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
Saturday, September 03, 2005
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
Saturday, July 23, 2005
Kaelyn doing great
Kaelyn is doing very well right now. It is great to see her feeling good and gaining weight! She has a transplant appointment on Monday and and oncology appointment on Wednesday, so I will try and give you an update after we hear what her docs have to say.
Love,
Angie
Love,
Angie
Monday, July 18, 2005
No more chemo for now!
To update you all from the last post: Kaelyn ended up not needing the drain change. It started draining again all on its own. They let her go home on IV antibiotics (another nursing skill I get to learn!). The doctors cultured her bile and found some bugs in there they wanted to kill off, nothing abnormal. I think they are just trying something new to see if it will work. So far so good. She really has been feeling pretty good in the last week or so.
Some more good news. Kaelyn has finished her protocol of chemo and we have decided not to start another 12 week course. We are going to see what her AFP does in the next month or two. So, she gets a much needed break! Yeah! If her AFP starts to rise again we will put her back on her treatment, but if not we will have a huge celebration! Wade and I are trying to make the decision whether or not to have the dead tumors removed from her lungs. A chest surgery is really hard on Kaelyn. Her surgeon wants to do the surgery, but her oncologist doesn't think it would be worth the risk. So we are trying to education ourselves on what would be best for her. We have our paperwork in for a second opion from a different hospital and are working on getting the paperwork into St. Jude's Children's Hospital for their opinion and any suggestions. It is a difficult decision so we just want to have as much information as we can before we decide.
We are in the hospital right now for a routine drain change. But we should be able to go home tomorrow.
We are all looking forward to our upcoming trip to Utah. It will be a great break for us all.
Love,
Angie
Some more good news. Kaelyn has finished her protocol of chemo and we have decided not to start another 12 week course. We are going to see what her AFP does in the next month or two. So, she gets a much needed break! Yeah! If her AFP starts to rise again we will put her back on her treatment, but if not we will have a huge celebration! Wade and I are trying to make the decision whether or not to have the dead tumors removed from her lungs. A chest surgery is really hard on Kaelyn. Her surgeon wants to do the surgery, but her oncologist doesn't think it would be worth the risk. So we are trying to education ourselves on what would be best for her. We have our paperwork in for a second opion from a different hospital and are working on getting the paperwork into St. Jude's Children's Hospital for their opinion and any suggestions. It is a difficult decision so we just want to have as much information as we can before we decide.
We are in the hospital right now for a routine drain change. But we should be able to go home tomorrow.
We are all looking forward to our upcoming trip to Utah. It will be a great break for us all.
Love,
Angie
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