Doing good...

Hello all!

I do apologize for the long interval between posts. It has been a very, very busy two months.

Kaelyn did have her lung surgery on the 16th of December. The surgery itself went as expected. Dr. Healery removed two nodules and the old staple scar from her previous lung biopsy. He felt that if the cancer were to come back that the old staple scar would be a prime place for it. Kaelyn was in the ICU for two days post surgery and then moved to the regular surgical unit for three more days. Lung surgery is so painful though, so she was in a lot of pain until we could remove the chest tube. As soon as that was removed 4 days post surgery she felt so much better. The pathology report from the biopsied nodules came back not as clear as we hoped. One of the three came back with viable tumor. That was hard news for Wade and I, we both felt that since her AFP was so low that the cancer would be gone. But, we take comfort in the fact that it was removed and thus is no longer able to grow or spread.

When we got home, we all went through a bunch of colds it seemed to take us the rest of the month to get better. But Christmas was so much fun! The kids just glowed all day. They both think that Santa is their favorite person in the whole world! We also were blessed with the kindness of others - people who are anonymous donated so much to our family during Christmas. It was very humbling and inspiring. It was definitely a fun couple of days. Kaelyn still asks when is Christmas coming back!

We then had three drain changes in three weeks. It was a little exhausting for all of us, especially Kaelyn. I think this last change has worked for almost two weeks now, so hopefully she will get a break from the hospital scene.

The other fun thing we have experienced this month was Kaelyn's wish being granted by the "Make-a-Wish" foundation. It was so much fun. They came last friday with a limo at our door to take us on a transportation extravaganza! They brought us to Kenmore air to take a ride around Seattle in a Sea Plane! That was quite an experience!! Kaelyn and Jacob both really enjoyed it. Our next destination was to take a ride on a 60 foot yacht with all of the amenities! It was a beautiful boat and the captain let all of the kids take a turn driving - that was a little hair raising at times! The kids got to stand out on the back deck of the boat and throw crackers to the eager seagals. Kaelyn talks about that a lot and laughs about the seagulls. Our last stop was a rowing club on Lake Union. We had a pizza party there and the kids all got little goody bags, we also got to go row on the trainer boat. It was very fun. Our final suprise were many different gift certificates for things like a train ride, the zoo, a trip up the Space Needle with dinner included, the Pacific Science Center and and IMAX movie. It was so overwhelming and suprising! We are going to be busy for a very long time!

Well - I hope this post finds you all well and happy. I am going to try and post some pictures of Kaelyn's Wish soon. Love to you all!

Angie

AFP Stable!

Well, Kaelyn's AFP is still stable at 0.9 after 2 weeks off of chemo! It is very exciting. She is going to have one more week off because she is being treated for C-Dif, which is when antibiotics have killed all of the good bacteria in the bowels and the bad bacteria has taken over. It causes horrible diarrhea and cramping. Luckily Kaelyn is doing much better now that she is on a new antibiotic that replaces the good bacteria in the bowel.

Because Kaelyn's AFP is stable we are going ahead with the thoracotamy (removal of the lung tumors). We talk with Dr. Healey on Dec. 5th to discuss the surgery and what to expect. She will have one more week of Chemo and then on the 16th of December will most likely be the surgery. If the nodules come back with no viable tumor we will go into a waiting period of about three months with no chemo to see what her AFP will do. If it remains stable Kaelyn will then be placed on the transplant waiting list to receive her second transplant. We are also going to explore the possibility of have a living/related transplant to cut down on the wait time on the list. I know that Wade and I are willing to donate if we are a match to our girl.

So our December is going to be a full month that's for sure! The kids are very excited for Christmas and talk about it nearly every day! Jacob is still enjoying Kindergarten to the fullest! He is learning so much! He can sit down and write the whole alphabet without any help and he just starting to learn to read simple words. It is so amazing to see how fast his brain can learn new concepts and soak up so much new information. Kaelyn is speaking so well now. She sounds like a little adult! She loves to make up her own songs and sing them all around the house.

We sure love all of you out there and wish you all a very happy Christmas.

Love,

Angie

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