Saturday, June 25, 2011

Random Things

 I have so many pictures I need to post and write about, so I will hopefully do that soon. For now, here is a little update.

Jaylie has done really well the last couple of days and has had a lot of energy. We are all surprised at how much she has. She is not napping and is waking up pretty early everyday. I am surprised she is not wiped out. My brother and sister in law got into town on Thursday so we have been hanging out at my parents house with them a lot. We have been swimming a lot and the girls have been loving it. Jaylie loves swimming and I am so glad she is able to do it and feels good enough to. If she still had her hair you would never know she had cancer and was going through radiation right now. She jumps in, swims, bounces around, floats, plays Ariel games in the water, and does everything a normal 5 year old would. It is still so crazy that my little girl has brain cancer. It is crazy seeing her without hair every morning when I wake up. It is the first thing I think about when I wake up and is the last thing I think about before going to bed. It is hard to ever get a break from it. I can't even get through a movie without thinking about it. It is constant. It is hard. I am just so grateful that she is doing so well so far. Everyday will get worse, but it is great that she is doing as well as she is at this point. She is really emotional lately, way more than ever before. She cries a lot at little things that bug her or hurt her feelings. She is just a lot more sensitive. Her body is more sensitive too. All her senses seem to be heightened. Her sense of smell is crazy good, bad smells really bother her. Things hurt her a lot easier too. Before if she bumped into something she would be fine, but now it seems to hurt her real bad. I don't blame her for being more emotional, I am way more emotional than I've ever been before too. And she is actually taking it all a lot better than I would have ever thought.

Jaylie really likes her hair. She was watching my sister in law and my little sister get ready and fix their hair the other day. They noticed her watching them and they told me she looked at them for a while and then looked at herself in the mirror and then said that she loved having no hair and wants to keep it like that forever (they thought she would be sad about it). I can't believe her attitude, it really is amazing! This little girl is something else, she wows us everyday. She is a little miracle already.

She is on the appetite stimulants and is doing a much better job eating. She will actually ask for food now! I had to beg her to eat before and now she will actually tell me she is hungry and she wants food. Its crazy! I am loving it, hopefully we can get her to gain some weight in the next 2 months before chemo.

I didn't post on Father's Day. We had a really great day. Jaylie and Breklyn had lots of fun surprising Kip with cards, cupcakes, dinner, and more cards.  They were so excited to make it special for him. Jaylie said "I wish everyday could be Father's Day and Mother's Day. I wish Mother's Day was every Saturday and Father's Day was every Sunday".  So sweet! Later that day she told Kip, "I wish I had radiation on Sunday so staying really still during my radiation could be my present to you for Father's Day".  Kip and I looked at each other and almost started crying. She has been the sweetest little girl lately.

A couple weeks ago, just before Jaylie's appetitie went way down, she said something really cute at her chemo appointment.  We were walking out and she asked me if I had ever had cancer so I told her no and that she got it because she is special. She then said "I'm glad I got it because I get to do all this fun stuff and come here and get to eat this" (she pointed to her Amy's ice cream).  She was smiling. I am glad she is happy about it. The other day at radiation, my mom said to Jaylie, "Ok, now you get to rest with your chin up and then after radiation..." Jaylie then butted in and said "I can rest with my chin down!" My mom was going to say we will go eat. We thought that was pretty cute. The thing she hates the worst about radiation is having to keep her chin up so far. That is the thing she complains about the most. She has to tip her head way up and it is uncomfortable for her. She does such a good job with it though and she realizes she has to so the radiation can get in the right spots.

We were playing in the play room the other day and Breklyn and Jaylie were playing doctor. Breklyn started talking about Jaylie's radiation mask and I told her that when Jaylie was through with the radiation she gets to keep the tweety mask and told her that she could have the other one (we have a white one here at the house). She said yea, but I want to wear the tweety mask and take a rest on the table like Jaylie does.  She wants to be just like Jaylie. I took her to the doctor yesterday and she has a double ear infection and has to be on antibiotics. She gets sooo excited when she gets to take her medicine at the same time Jaylie does. She would ask for medicine once in a while when Jaylie had to take hers. She is glad to have medicine like sissy now. She is so funny and sure does love Jaylie.

Jaylie had an audiogram a couple weeks ago. One side effect of chemo is hearing loss, so they monitor it closely throughout all these treatments.  This was her first appointment and she did great. She was really cute and talkative with the lady who did it. She has excellent hearing right now. Afterwards, the lady told me that Jaylie has a great spirit, a really great spirit and that she is just full of life :) That made me happy. Jaylie has gotten so much better with adults and strangers because of all of this. There is a huge difference in how she was in the hospital before and after surgery and how she is now. Huge difference. I remember in the hospital shortly after we found out her diagnosis, our oncologist said most of the kids open up pretty quickly and are not shy with them (the nurses and doctors) anymore. Everytime a nurse or doctor would come into her hospital room, she would turn away and not want them in the room. It is so different now. She has come a long way.

Sorry it was all so random. I wanted to write about these things so I wouldn't forget them. This is my journal through all of this, I am not keeping a separate one, it would be too much work. It is good for me to write and I think it will good to have for the future, for us and for Jaylie.  I follow a couple caring bridge websites of other girls who were diagnosed with this same exact type of brain cancer when they were 5 too. One has been cancer free for 3 years now which is great, but it is so discouraging to read about the long term side effects from the radiation and to read about what the doctors say about her future and quality of life. I almost don't want to read it because it is too hard, too hard to think about the future. The other little girl's cancer came back and when it comes back with this type of cancer, it is not good. The doctors say it is fatal if it comes back. It breaks my heart to read what they are going through. They are doing treatments and drugs that have never been done in a child of her age, to try and fight it.  I feel for both of them and realize that we will be in one of those positions down the road. I feel so badly for other moms and families who have to go through something like this. It is a club that no one wants to belong to.

1 comment:

  1. I don't know you guys, but I've heard so much about you! (We're new to the Carriage Hills Ward). Thank you so much for sharing this journey with us. You guys are all in our prayers. :-)

    p.s. A friend of mine... her daughter (age 4, at the time) was diagnosed with a brain tumor in March 2009. She's doing SO great now. Of course, she's had her ups and downs... and some issues these last few months, but she's recovering at home and in physical therapy. :-)