way so we can have a fun birthday. I have NOTHING prepared because we had no idea what this week would bring.

She is a trooper just like I always say. She is SO excited for her birthday. She keeps asking me if today is her birthday. She is more excited for this than she was for Christmas. Pretty cute.

Oh and she is embracing her bald head. She loves it. I love it. To be honest, before diagnosis... I thought the "cancer kids" were cute with their bald heads. I thought they were precious, but part of you thinks... hmm they look a little different with no hair. It's just not the norm. Still totally cute, but different. After diagnosis, I thought other kids were pretty cute and it meant a lot more to me, but it still caught me off gaurd at times. Moms would always tell me that I would love it and miss it when her bald head was gone (and I wasn't sure if they knew me well enough because I didn't think that would be the case). Boy was I wrong. I love it. It took a few days to get used to, but I love holding her and rubbing that bald head. I love kissing that bald head. I think she is gorgeous and portrays a special spirit.. a fighter. I think it displays a degree of maturity and a brave soul. I WILL miss this bald head. Good thing I have a few more months of it!!

Tuesday, January 24, 2012

Delayed Intensification- Day 34

Once we finally got rid of the steroids craziness, she slowly became the girl we have always known. Minus the headaches, minor complaints and meltdowns. It was such an improvement from the weeks before. We LOVED seeing her little personality. She isn't quite as active as normal, but I am sure that is expected.

She is still doing great with the new haircut. Hasn't complained at all. She loves that she matches her daddy and that she doesn't have to wash, comb or even bother doing it.

These two are hilarious. Sadly, when she isn't feeling well she wants NOTHING to do with him. She wants him out of her sight. I am guessing because he is loud and all over the place. He just wants to be by her and she wants none of it (only when she doesn't feel well).

She has been playing a lot of pretend. She has a few imaginary friends. I am not sure if that is normal or it's just because she can't really have any friends. I am hoping she is not being socially deprived... well I know she is but hopefully it's not hindering her social growth. It always breaks my heart when people are talking about playdates, dance class, gymnastics, ect. She wants to do that stuff so bad but she can't. I hate it! She wants to be on the little mini cheer team so bad. I wish she could do it... she would LOVE it.

Just had to add that this guy is a trooper. Love him. He just loves her no matter what. He is such a good little brother.

I didn't know if she was needing a transfusion (which can be common at this point) so I had them come do a CBC. It was nice to find out that her numbers were good. Good enough to go places and have a good time. We made the most of it. Enjoyed some outdoor weather with Chloe and definitely some dancing.

We went to Pizza Factory (which ended up being a nightmare due to her meltdowns). We went to the basketball game (with a mask).We went with Tavia to get her hair and make up done for senior ball. She was in heaven!! It's all she could talk about. She is a girly girl!!!

We made the drive to Salt Lake. I was dreading it, but she did great on the way up. I think because she knew she could stay at Treena's. And they never disappoint. They played dress ups, went "shopping", played senior ball, danced and partied!! She LOVED it.

Getting her to wind down was a trick. It took a while. She wanted to take some pics/funny faces. We had our "sleepover" and she was so glad. I secretly love sleeping by her, even though I don't let her do it at home (and I don't sleep).

Luckily, she woke up pretty happy. We usually get up at 6:45 and leave by 7:15. We were a little late this time, but it all worked out. She sang our "Salt Lake" songs on the way up.

She weighed, measured, and took vitals all by herself (this is huge). I was one proud mama.

She had to fast for this visit. She was not happy when some different nurses came in to access her port. She finally got to the point when she didn't want anyone else to come in while we waited for sedation. We had to wait for her CBC results and then they informed us that her glucose was really low so we had to infuse some sugar water before we could start. Luckily we had nurse Lindsey to help with sedation. Taleah LOVES her. It seriously made all the difference in the world. It was 100 times smoother. She did much better.

She always wants me to lay by her on the stretcher as she is coming out of sedation. I love that part.

The second half of this phase consists of...

- Itrathecal methotrexate

- Cytoxan (the only dose for the course of treatment...a big one)

- Ara-C (4 days on, 3 days off and then repeated the 2nd week)

- Chemo Pill (thioguanine) for the first 14 days

... then it will be 2 weeks off to recover which usually requires transfusions.

Her counts were...

ANC 900

WBC 2.9

RBC 4.02

Hct 32.9

They were all pretty good for a "cancer patient".

The ride home was rough. The night was semi-rough as well. I had to work the following day (today) so my mom and dad had the kids. She was miserable, sad and had many meltdowns. She also had a big throwing up issue in the morning. I felt terrible being gone and leaving them to it. They also had to watch/administer chemo with Nurse Jeanette. It's hard to be away, but maybe it's a good break at the same time. I am trying to stay on top of the medicine in hopes that she will feel ok. We will resort to IV zofran if she continues to puke and not keep things down.

I am doing pretty good. I think it secretly affects Scott and I more than we understand. Socially, I don't feel quite with it. It really is a struggle sometimes. I am pretty sure that is common with most cancer families. It changes you. Good and bad. We will get through it. Long road ahead. Praying that the next few weeks will be ok.

She is one tough chick.