Saturday, October 15, 2011

Home Tomorrow

We have been here in the hospital since Thursday morning. It has gone pretty well and Jaylie has been feeling pretty good for the most part. Jaylie is so funny and is such a good example to me. Thursday morning we woke up early bc we had to be at the clinic at 8. Jaylie woke up and said she was excited, Kip asked about what and she said "I'm excited I get to go stay in the hospital for a few days!" I was surprised and kinda relieved that she wanted to go, it makes it so much easier on me and Kip. She has such an amazing attitude. She had her hearing test thursday morning and it went really well. No hearing loss or change since last time which is huge. A lot of times they have to lower the doseage of the chemos to prevent more hearing loss. Hopefully it will be good news every time she gets one.

Jaylie got 8 hours of cisplatin (chemo) thursday night and was up peeing every 2 hours. Luckily the nurses have been taking her so I didn't have to get up every time. Jaylie woke up Friday morning feeling sick to her stomach.  She said to me, "I hardly slept at all last night". She was tired and feeling sick all day that day. She threw up once that morning right after she ate breakfast and then didn't really eat until dinner. She had two tiny bites of dinner and then threw up again. She doesn't complain much and doesn't seem to be too bothered by throwing up. The zofran is helping with her nausea a little. She doesn't complain unless I ask her how she is feeling. We went to the pet therapy dog fashion show on Friday which she loved!! The child life specialists put it on. They are so wonderful. They also had some of the UT football team come and visit in one of the playrooms here at the hospital. It was neat. We got lots of pictures of both events. Jaylie was worn out by the end. She got cyclophosphomide (chemo) Friday night. It ran for an hour. She did good Friday night and Kip and I both stayed here and slept pretty good. Jaylie didn't really eat anything all day today. She had a few crackers this morning and that is about it. The doctors say the chemo makes them have no appetite and say its ok if they don't eat. They gave her a drug called amend that helps with the nausea and she has felt pretty good today. She hasn't thrown up today at all. My Dad and Kindra brought Breklyn and Crew up. They have had them this weekend and it was good to see them.  We played in the playroom and hung out in Jaylie's room. It is a little crazy up here when all the kids are here but it was fun. I miss them, they are so darn cute. Its been nice having Kip up here, we are staying the night again tonight together with Jaylie. She likes when both of us stay here with her. She was so excited for Breklyn and Crew to come. They came Friday night for about a half hour too. Thank you to everyone who helped with them Thursday and Friday! Jaylie is asleep now,  she got another hour of cyclophosphomide tonight. I am exhausted and so ready for bed.

It's so sad seeing all the kids here and wondering what their story is or getting to know them and finding out their story.  Its hard and heartbreaking seeing other kids go through this stuff too. There was a teenage girl who had her radiation treatments right before Jaylie had hers so we would see her everyday Monday through Friday for a few weeks. Her mom and younger sibblings would always go too and they were all so nice. She had bone cancer in her leg. We saw her on our way in to the clinic on Thursday and my heart broke. Her leg had been amputated. I went and talked with her for a minute and she had a smile on her face the whole time. I told her we were praying for her etc and then walked away and just started balling. It was hard to make it stop. I hurt for her and it just makes this all so real. It makes me really think seeing stuff like that and knowing what cancer can do to you. I usually try not to really think about what is going on because it is too hard. I just go through the motions and don't really think about what is happening, but when I do its hard to stop crying. I am glad I am not at St Judes for treatment bc I would proably have met a lot more kids going through this and its so hard seeing them go through it too.

Anyways, Baby Briggs is hanging in there. They are not getting out of here anytime soon. He keeps having episodes where he stops breathing and it's super scary. He has an infection too but is on antibiotics for it. They are probably going to do a scope down his throat to see if they can see a problem. The doctors and nurses don't know why he is having the breathing issues so its been very frustrating for Ryan and Brandilyn to not know what is wrong with him.  I feel so bad for them, they are worn out from the ups and downs. I feel bad for my parents too having to deal with Jaylies situation and little Briggs. Please pray for him and for the whole family if you will.  Prayers work, I know that!

I have a lot of pics to put up but the Internet isn't working too well. Hopefully I'll be able to do it soon. And the 5k post will be coming soon, hopefully:) It's long!

 Painting in the play room

 Pinkie (kitty's name) with her new hat that the nurse got her. This super nice nurse got Jaylie two knitted hats, this little knitted blanket and this one for her kitty.

The face I got when I told her to smile:) Love this cutie!

I had a ton more pictures of the dog show and Jaylie with the UT football players but my phone died for good the day after we got home and I hadn't synched it. I'm sad I lost all those great pictures.

1 comment:

  1. You inspire me Jaylie! I was diagnosed with a rare brain tumor in October of 2010 (a year ago today), and your strength gives me strength! Be strong, you can do this!!