Great news! Kaelyn's AFP is down to 7.8 as of last week. It has never been that low, even after transplant. So we will continue on with atleast one more course of chemo through July. After that we have a decision to make, keep going with the chemo or stop and see what happens. We are not sure what we will decide. We also are considering getting a few other hospitals involved with second opinions and options for Kaelyn's treatment, both with her cancer and her liver issues. I think the extra information with help make our decision. Kaelyn is also back in the hospital right now. We came in on the 4th of July for a fever. She needs another drain change. She also is having some blood in her stools, so we are running a bunch of tests. So far they are all negative. The doctors are thinking that possibly her drain is in too far and causing some irritation in the intestine which may be causing the bleeding. So, tomorrow they will change the drain and we will see what happens.
Love to all. Angie
Friday, July 15, 2005
Monday, June 20, 2005
Routine Cholangiogram
Kaelyn is in today for a routine biliary drain change. And it came no time too soon. She has started to get a little yellow over the past few days and I can tell that the bile is not draining internally very well again. Really though, we can't complain. This has been a record three weeks without any hospitalizations! It is time for a celebration! As long as everything goes well with the tube change we should only be inpatient for one night.
She is such a sweet girl. We love her so much, she is always dancing and singing when she feels good and loves to copy EVERYTHING Jacob does. They are really cute, those kids.
We are planning a trip to Utah the first week in August to visit with all our friends and family. We are all very excited to see everyone. I don't think we have all been to Utah since Kaelyn was 2 months old! I couldn't believe it has been so long. We really can't wait to see everyone again.
Now time for the not so great news. We met with the oncologists last week,they are not hopeful for this chemotherapy to be a long term cure. Though we knew that when we started, but we were more hopeful that we would get a few more good years, possibly 10 or so but they are giving her a possibility of two years left of her sweet life. We will continue with her chemo for as long as her body tolerates it and her cancer is responding to it. Most likely her cancer will become chemo-resistant and it will no longer be affective, though we don't know how long it will take the cancer to evolve to that state. It could be a year or two or it could be a few months. This new chemotherapy she is on is the best out there for her condition. It has provided many children with more time. Before Irinotecan came out the kids only lasted 6 months or so. So we have to be thankful for the blessing of new medicine, it is giving us more time. And who knows, maybe in more time another new drug will be developed. I believe there is always hope and we can always rely on Heavenly Father for a miracle, even if it is in the miracle of peace and comfort. True, last week was a very difficult week for us, our rose colored glasses were removed and we saw this situation for what it is. But we have her now and she is doing really well, what more do we need. Please continue to keep Kaelyn in your prayers. She is such a brave, beautiful little girl. And I know that your prayers are helping all of us.
Please don't let the news get you down. We are all children of God and He will comfort us in our sorrows and rejoice with us in our triumphs. Kaelyn willl be all right and so will we.
We love you all,
Angie
She is such a sweet girl. We love her so much, she is always dancing and singing when she feels good and loves to copy EVERYTHING Jacob does. They are really cute, those kids.
We are planning a trip to Utah the first week in August to visit with all our friends and family. We are all very excited to see everyone. I don't think we have all been to Utah since Kaelyn was 2 months old! I couldn't believe it has been so long. We really can't wait to see everyone again.
Now time for the not so great news. We met with the oncologists last week,they are not hopeful for this chemotherapy to be a long term cure. Though we knew that when we started, but we were more hopeful that we would get a few more good years, possibly 10 or so but they are giving her a possibility of two years left of her sweet life. We will continue with her chemo for as long as her body tolerates it and her cancer is responding to it. Most likely her cancer will become chemo-resistant and it will no longer be affective, though we don't know how long it will take the cancer to evolve to that state. It could be a year or two or it could be a few months. This new chemotherapy she is on is the best out there for her condition. It has provided many children with more time. Before Irinotecan came out the kids only lasted 6 months or so. So we have to be thankful for the blessing of new medicine, it is giving us more time. And who knows, maybe in more time another new drug will be developed. I believe there is always hope and we can always rely on Heavenly Father for a miracle, even if it is in the miracle of peace and comfort. True, last week was a very difficult week for us, our rose colored glasses were removed and we saw this situation for what it is. But we have her now and she is doing really well, what more do we need. Please continue to keep Kaelyn in your prayers. She is such a brave, beautiful little girl. And I know that your prayers are helping all of us.
Please don't let the news get you down. We are all children of God and He will comfort us in our sorrows and rejoice with us in our triumphs. Kaelyn willl be all right and so will we.
We love you all,
Angie
Wednesday, June 08, 2005
I know it's been a while....
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
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, 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
Subscribe to:
Posts (Atom)