CT scan results

Hip Hip Hurray!!! Kaelyn is still cancer free! We braved the snow storm that we had here and went into to Children's for her scan (I still have that Utah blood flowing through me - bring on the snow!). It went wonderfully well. She did not need anestesia which makes it so much easier on her. She is such a big girl. Her oncologist, Dr. Thomson was very pleased with the results. There are three areas in her lungs that they have been watching and all of them are either smaller or unchanged with means that they are scar tissue of some kind. Dr. Thomson also said that the greatest chance of recurrence is within the first year post chemo. And Kaelyn has just past her year mark with no sign of recurrence! There is always a chance of recurrence with Hepatoblastoma, but atleast it is less. I am just bursting! It is really very exciting. She only has to go get CT Scans every six months now and AFP's drawn every three (unless there are liver issues).

I love posting good news! Hope you all had a great Thanksgiving, we sure did.

Love,
Angie

Good news...

Kaelyn is doing so good! Her docs have given her the okay to start preschool! I think I will start her on Monday. She is so excited. It will be so good for her to do some normal three year old things and play with different kids. They also tapered down her prednisone (steroid) to every other day. Which is wonderful! The only issue that we have is with Bob, her JP drain. Dr. Healey thinks that maybe because we have had it to suction that there has been too much negetive pressure not allowing the little leak to heal. So, we have taken off the suction and will see what happens. So far, Bob is still draining but it will take time for the leak to heal.

Kaelyn does have a rountine CT scan and oncology clinic visit scheduled for the end of this month. We have to do this every three months. She also has a routine biliary drain change scheduled for the beginning of December. Hopefully all of this will lead up to a very uneventful, blissfully simple holiday season. If I don't post again before next week, everyone has a wonderful Thanksgiving!

Love,

Angie

PS: I finally posted some pics of the kids from halloween. The other is one that the hospital is using in one of there mailer add campains (my daughter, the super model!)

No news is good news!

I just wanted to post and let you all know that Kaelyn has been doing really well. It has been so fun watching her play while she feels good. We have had a really good two weeks. She does still have the JP drain, and it is still outputting some, but she sure doesn't let that slow her down! She calls it "Bob". I kept saying that we needed to go empty the bulb (the JP drain has a little bulb on the end to collect the fluid) and one day Kaelyn asked me, "mommy why is his name Bob?"! Ever since then the JP drain has been our friend Bob. It's very cute!

So I finally got the kids in for pictures the other day! Now I can replace the one I have on my wall with Kaelyn beautifully bald with an NG tube in her nose. The kids did great and we got some really cute pictures. I won't be getting them until December but it was all worth it. We had to brave the flood waters all around us to get to the photo place. It's been crazy wet around here. We went to the river a couple of days ago and it was so high and turbulent. They had all of the roads closed any where near the river. On wednesday Wade couldn't even get out of town to get to work! Our house is fine, but there are others that we know that have had some flooding. It's been very wet...

Anyway, all is well. Kaelyn goes in on Tuesday for her transplant clinic appointment and I am sure we will be talking about "Bob".

Angie

Surgery went well...

Kaelyn came out of surgery yesterday around 12:30 pm. The IR Docs were able to get the stent through the stenosis and into her intestines. They did the angio (balloon) dilitation and opened up the blockage. The rest of her bile ducts still look great. That is music to my ears! They say that this tube should not clog up as easily as with her last liver because of the way the bile ducts look. There should be little to no sluffing and so less icky stuff to clog up the tube. The plan is to change the tube once a month (which was the plan with the last liver, but we could never make it that long). Hopefully all will go as planned. She was discharged from the hospital this afternoon and we are now home. She is having some pain from the procedure but is doing better today than she was last night.

Good news!

Angie

Cholangiogram and tube placement

So, Kaelyn is currently in IR for her cholangiogram and tube placement. They are planning on doing the balloon thing through the blockage today. So hopefully that goes well. She has been in surgery for about an hour and a half right now. Usually it only takes an hour. It always makes me a little nervous when things start going longer than normal.

Halloween was so much fun last night! Jacob was a veterinarian and Kaelyn was a mermaid princess. They looked so good! I did get some pictures, but cannot find my USB connector for the cammera...hopefully I will find it soon so I can start posting pictures again. Kaelyn has changed so much since her transplant. She has so much hair! I actually gave her bangs a little trim a couple of weeks ago, her first haircut! She was so happy! She said, "mommy, that didn't even hurt!" I think she was a little nervous of the scissors coming so close to her fore head. She is such a cute doll. And Jacob is just growing up so fast. His teacher says that he is such a great kid in class and that he is an example to all of his classmates! He is learning to read and write! I love 1st grade! It's so fun to see him sit down and try and read a book. I loves to write on white boards and put little messages on them. The last one he did was I love mom. Melt my heart!!!

I will try and post later today to let you all know how it went.

Angie