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.


  1. She is so cute and a trooper, holy cow! I'm glad her counts are staying up! You are always in our thoughts.

  2. I always love seeing all the pictures. She looks really good. Love the pic of Slade laying on her. Reminds me of some I have of Lydia & Drake at those ages. Brielle will mention an imaginary friend here and there if it makes you feel any better! Let us know sometime when her counts are good and we would love to come up for a visit - even if it is outside or with masks. Love you guys!

  3. so glad you are updating this blog! I love reading about your days! wish things were easier for all of you though!! love ya!

  4. I kno she is a lil young to write letters but maybe it would help you feel a tiny bit better about her being socially deprived and tons of fun for her to get mail... you could try pen pals.. send pics of eachother, lil treasures, color or draw pictures,and fun lil things to write eachother.. Blakli is way young but we would love to be a pen pal. Just a lil idea I thought could be cool.. lemme kno what u decide

  5. She's doing great! Really. And before you know it, she'll be doing all those things you described. A little over a year after her diagnosis I put Daph in a dance class. A year sounds like a long time, but for those first six months or more they just don't even feel like doing anything anyway. Now Daph's in dance, tumbling, and violin lessons. Along with preschool (last year we had to do home preschool because of where she was in treatment). It will happen sooner than you think. Promise.

  6. The pen pal idea is way cute:)My 3 1/2 yr old would love to color her pictures and send her stuff. Your little family is always in my thoughts and prayers.

  7. Think about you guys often! What a cute family you guys have!