Tuesday, January 5, 2010

News continues to come our way both good and bad. Kelsey was started on her anti fungal which elevated her liver function extremely high the week before the New Year. This came with the bad news of not being able to take her study drug. This was sad because we had evidence that it was working. Reversal of the little progress it was making started the week she was off of it. We do have high hopes that she will be able to take it again in the near future as soon as her liver behaves. She had scans of her lungs and liver today. Definite improvement in the lungs. We haven't heard the report about the liver. Kelsey continues to fight nausea, but her energy levels have increased. She walks over to Karly's room to hang out with us on a daily basis now.

Karly had been having a very difficult time until we put her back on a constant low dose narcotic and started the TPN which is IV feeding. She has quit being nauseous, headache is less, fever is much less, and strength is gaining. Her eyes are open more of the day than not, she has more spunk(not normal, but you get to see glimpses of her personality), and she converses more. I am liking this. I pray that as they start to take her off the IV medications to oral versions, she will not regress. As they were looking for sources of the fever, they scanned her sinus, chest, and abdomen. The sinus, chest, and kidneys are looking good. In fact, they could see definite improvement of the lymphoma. However, the spleen didn't look normal. Actually, it hadn't from the beginning. We suspect that there was lymphoma in the spleen. They will check it again in about a week. Karly has just began to be able to eat again. She had a few pieces of popcorn Sunday evening. She asked for Ivanhoe's breaded tenderloin, tots, and strawberry lemonade Monday evening. I wasn't able to provide that meal for her, but she did want pork fried rice and that I could get for her. She ate a few bites. I suppose it just takes time to be able to eat again in any quantity. She enjoyed the 2 weeks with her family and Zach. If any of you have Facebook, you can see Tracy, Tyler, Trent, and Zach with the cutest of shaved heads. Karly enjoyed conducting the event. Sara Coggins, a friend, joined us for New Year's Eve in Karly's hospital room and stayed with both girls while the rest of us traveled back to Indiana for my dad's memorial service on January 2. The girls were able to Skype the service which made it bearable for us to be able to leave them. They watched and participated in the service via Skype. Afterwards, they were able to see and speak to friends. What a needed, timely, and awesome gift the laptop was to us. It has brought us great happiness as we are able to connect with each other nightly. Karly sparks when she is able to see her hamster, Bobby, on the screen.

Dad's service was a celebration of his life. It included his favorite hymns, stories, songs, and the infamous Itsy Bitsy Spider danced by the grandkids(girls only). People were able to share about dad which blessed the family. Thanks to all who came and shared this day with us.

I flew back to NIH on Sunday. It was a whirlwind weekend with so much being accomplished. The house which was in a sort of upheaval was put back into a mostly normal state. Karly and I left in an hours notice to come out here so orderliness was not on our minds. We also thought we would only be gone a few days. I didn't realize the stuff that I had left laying around. Yeah, it is more orderly and the family can now move on with life in a more normal state. It felt good to be home for a short while, yet it didn't feel quite like home. I think that maybe it had something to do with attachment and ability to cope with things. Tracy is doing a fabulous job handling all the issues at home. It helps that we can Skype and go over things together. Thanks to all who have helped us get this far down our journey and thanks to all who are walking this journey with us.



  1. Hi,

    I found your blog and wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

    Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.

    Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    (800) 776-OLEY

  2. Thanks for posting again. Even little bits give us a glimpse of how to pray specifically. I still wish there was a way to get you a tenderloin, tots and a strawberry lemonade.

    Love to you all,