Sunday, July 10, 2011

Jaylie Update

I haven't been able to update because we have had visitors here with us all week and have been staying at my parents guest house on their property. Kip's twin brother and his family came (they have 3 kids around the same ages as ours) and we had so much fun. It was great having them here. Jaylie feels great and has so much energy still, it's pretty amazing. I was worried how she would do all week but she kept up great and had just as much energy as her cousin. They are only 6 days apart and they get along so well. I will put some pictures up when I can.

Jaylie only has 3 days left of radiation!!! I can't believe it! I'm so excited. It will be so nice to be done with this phase of treatment and not have to go everyday. It gets old and tiring. It is also scary to be done with radiation because that means the real heavy duty chemo is right around the corner. I'm scared for that. We have 5 weeks off then the chemo will start and will last about 6 months. She should be done with her treatments around mid February. She will have an MRI done sometime in the beginning of August to check for cancer. We are hopeful that she will be fine and hopefully there will be no signs of cancer. You have to be hopeful and positive in situations like this or it's just too hard. Jaylie is a fighter and has done so amazing through the radiation. If I keep zofran in her right before radiation she is not nauseous, she still has tons of energy, and  skin looks great, you can barely even see the faint red where the radiation was on her spine. We were told it's normal to be red, peeling, blistering, or hurting. Her ears are a little bit sensitive but are not too red. We are so blessed that she has done this well. The radiologist said she is doing great. He said there are a couple other kids they are treating full brain and spine like Jaylie and Jaylie is doing exceptional compared to them. He said to us that when a child does this well through this you just have to sit back and say wow and be thankful. We sure are thankful. We hope that she will do better than the normal through her chemotherapy also. Those 6 months are going to be so hard. I'm not looking forward to them. I wish we could just fast forward time and have it be over. We are just going to try and enjoy these few weeks of no radiation or chemo. We still have to go to the cancer clinic to get her blood checked every week, which means she has to get her port accessed (poked). She hates that so hopefully she will continue to get more used to it because we will have to get her blood checked every week until treatments are all done.  She is getting better about taking her medications. She still hates to do it but she usually doesn't fight it too much anymore.

Kip and I are doing pretty well considering. Some days are hard, some are good. It is a roller coaster all the time. Sometimes the littlest things will set us off whether its seeing a picture, hearing a song, or just our minds thinking about things. One minute we will be fine and then the next we will be balling. The good thing is that we usually don't have hard times at the same time. Kip is great and I am so glad I have him to cry to and with. It helps that Jaylie is doing so well and that she is so happy most of the time. It makes it a little easier to deal with everything knowing she is ok. She is so amazing and we feel honored to be her parents.

1 comment:

  1. Loved reading the update, Kajsa! And, 3 more times left of radiation is crazy! I am in awe that she has done SO well for all these weeks!!

    Enjoy this next little break!

    Lots and lots of love to you, Kip and the rest of your gang! Love love love melis