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!!


1 comment:

  1. What a sweet Christmas! I loved reading about how Jaylie was feeling well enough to go play at your parents! And, so great that those darling kiddos were so thankful. What a present that is, in and of itself! They deserve to be spoiled. You ALL do. What a roller coaster this year has been!!

    And, hello, how cute is that little Jennifer girl? Oh my word, I got teary eyed just reading about her. I'm so grateful there are people put in yours and Jaylie's life to help make this awful disease more bearable.

    As you approach this last round, know that we are STILL praying and thinking of Jaylie every single day. We love her along with the rest of of you. Can you believe how far you've all come? I am amazed at the journey you have been on and cry just thinking about how brave you've all been.

    We love you. We pray for you. We're cheering for you. And we are so grateful for your incredible examples through this unimaginable time. LOVE LOVE and CYBER HUGS to all y'all. :)