Hi Everyone -
I do apologize once again for not updating this site as often as I should. Life sure does get busy!
Anyway, we have gone in for two more tube changes since I last wrote. The first one only lasted one week and then Kaelyn had fevers and we ended up in the ER a few Sundays ago. She was admitted and we were inpatient for 4 days. She was put on IV antibiotics for too much E-Coli bacteria in her digestive system (Everyone has some e-coli in their digestive system, her was just a little too high). We also had her tube changed and the docs decided to place a larger tube. So far it has worked great! It has been about 9 days so far and it is still working beautifully. So hopefully we will have a longer time before the next change.
Kaelyn had an ultrasound done while we were there and we found some pretty encouraging news about her liver. The hepatic artery flow has found a way to reroute around the clog. So the liver is starting to get some arterial blood flow!! That was the best news I have heard in a while! This will help her bile ducts start to recover and regenerate a little quicker we hope. Dr. Healey (transplant surgeon) has said that this liver will probably be a good liver for Kaelyn in a few years! We are very encouraged by the thougt that she will not have to endure another transplant.
She also had a CT Scan. There is no new disease anywhere in her body and the existing tumors in her lungs are stable. Her AFP is now down to a measley 1. So amazing! We are also going to try a new protocol for her Irinotecan treatment. We are going to have treatment for two weeks and then get two weeks off instead of one. That will be so nice for all of us! It will give Kaelyn an extra week to recover and feel good and give us one less week of travel into Seattle. If her AFP starts to rise we go back to the 2 weeks on 1 week off schedule.
Everyone is doing great right now. For halloween Kaelyn is going to be a princess, her grandma Perry is making her a beautiful pink princess dress. She is so excited. Jacob is going to be a dog. I think Halloween will be great fun this year - if you remember last year we were in the hospital recovering from Kaelyn's transplant! It will be one year tomorrow from her transplant! I can't even believe it! I don't know where that year went!
Enjoy your day.
Love,
Angie
Saturday, October 15, 2005
Friday, September 16, 2005
Jacob in Kindergarten!
So, Jacob started Kindergarten last week. He absolutely loves it! He goes to PE, Music, and the Library! He is meeting new friends and says his teacher is the sweetest in the whole school. I am just so happy that he is enjoying school. He is such a big kid. He walks to and from school with his cousins (we only live a couple of blocks from the school). He is coming home awfully tired, but still manages to play outside til dusk!
Kaelyn is doing fairly well also. She went for three whole weeks on this last drainage tube (tied with our record!). Yesterday we did end up going into the hospital for a tube change, but it went very smoothly. No complications like last time. We were able to go home soon after she woke up. And today she is running around the house making me pretend blueberry milkshakes! What a sweet heart! We are on our week off of chemo and really enjoying our time at home. We will start up again next week. Her last AFP was at 7, so we will see what it is next week.
As soon as we get our new computer up and running I am going to try and post some pictures. I know it has been awhile since I last put up photos. The kids are just getting bigger every day!
Love to all,
Angie
Kaelyn is doing fairly well also. She went for three whole weeks on this last drainage tube (tied with our record!). Yesterday we did end up going into the hospital for a tube change, but it went very smoothly. No complications like last time. We were able to go home soon after she woke up. And today she is running around the house making me pretend blueberry milkshakes! What a sweet heart! We are on our week off of chemo and really enjoying our time at home. We will start up again next week. Her last AFP was at 7, so we will see what it is next week.
As soon as we get our new computer up and running I am going to try and post some pictures. I know it has been awhile since I last put up photos. The kids are just getting bigger every day!
Love to all,
Angie
Saturday, September 03, 2005
Doing Good
Kaelyn's tube change was a little more challenging this time, but she is doing good now. Some of the contrast (dye) that they push through the tube to see how her bile ducts are doing somehow entered the pancreas. So she was at risk to get pancreatitis, which is not fun. They had her stay over night just for observation. We did get to go home the next day, but she was having so much pain with her bowel movements that we took her into the ER the next day. Her pancreas enzymes are all normal and we found out later that week that she has some tears in her anus that are causing the pain. She is always so constipated with the chemo that we think she ripped her bottom and it just has not had time to heal. So we put her on a faster acting stool softener than she was already on and got some numbing gel for her poor bottom. She is doing much better now. I was very worried about the pancreatitis risk and am so happy that she does not have it.
So, this week has been fairly uneventful - thank heavens! We have only had to go into the hospital for our normal chemo every day. It is so good to have this three day weekend ahead of us. It will be a nice little break before we start chemo again on Tuesday.
Jacob start kindergarten next Wednesday and he cannot wait. He wakes up every morning with the countdown number until kindergarten! He met his teacher and some of the kids in his class last week and that made him even more excited! I think he is going to just love it!
Well, we love you all. Have a great Labor Day weekend!
Love,
Angie
So, this week has been fairly uneventful - thank heavens! We have only had to go into the hospital for our normal chemo every day. It is so good to have this three day weekend ahead of us. It will be a nice little break before we start chemo again on Tuesday.
Jacob start kindergarten next Wednesday and he cannot wait. He wakes up every morning with the countdown number until kindergarten! He met his teacher and some of the kids in his class last week and that made him even more excited! I think he is going to just love it!
Well, we love you all. Have a great Labor Day weekend!
Love,
Angie
Thursday, August 25, 2005
Tube Change...
So, we had to bring Kaelyn in today for a biliary tube change. This last one worked for a good two weeks though. Which, with our record lately, that is good.
She is in surgery right now. She should be feeling better by tomorrow.
Jacob is getting very excited for kindergarten. It starts in two weeks. I can't believe he is five, and he wonders when he is going to be six! He is such a joy to me though. He was so excited the other day when I was explaining to him that he has a spirit inside of him. He looked up at me and said, so when I move my arm, my spirit arm moves too? He also was excited to learn that his spirit looks just like him! He thought that was very neat.
Kaelyn was running around the other night just singing and dancing. She is so cute!! She also was pretending to be a butterfly. She really had a good week until last night when we could tell her tube was clogging up again. It is so fun to see her feel good.
Well, I will let everyone know how her tube change goes.
Love,
Angie
She is in surgery right now. She should be feeling better by tomorrow.
Jacob is getting very excited for kindergarten. It starts in two weeks. I can't believe he is five, and he wonders when he is going to be six! He is such a joy to me though. He was so excited the other day when I was explaining to him that he has a spirit inside of him. He looked up at me and said, so when I move my arm, my spirit arm moves too? He also was excited to learn that his spirit looks just like him! He thought that was very neat.
Kaelyn was running around the other night just singing and dancing. She is so cute!! She also was pretending to be a butterfly. She really had a good week until last night when we could tell her tube was clogging up again. It is so fun to see her feel good.
Well, I will let everyone know how her tube change goes.
Love,
Angie
Sunday, August 14, 2005
Utah trip
We are back! We had a very good time on our vacation and wish we were still on it! It was wonderful to get away from all of the hustle here and just enjoy all of the family and friends that live in Utah. The kids did amazingly well on the drive there and back (thank heavens for a dvd player in the van!). I think they really enjoyed doing something different and being a little extra spoiled with treats and snacks!
Little Kaelyn did have a bit of trouble with her drain while we were there, but not enough to land us in the hospital. She also contracted the Rottavirus somewhere, which we had no clue of until we came home and went to her appointment. But, she is all better from that now and is doing pretty well. We did start her back on chemo this week. Her AFP had jumped to 19.2 from 2.5 a month earlier.
We also got a second opinion from the Oncologists and Primary Children's in Salt Lake City. Wade's cousin in a pediatric oncologist there and he was kind enough to set it all up for us. The doctor there sent an email to the doctor who came up with the original protocol for hepatoblastoma and he came back with some advice. He said that the Irinotecan, which she is currently on, will deffinitely not cure her and once we go off of it the cancer will come back. Which we have evidence of from her AFP going up. So he suggested checking into doing additional chemotherapies - Doxirubicin and Ifosfomide (sp?). These drugs do produce much harsher side effects and are hard on her heart and kidneys. We brought this information back to our oncologists here in WA and they mentioned that these drugs may be to much for her kidneys and weak liver to handle. One of them has to be cleared through the liver and with it being in such a fragile state there is the possibility that it could cause too much toxicity in her body if it is not cleared properly. The other drug is hard and the kidneys and because she is taking immunosuppression for her liver transplant which is also hard on the kidneys it is not an option either. So, honestly, the Irinotecan is her best option at this point. It was still very good for us to get the second opinion so we could feel that what we are doing for her is the best treatment. We will continue to pray that some new drugs and therapies will be developed that she may be able to try. But in the mean while we will continue with the Irinotecan and enjoy our little family.
I am so happy that all of you enjoy our website. It is good therapy for me and provides good information for you. Please continue to send little notes on our guest board. It is always good to hear from all of you!
Love to all,
Angie
Little Kaelyn did have a bit of trouble with her drain while we were there, but not enough to land us in the hospital. She also contracted the Rottavirus somewhere, which we had no clue of until we came home and went to her appointment. But, she is all better from that now and is doing pretty well. We did start her back on chemo this week. Her AFP had jumped to 19.2 from 2.5 a month earlier.
We also got a second opinion from the Oncologists and Primary Children's in Salt Lake City. Wade's cousin in a pediatric oncologist there and he was kind enough to set it all up for us. The doctor there sent an email to the doctor who came up with the original protocol for hepatoblastoma and he came back with some advice. He said that the Irinotecan, which she is currently on, will deffinitely not cure her and once we go off of it the cancer will come back. Which we have evidence of from her AFP going up. So he suggested checking into doing additional chemotherapies - Doxirubicin and Ifosfomide (sp?). These drugs do produce much harsher side effects and are hard on her heart and kidneys. We brought this information back to our oncologists here in WA and they mentioned that these drugs may be to much for her kidneys and weak liver to handle. One of them has to be cleared through the liver and with it being in such a fragile state there is the possibility that it could cause too much toxicity in her body if it is not cleared properly. The other drug is hard and the kidneys and because she is taking immunosuppression for her liver transplant which is also hard on the kidneys it is not an option either. So, honestly, the Irinotecan is her best option at this point. It was still very good for us to get the second opinion so we could feel that what we are doing for her is the best treatment. We will continue to pray that some new drugs and therapies will be developed that she may be able to try. But in the mean while we will continue with the Irinotecan and enjoy our little family.
I am so happy that all of you enjoy our website. It is good therapy for me and provides good information for you. Please continue to send little notes on our guest board. It is always good to hear from all of you!
Love to all,
Angie
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