I apologize for not updating the website in a while. Once we started back on chemo 6 weeks ago, I kindof had to undergo an adjustment in how I manage my time. It is a lot to take Kaelyn in to Seattle every day for two weeks. I think I am finally getting used to it. Anyway, enough about me!
Kaelyn has been doing extremely well on this type of chemotherapy, Irinotecan. She has not had any of the bad side effects that we were warned about. And the best news of all, it is working!!! Her AFP (Alpha-feta Protein, cancer marker) has dropped dramatically over the last 6 weeks. She started out at 280, and is now as of this week at 46. Isn't that amazing! We are all very excited. She will have some CT scans done this friday, so we will be able to get a good look at the tumor in her lungs and make sure that we don't see any more. I am not thinking that we will find anything new since her AFP has come down so greatly.
Now her liver on the other had has been causing some issues. We have been in twice since I last wrote to put in new drainage tubes becuase the others kept clogging up and causing jaundice and fevers. But so far, this new tube that was placed one week ago has been working marvelously. They place a larger tube in and also were able to do a balloon dilitation of the clogged bile duct. So far, so good. Because of all of the the issues we have been having with Kaelyn's biliary drain, the hospital has put in a new protical for these types of drains. They will be changed automatically every three weeks. This will hopefully prevent the episodes of fevers and jaundice. Kaelyn is a trend setter that's for sure!
Her bile ducts are extremely damaged and she will need an other transplant. There is no saving this liver any longer. Unfortunately, she cannot be listed until she is cancer free for a few months. Hopefully that will happen sooner than later. Her oncologists are always telling us that this is not a curative treatment, that we are just prolonging her life. But we have great faith and much hope that a miracle will be in store for our beautiful daughter. She has been the recipient of so many miracles this past year. I believe that our loving Father has a great love for her and is watching over her. I read in the Ensign a great story about a mother whose child was born with many birth defects. The quote that really struck me as powerful and pertained to my life went something like this, Sometimes it takes a great deal more faith to accept God's will than to pray for a miracle. What ever is in God's plan for our Kaelyn is the right path for her, but I will continue to pray for that miracle and accept what is given to me. Heavenly Father loves us all, our lives are not easy and everyone has their own trials, but it is how we handle these trials and make of our lives that really counts. One day, we will all be together again in the arms of our Father and we will live and love even greater than here on earth. It is a wonderful promise and gift to us to be able to look forward to our eternal families.
I love you all. I hope you don't mind me bearing a short testimony here on the website, I have an easier time writing my feelings than speaking them.
I will keep this site more up to date.
Love,
Angie
