Thursday, June 30, 2011

Another Wednesday

We met with Dr. Brown, our radiation oncologist today and he said Jaylie was doing excellent. He seemed really impressed with her. He said her skin looks great. He said some get so bad and burned it peels and stuff so she's doing great that she doesn't have that. She doesn't have headaches and doesn't have to be on steroids either. I feel like she's doing great but it's nice to hear it from a doctor too.   She finished up the full brain and spine radiation on Monday and is now doing radiation just to the spot on her brain where the tumor was.  I still hate that she has to do radiation to her brain, it is the worst place on the body to have to have radiation. We are just hoping and praying that she will have the best outcome possible and she will be ok as far as future side effects go. I hate thinking about it, it's too hard. I can't think about the future, when I do I am in a dark place and am not ok, so I just don't go there. She had her once a week chemo today too and it went well. She was still scared but calmed down pretty fast after the poke was over and the tubie was in. They want to up her Ativan dose (anti anxiety drug) for next time, so we will see how that works. I am wondering if it just takes a while to kick in for her because after chemo we went and ate lunch and she was quite loopy and drowsy and saying funny things. She also ate A LOT for lunch! We were so proud of her! She had 4 pretty big bean and cheese nachos, one of the only foods she is wanting to eat lately. She had them dipped in sour cream, so that was great. After she ate them I was worried she would throw up because she hadn't eaten that much in a while. She was fine though, she just said she was full. After she ate we started wondering if it was the Ativan drug that made her eat more, who know, I guess we will see how next week goes. She hasn't lost or gained weight this week which is good I guess. They want her to gain so they are upping her appetite suppressant too. Hopefully it will help because it's still such a huge struggle getting her to eat and drink. She still is hating to take her medicines which is hard. There are so many of them, it's crazy. Breklyn is on antibiotics for a double ear infection too, there is lots of medicine at our house. Surprisingly I don't forget to give it to them, I thought going into this that it would be hard for me to remember, but it's easy when my mind is constantly filled with medicine, food, cancer, appointments, tests, etc. Life is totally different than it was a few months ago and I have a totally different perspective on life now. The little things really don't matter, I'm realizing what does matter in life, my children, my husband, my family, and my faith. I am so thankful that I am able to be my childrens mother, they are so amazing and teach me so much. I'm thankful for my awesome loving husband and for my family and friends who are so supportive. I am so thankful for all the prayers given on our and Jaylie's behalf. It's amazing seeing all the good come from something so bad. This is definitely the worst and hardest thing we have ever gone through. So much hurt and heartache. I know we are able to go on and be ok because of all the prayers, so we thank you! We thank our family, friends, acquaintances and strangers, we are forever grateful for your prayers and support.

I have been so busy I haven't been able to post pictures, but I will soon, I have so many I want to put on here :)


  1. Although we may not comment too much or too often... please know we are out here supporting you in our thoughts and prayers. We love you and hope and pray it is in God's will for a full recovery. ((((((hugs))))))

  2. oh kajsa! I love hearing your updates! I know I tell you that every time you update, but it's true!!! I'm so happy that Dr. Brown agrees and thinks Jaylie is doing great! HALLELUJAH! I can't believe she's been able to stay so strong through all of this!?! Amazing. A miracle, really.
    And, I loved reading that she ate 4 rounds of bean/cheese nachos with sour cream. Good girl! That's awesome!!!
    I love you, girl. I love your sweet family. I love that you guys are still going strong!! I can't wait to see you guys again soon. We're heading to Utah for a few weeks in July, but we would love to help over those big weekends when Jaylie goes in for the marathon chemo sessions, if that would help. I'll look on that helpinghands calendar and see if I can find out more.
    Just know I love you. I think of you multiple times a day and we're praying in every prayer for you guys. Love love love.

  3. Hey, this is Jake, the student who has been helping out with Jaylie's radiation treatments. I have been moved to a new clinic rotation now, but I was just wanting to voice my continued support for Jaylie on the remainder of her treatments. I wish everyone, and especially Jaylie, the best future possible. It's been inspiring to learn on a patient such as her and discovering such an involved family as yours. Thanks a million for creating this page so I may continue following through with Jaylie's and learning through your experience during this ordeal. Stay strong and continue doing such a fantastic job. Much love.