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
Wednesday, June 08, 2005
Wednesday, May 04, 2005
Yet another Cholangiogram...
Well, Kaelyn needed to go in today for another cholangiogram (where they shoot dye into her biliary drain to see if it is blocked and needs to be replace, and also to check the status of her bile ducts) of her liver drain. This time her tube is not blocked but some of her bile ducts are starting to deteriorate from the lack of blood flow. From the sounds of it, this is not a reversable process. We have not yet talked with Dr. Healey about it, so he may have some advice on how we can slow this process. I don't know exactly what this means, so when we get more info from Dr. Healey tomorrow I will try and post more about this.
In other news, I have come down with strep throat! Darn it all. Luckily we caught it early and hopefully no one else will get it. So I am moving a little slow and cannot be around Kaelyn until tomorrow. Which is hard for me. But thankfully Wade's mom, Sue, was able to take tomorrow off and spend the night with Kaelyn tonight. Wade is almost out of sick leave at work, and we need to save it for emergencies, so his mom- the wonderful person she is, is helping out. They have put Kaelyn on precautionary antibiotics just in case she has strep also.
Jacob is riding his bike without training wheels! He is such a big boy! I can't even believe how old he looks cruising around on his bike! He just loves it, he rides from dusk til dawn just about!
Well, I need to get going. I will try and give you all more information as it comes available.
Love ya,
Angie
In other news, I have come down with strep throat! Darn it all. Luckily we caught it early and hopefully no one else will get it. So I am moving a little slow and cannot be around Kaelyn until tomorrow. Which is hard for me. But thankfully Wade's mom, Sue, was able to take tomorrow off and spend the night with Kaelyn tonight. Wade is almost out of sick leave at work, and we need to save it for emergencies, so his mom- the wonderful person she is, is helping out. They have put Kaelyn on precautionary antibiotics just in case she has strep also.
Jacob is riding his bike without training wheels! He is such a big boy! I can't even believe how old he looks cruising around on his bike! He just loves it, he rides from dusk til dawn just about!
Well, I need to get going. I will try and give you all more information as it comes available.
Love ya,
Angie
Sunday, April 17, 2005
Wednesday, April 13, 2005
Disneyland and other things
I am sorry it has taken me so long to write after our Disney trip. I think my mom is right when she said that I am still living in the Disneyland glow! We really had a good time. Jacob has said that he now wants to live in Disneyland. He loved all of the fast rollercoaster type rides, he is such an adrenaline junky!! It was so fun to see him have such a good time. It took Kaelyn a couple of days to get used to all of the lights and sounds of the park, she was pretty overstimulated. But by the last day, she had a really good time. She really liked the "It's a Small World" ride and the "Dumbo's Flying Elephant" ride. It was a good vacation, but it was also a lot of work! We are glad to be home, though we loved the fun we had.
I want to thank everyone who was so kind and generous in sending us donations to help pay for our trip. We actually received enough funds that we had very little out of pocket expense. It was such a surprise when we started receiving all of your kind gifts in the mail and from Wade's co-workers. We were in a little bit of shock I think! Anything that is left over after paying for our trip is being put into an account that is designated only for Kaelyn's care and emergencies. You all have given us such a wonderful gift, not just the money, but the knowledge of how many people are out there who care about us and our Kaelyn's well-being. Thank you again! I wish I could thank everyone in person and give you all a great big hug.
I can't put any pictures up from our trip in this post, because we are in the hospital with Kaelyn. So I will put some up in a future post. Kaelyn was supposed to start her Chemotherapy on Monday of this week. But when we went in to start, her labs came back with an elevated white blood cell count so our Oncologist didn't want to start therapy, nor did I. The next morning, Kaelyn woke up with a fever and we brought her into the ER. She has an infection where in her bile ducts, most likely from the biliary tube. She has been on some good antibiotics and went in yesterday for a new tube to be placed and for them to look at her biliary system to make sure that there is no blockages. We were really nervous, because the last time we did a surgery like this was when she went into septic shock. Thankfully, she came back from surgery yesterday healthy and well. They were able to place a new drain, the old one had a blockage in it and her biliary system did not have any blockages. So, we are currently giving her IV antibiotics to make sure she will fully recover from her infection and will probably start her chemotherapy on Monday.
Thank you again for all of your love and support through this time. We honestly gain strength from your prayers and concern for us. I know you all want to feel like you are doing something to help. You are. Just keep praying and thinking of us and our children. We love you.
Love,
Angie
I want to thank everyone who was so kind and generous in sending us donations to help pay for our trip. We actually received enough funds that we had very little out of pocket expense. It was such a surprise when we started receiving all of your kind gifts in the mail and from Wade's co-workers. We were in a little bit of shock I think! Anything that is left over after paying for our trip is being put into an account that is designated only for Kaelyn's care and emergencies. You all have given us such a wonderful gift, not just the money, but the knowledge of how many people are out there who care about us and our Kaelyn's well-being. Thank you again! I wish I could thank everyone in person and give you all a great big hug.
I can't put any pictures up from our trip in this post, because we are in the hospital with Kaelyn. So I will put some up in a future post. Kaelyn was supposed to start her Chemotherapy on Monday of this week. But when we went in to start, her labs came back with an elevated white blood cell count so our Oncologist didn't want to start therapy, nor did I. The next morning, Kaelyn woke up with a fever and we brought her into the ER. She has an infection where in her bile ducts, most likely from the biliary tube. She has been on some good antibiotics and went in yesterday for a new tube to be placed and for them to look at her biliary system to make sure that there is no blockages. We were really nervous, because the last time we did a surgery like this was when she went into septic shock. Thankfully, she came back from surgery yesterday healthy and well. They were able to place a new drain, the old one had a blockage in it and her biliary system did not have any blockages. So, we are currently giving her IV antibiotics to make sure she will fully recover from her infection and will probably start her chemotherapy on Monday.
Thank you again for all of your love and support through this time. We honestly gain strength from your prayers and concern for us. I know you all want to feel like you are doing something to help. You are. Just keep praying and thinking of us and our children. We love you.
Love,
Angie
Wednesday, March 23, 2005
Kaelyn is home, and we are off to Disney!
Hi everyone!
We were able to take Kaelyn home yesterday. She is doing fine. She does have a bag on again for her bile to drain externally, but she is feeling much better. We are going in for an ultrasound tomorrow to see what is going on with her bile ducts.
We are going to Disneyland next week! We leave on Monday! We are all very excited, especially Jacob. I will make sure and take a lot of pictures and then I will post them here for you to see.
Love to you all!
Angie
We were able to take Kaelyn home yesterday. She is doing fine. She does have a bag on again for her bile to drain externally, but she is feeling much better. We are going in for an ultrasound tomorrow to see what is going on with her bile ducts.
We are going to Disneyland next week! We leave on Monday! We are all very excited, especially Jacob. I will make sure and take a lot of pictures and then I will post them here for you to see.
Love to you all!
Angie
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