New Plan

How quickly can things change between posts? On Monday of this week we had a joint meeting with Kaelyn's Oncologist and her transplant surgeon. The purpose was to clear up any differences between the two services. Our Oncologist had heard from the liver people that Kaelyn was still in the running for a new liver - where as we had heard that she was probably going to not need another transplant. So we went into the meeting with some questions. Dr. Healey (transplant surgeon) said that if she was a "normal" transplant patient without any other issues (cancer) that she would have already had a retransplant or at least be on the list for one. The reason being that her bile ducts are so greatly damaged. But because of her lung mets she is not elligible for retransplant. The plan for now (which can always change) is to see how Kaelyn does on her two weeks off that are coming up and test her AFP after that. If it has remained stable we will go in and have Dr. Healey remove the lung mets. If the result comes back that there is no viable tumor in her lungs then we can go into a waiting period to see if her cancer will come back within a set amount of time between 6 months to a year. If she can stay cancer free for that period of time with a stable AFP than she can be relisted for another liver. If it does come back with viable tumor left we will continue on treatment and just manage the liver as best as we can with the drains. We will also have the added knowlege of whether the cancer is in fact still viable. It is a scary prospect to take her off of her chemo, but if it will result in a new, healthy liver it is worth it. We knew that the time would come that we would have to take her off treatment, and that time may be soon.

Please just pray for our angel that she will recieve the miracle that is needed for her. I am not sure what that may be, but I know that God has a great plan for our little girl. I know what I want to have happen, but I put my trust in Him.

Love to all -

Angie

Kaelyn's one year transplant anniversary!

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

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

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

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