AFP

Kaelyn had an AFP drawn on Thursday, <.08!!! Hurray! I was so happy. It has been 3 months since her last level was drawn and, needless to say, I was a little nervous. This was the first time we've waited so long to check up on her AFP. I am so happy that it is still so low! What a relief. I think no matter when we draw that level I will be nervous, but atleast we can breath for another 3 months, cancer free!

She is still inpatient, hoping to go home tomorrow. I got to spend the night at home last night with Jacob. It was very refreshing. Jacob is doing well...I just love that boy! He is such a sweetheart.

Angie

Positive blood cultures (again...)

Well, on Wednesday night (night before schedule tube change) Kaelyn came down with chills and fevers...off to the hospital ER we go. Once again she has positive blood cultures! It just comes on so fast. She was playing and dancing one minute and chilling and fevering the next. She did have her cholangiogram and tube change on Thursday as planed and everything went well. The docs say that her bile ducts look great and the narrowing is getting better, it's more elastic than solid, which is good. One thing that they noticed that may be causing all of these infections is a sludge ball in one of the bile ducts. It looks almost like a gall stone. The IR Doc tried to suction it out, but it didn't budge. So, the next tube change they are going to try and dissolve it a little with some special bile thinner stuff. Hopefully that will loosen it enough to were it can be suctioned out.

We are still inpatient and will probably remain such until Monday. Her cultures have come back positive two days in a row. Hopefully todays will stay negative. The docs need to have two consecutive negative cultures in order to send us home.

Love,

Angie

Donation button and badge...

So, Kaelyn is doing much better. But unfortunately Jacob caught the bug. He is doing better today, but the weekend was pretty much miserable. Oh well....can't be healthy all of the time! Luckily I think we are over it, (crossing my fingers!).

I wanted to explain the new sections on the right hand side of our blog. First I have placed a donation button for Kaelyn's medical fund. Please do not feel obligated to donate. A lot of people ask me what they can do for us and I don't know what to say, so I decided to place this donation section on the website for the people who want to help but do not know how. We have incurred debt with Kaelyn's treatment and care and would greatly appreciate anything you wish to donate. Everything donated will go towards Kaelyn's medical care. But, once again, please don't feel obligated. Thank you for all that you have done for our special girl and our family.

The second new thing I have placed on the right side bar is a donation badge for cancer research, organ donation and Seattle Children's Hospital. I feel like I needed to be a part of this some how and felt that placing this option on our website would help us all feel like we are doing something to further these wonderful life saving causes. Especially after reading about the federal budget cuts for cancer research. Once again, do not feel obligated, just know that if you feel like donating to a worthy cause the ones I have placed here are a great option. Options that have saved Kaelyn's life more than once.

Well, I will try and update tomorrow after Kaelyn's clinic appointment. Hopefully all is well. Thanks again for keeping up with our family and support.

Love to all,

Angie

Kaelyn sick...

Little Kaelyn has a flu bug I think. She is not feeling well. Hopefully she will feel better soon. She has a clinic appointment next tuesday and a cholangiogram and tube change next thursday. So, next week will be busy. I will try and update after those two appointments to fill you all in.

Love to all,

Angie

Childhood Cancer Research budget cuts...

I need your help....

There have been recent federal budget cutbacks for childhood cancer research. "Rare tumors" is among those to get their budget cut. Hepatoblastoma fits into that category. Without funding and research kids will continue to die.

Please take 10 minutes to visit http://www.curesearch.org/news_and_media/news_article.aspx?id=4470

Read about the cuts, and the impact, and send a letter to your representatives and the president. You can do it right from that website.

After you do that, tell everyone you know to do the same.

Another link that might be interesting to view is this story from ABC. It blatantly states that rare childhood tumors is one of the programs that will have to make cuts. It just made me want to cry and yell at the Bush administration and tell them Kaelyn's story. Just copy and paste this in your browser to watch: http://abcnews.go.com/Video/playerIndex?id=2879611

This is vitally important to so many children and adults who are facing cancer. It is not right that people will die just because of budget cuts.

Thank you so much for taking the time to help save lives. Kaelyn's life is a direct result of what can come about from research and clinical trials. Life is too precious to disregard.

Love you all,

Angie