Wednesday, December 28, 2011

Christmas and the week before

 Jaylie is feeling better now but had a rough week last week. Luckily she didn't get fever and we were able to have Christmas at home. It was wonderful! All of her 5 chemo treatments have knocked her counts down to nothing but this time it has effected her the worst it seems. She had been hurting quite a bit, mostly in her legs and mouth from the mouth sores. She was up at night a lot last week and the only thing that I have found that helps her is to take a bath. If she doesn't get a bath she will just keep crying, but the baths help calm her down and help with her pain. We had an appointment on Tuesday because we knew her counts would be down so she would probably need transfusions.  Jaylie was not feeling too good that day. It is so sad seeing her feel sick and tired. She gets to where she doesn't talk to anyone and just lays there or sits there. Her ANC was zero so she had no immune system and her blood counts were all low last week. She got a platelets transfusion on Tuesday. They had clowns at the clinic though that helped cheer her up! She was actually laughing! They were really good and had little gifts they gave to the kids, it was great.
 We had an appointment to go back on Friday to get a blood transfusion, hoping it would carry her through the Christmas weekend, but she was just not doing well and having really rough nights so I took her in on Thursday. She was a little dehydrated so they gave her fluids and she also got a blood transfusion.
Jennifer, the girl who gave Jaylie the Elmo balloon was at the clinic and Jaylie and her have become fast friends. She is the sweetest most giving little 10 year old I know. Jaylie saw her and sat by her and they talked.  Jennifer had a jewelry box that you decorate with stickers and sparkles and stuff that she was working on and Jaylie loves those things so she asked if she could help her.  They were so cute  working on it together:) then they both started playing their ds's and she borrowed a game from Jaylie bc she has tons from Robins family and Robin and CJ. They talked a little and Jennifer was so sweet to Jaylie helping her with her DS and then helping her choose lil presents that they were giving out at the clinic. A patient brought a big box of stockings and toys and everyone there got one and got to choose a couple toys to go in them, so neat. I am blown away every time I go there with how awesome people are about helping out and donating things for all the cancer patients. I know from experience that it really makes their days. There was another organization there that brought a bunch of toys and put them under the tree for the kids to take one and also had a bunch of stuffed animals. So Jaylie got a stuffed animal and a toy from the tree and was able to get some for Crew and Brek too. Jaylie always asks if she can get her sibblings things too.  I told the lady she asked that it was ok, she didn't need to get some for them, because I always feel bad, and she said that it was ok, it's for patients and sibblings. So neat! Jaylie was excited! I can't wait to come up with ideas and give back to this clinic and the hospital and all the kids with cancer. I have some ideas and am thinking of others, so probably soon you will hear about them. I am so ready for Jaylie to be done with her treatments! One more round! Yay! Anyways, back to Jennifer, when it was time for her to leave she gave her jewelry box they were working on together to Jaylie! This girl amazes me! Then Jaylie wanted to give her something but didn't really have anything so she gave her a hello kitty sticker she had in her backpack. It was sweet. We have gotten lots of laughs and giggles out of her today even though she has been feeling horrible. She's amazing!
Anyways, it was a long day at the cancer clinic, but we went home and Jaylie started feeling a little bit better. Friday she felt pretty good and on Christmas Eve and Christmas Day she felt good, it was a huge blessing. We went to my parents house on both of those days and hung out with them and my sibblings that were there. It was great. Christmas day was amazing at our house. The kids were all so excited and they were just as cute as ever, thanking us after every gift and giving us lots of hugs and telling us Merry Christmas a lot! I couldn't ask for better kids. Jaylie kept saying "We are really spoiled!" They got presents from Santa, us, both sets of grandparents and some cousins. We told them that this year was special and they got a lot but not to expect that every year. I just love how thankful they were, it was so sweet. Crew loved the wrapping paper pile and the boxes the best, he played with them a lot more than any of his toys and he got some pretty cool toys :) It was a perfect day. We went to my parents house later that day and did Christmas dinner which was wonderful and then my Dad had a neat evening planned. We all dressed up and reinacted the nativity scene, read scriptures and sang songs. Then whoever wanted to bore their testimonies of the Savior. It was a perfect night and just what we needed. She has been feeling better and better. She has been a bit tired this week and won't eat. We are getting worried because she is not eating and is losing weight. It would be sad to have to do the feeding tube for the last round. Hopefully she will start eating soon. She is scheduled to go in for her last round of chemo next Thursday, so only about a week away. Its crazy how fast these 28 day cycles seem to go. We go in tomorrow to see how her counts are. Hopefully they will all be high enough to start next week. She will have another audiogram next week too, so please be praying that her hearing won't be effected.  Please continue to pray that the cancer will never come back and that she will have the least amount of long term side effects as possible. We appreciate all your prayers and know that they work, we feel them everyday. Hope everyone had a wonderful Christmas and has a Happy New Years!!


Saturday, December 24, 2011

Merry Christmas!!

We are home and Jaylie is feeling good. We are so blessed!  We hope everyone has a very Merry Christmas!

Friday, December 23, 2011

Hospital Pictures

Here are some pictures from her 5th chemo round.
Doing crafts, her favorite thing!
Boone, the pet therapy dog

Santa was there. It was so neat!
Our friends that came up from San Antonio, it was so fun seeing them.
Jaylie looking at the big table of presents. It was amazing.

Some pics of the Harley guys and girls. We and I'm sure all the other parents of the children there that day were so thankful for them.
Making reindeer ornament and cookies

Posing in front of her new bike and presents! I still can't believe she got a bike! This pig she is holding is her new favorite stuffed animal. She goes everywhere with Jaylie now. I am so glad she has stuffed animals she likes, I really feel like they have helped her so much through all of this.
Jaylie loves babies! She had fun with Rock, who came to visit.
This was one of her presents. It was a rock star kit :)
Listening to music on my phone eating hummus and pita bread. One of her favorite foods now.
Not feeling too good, when she doesn't feel good she likes to watch a show or movie and be left alone.
This is the Elmo balloon that the 10 year old girl, Jennifer, gave to Jaylie. She is the nicest little girl. She was diagnosed with Ewing Sarcoma and is doing chemotherapy now like Jaylie. Jaylie wanted to pass the balloon on when it was time for us to go home, so we gave it to a little boy Crew's age who has leukemia. He is so sweet and little and has blonde hair like Crew. It kills me to see him in there getting chemo and feeling yuck. I hate that anyone has to go through it.
Some close ups on Jaylie's scar. I hadn't taken any since it was still healing and she  had scabs on it. It has healed nicely I think.
Close up of her eye with only one eye lash left. She just has one on each eye now.
Her animals that she brought to the hospital and got from the hospital on this stay.
Kip took a picture of me writing on the board :) We have to write her intake and output for the nurses.

Cutie even without hair on her head or face!
 At physical therapy
 She rode this bike all the way back to her room which was a good distance. She felt tired and a little sick so that was a big deal.
 Getting a sticker. She has quite the collection now because she usually gets one each time she has an appointment.
 Feeling sick, poor girl. I hate it.
 Playing with my phone camera and laughing.  Jaylie is so fun to be around, we always have a good time.

Breklyn and Crew at my parents while we were in the hospital. They love each other! My sister is good about sending me pics of the kids which I love. I miss them so much when I am away!
 Reeces are Jaylie's favorite treat nowdays. She didn't eat anything all day except these. I was just glad she ate something and they have lots of calories and fat so I didn't mind.
 She loves her DS, especially when she is feeling yuck.
Jaylie with her pole she is hooked up to. It was quite decorated this time with her necklaces and ornaments she made and her hello kitty bag.
Dad and Jaylie chillin on the bed we sleep in.