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

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

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

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

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

AFP 7.8

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

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

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

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

Disneyland Pictures!

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Disneyland and other things

I am sorry it has taken me so long to write after our Disney trip. I think my mom is right when she said that I am still living in the Disneyland glow! We really had a good time. Jacob has said that he now wants to live in Disneyland. He loved all of the fast rollercoaster type rides, he is such an adrenaline junky!! It was so fun to see him have such a good time. It took Kaelyn a couple of days to get used to all of the lights and sounds of the park, she was pretty overstimulated. But by the last day, she had a really good time. She really liked the "It's a Small World" ride and the "Dumbo's Flying Elephant" ride. It was a good vacation, but it was also a lot of work! We are glad to be home, though we loved the fun we had.

I want to thank everyone who was so kind and generous in sending us donations to help pay for our trip. We actually received enough funds that we had very little out of pocket expense. It was such a surprise when we started receiving all of your kind gifts in the mail and from Wade's co-workers. We were in a little bit of shock I think! Anything that is left over after paying for our trip is being put into an account that is designated only for Kaelyn's care and emergencies. You all have given us such a wonderful gift, not just the money, but the knowledge of how many people are out there who care about us and our Kaelyn's well-being. Thank you again! I wish I could thank everyone in person and give you all a great big hug.

I can't put any pictures up from our trip in this post, because we are in the hospital with Kaelyn. So I will put some up in a future post. Kaelyn was supposed to start her Chemotherapy on Monday of this week. But when we went in to start, her labs came back with an elevated white blood cell count so our Oncologist didn't want to start therapy, nor did I. The next morning, Kaelyn woke up with a fever and we brought her into the ER. She has an infection where in her bile ducts, most likely from the biliary tube. She has been on some good antibiotics and went in yesterday for a new tube to be placed and for them to look at her biliary system to make sure that there is no blockages. We were really nervous, because the last time we did a surgery like this was when she went into septic shock. Thankfully, she came back from surgery yesterday healthy and well. They were able to place a new drain, the old one had a blockage in it and her biliary system did not have any blockages. So, we are currently giving her IV antibiotics to make sure she will fully recover from her infection and will probably start her chemotherapy on Monday.

Thank you again for all of your love and support through this time. We honestly gain strength from your prayers and concern for us. I know you all want to feel like you are doing something to help. You are. Just keep praying and thinking of us and our children. We love you.

Love,

Angie

Kaelyn is home, and we are off to Disney!

Hi everyone!

We were able to take Kaelyn home yesterday. She is doing fine. She does have a bag on again for her bile to drain externally, but she is feeling much better. We are going in for an ultrasound tomorrow to see what is going on with her bile ducts.

We are going to Disneyland next week! We leave on Monday! We are all very excited, especially Jacob. I will make sure and take a lot of pictures and then I will post them here for you to see.

Love to you all!

Angie

Well, we were able to take Kaelyn home on Saturday. She absolutely loved being home. She ran around and played with everything and everyone! But, unfortunately, on Sunday she was having some pain and swelling on her right side. So, we took her to the ER and they admitted us. Atleast we were able to have 24 hours of fun at home. My parents were visiting from Utah over the weekend, so it was nice for them to be able to see her out of the hospital, even though it was for a short time.

They are going to let us go home today though. Which was a suprise to me! I am very excited. They think that her pain and swelling was from her biliary drain backing up some. We have it clamped so it was exclusively draining internally. But now we have a bag on again so it will drain both internally and externally. It has seemed to solve the problem for now. We are going to try and clamp it off again on Sunday and then come in on Monday for a clinic visit with the transplant docs. I am sure we will discuss a more permanent option at that time. We may have to place another stendt. But we will see.

We are still trying to plan our Disney trip for the first week in April. We had to hold off on getting tickets becuase they wouldn't insure our trip while Kaelyn was in the hospital, so hopefully today we will be able to book our trip!

We love you all!

Angie

One biliary drain out!

Today they took out the old biliary tube. It only took them about 15 minutes and she did not need any sedation. So far so good, no evidence of any bacteremia like last time. I was a little nervous when they took her to do the procedure, but all of the docs assured me that it would most likely not happen because she is on so many IV antibiotics. I think she will be fine. It will be nice not having two drains to worry about. Tomorrow I think we will clamp off the external part of the new drain and see if it will just drain exclusively internally. That is the goal. If it works, we won't need to have the big bag hanging off of her any more. Even though she does look awfully cute carrying it around in her cure little Hello Kitty pink backpack!

Well, the meeting with all of the docs yesterday went well. I think we cleared up a bunch of our questions. The liver is in good shape to handle the chemo, we really shouldn't have any problems with the livers function. And we decided for sure to start the Irinotecan chemotherapy on the 11th of April. It will be pretty intense, more than I thought. She will be on for 5 days, have two days off, on for 5 more days and then have two weeks off. We will go through 2 courses of this and then rescan and check her AFP. If her tumors look responsive to the treatment we will continue, if they are not, we will reconsider treatment. There are other chemos we can try, but they produce much worse side effects and require a whole lot more time in the hospital. But we will just pray that the Irinotecan works.

We are thinking we will go to Disneyland the first week in April. That will be so fun for us all I think! We are all very excited. It will be good to enjoy our children well and happy together.

Love to all,

Angie

Out of the ICU!

Kaelyn was transferred out of the ICU yesterday about 3:30pm. We are now back on the surgical unit in a much quieter environment. She is resting comfortably and all of her vitals are stable and well. She is on a whole lot of drugs so she is very sleepy. We are weaning her off of the sedation and IV pain meds today, so hopefully tomorrow she will be more lively and herself.

We are clamping off the old drain to see if the new drain is working properly. If it is, I think they will take out the old drain tomorrow. The docs all assure me that there is little chance of her going into septic shock again from this procedure because she is on three different IV antibiotics. I must admit that I am a little nervous about them going in there again. But I also trust Dr. Healey and I know that he knows what he is doing. Taking the drain out is very simple, they will do it in her room, so really it should be fine.

This afternoon we are meeting with both the oncology people and the liver people together. I am very excited about this, so we can get things straight on her treatment and the effects on the liver. So, I will let you know the outcome of that meeting soon.

Love you,

Angie

Day 4 in the ICU

Kaelyn is doing much better today. We think that she will be able to be extubated (breathing tube taken out) today. They have just about weaned her completely off of her blood pressure medicine and she hasn't had a fever in a couple of days. It will be so good to be able to have her talk and be awake again. They have had to keep her pretty well sedated while the tube has been in.

She will probably stay in the ICU 1 or 2 more days for observation, to make sure she is stable. Then we will be transfered back to the surgical unit for a few more days. Hopefully by the end of next week we will be able to go home.

After Kaelyn has had some time to recover, we have decided that we are going to take a short family trip to Disneyland! We are getting very excited, Jacob especially. The hospital has very generously offered to pay for some of our expenses like park tickets and our hotel stay. We were pretty shocked when our social worker came in and gave us that news! We are very thankful.

And then, when we get back, we will start Kaelyn's chemotherapy.

Kaelyn's has definitely been blessed with angels surrounding her these past few days. I think the reason she is getting better is that everyone acted so quickly, and I believe that we were all prompted to do so by our loving Father in Heaven. He is watching over us and know of Kaelyn's suffering, and I know that He is blessing her and our family.

Love to all,

Angie

Kaelyn in the ICU

First of all, Kaelyn's stent placement (internal drain) was a success. They were able to get through from the bile ducts to the intestine. Unfortunately, when she came back from recovery she had a fever of 104.5 and very low blood pressure. She was rushed into the ICU and started on blood pressure medications among other things. She also was intubated (breathing tube placed) to help alleviate her body of any unneccessary stress. The docs think that she has a blood infection called bacteremia and this caused her to go into septic shock. They also think the infection was caused by the stent placement. We think that there was some bacteria in her bile that was stirred up with the procedure and it entered the blood stream. She is currently on 3 antibiotics that will help her fight the infection. She also received two units of blood last night. She is currently stablized with the medication, but still having a fever of around 101. We have tried to start to wean her from the meds, but as we do this her blood pressure starts to drop. The ICU Docs seem to think that she will need to remain in the ICU for atleast 7 days.

It was a terrifying day yesterday, but today is better.

Love,

Angie

Final Pathology

Dr. Thomson came to talk with us yesterday after the Tumor Board meeting. The pathology report does confirm that this is a relapse of Kaelyn's hepatoblastoma. The good new is that it has not spread back into her liver and it has not reached into her bones, it seems localized in her lungs at this time. The tumors are very small, about bean size. We have really only three choices for Kaelyn's treatment. One, is to do nothing - which is not an option for us. Two is to go through chemo with a drug called Irinotecan that is fairly new and causes horrible diarrhoea, but is hoped to provide less time in the hospital. Three is to hit this very hard with a drug called doxirubin, this chemo would give her many horrible side effects like mouth sores and vomiting and we would also be in the hospital a whole lot more. There seems to be no difference in the effectiveness between Irinotecan and Doxirubin just more side effects and hospital stays. Even after treatment the doctors prognosis is that she has less than a 10% chance of the cancer going away and staying away long term.

Her liver also comes to play in her treatment. They are going to try and place the internal drain today. Hopefully they will be successful. If her liver cannot process the chemo, we will not be able to treat her. Right now though, the transplant docs have said that her function in good and she has a good chance that it will process the chemo. But we have to get the external drain out, because it is a big risk of infection since it provides a break in the skin.

Wade and I have decided to go with the Irinotecan drug. We will see how she does on it and how her liver handle it. The oncologists say that she could be on it as long as it takes to get her AFP down to a normal level (below 10, it's at 48 right now) and to get a couple of clear CT scans. That could be up to a year. We are hopeing that since we have caught it so early that it won't take us that long.

We really want to take a family vacation before we start Kaelyn's treatment. If any of you have any ideas on a place to go that is good for young kids and relaxing, I would love to hear them. We really need to go within the next two weeks though.

I also wanted to mention how much we appreciate all of your prayers and fasting on our little Kaelyn's and our behalf. Yesterday when we heard the results of the biopsy and Kaelyn's options Wade and I felt very calm and at peace with our decision. I know it is a blessing sent from our Father in Heaven. We have a knowlege of our eternal life together as a family and this time on earth is only but a moment of eternity. No matter what lies in our earthly future, our eternal future is bright and beautiful.

Love to all,

Angie

Preliminary biopsy results...

Well, it is not good. From the preliminary pathology report it looks like Kaelyn cancer is back. Her biopsy went as planned, but she is in a lot of pain. I guess anytime you meddle with the lungs, it is pretty painful. She is doing better this morning than she was last night, but deffinitely not herself.

Here is the plan for the next week. She will go in for a chest x-ray this afternoon and if that looks good they will take out her chest tube (that was used for draining the biopsy site). Tomorrow we will just let her rest and recover. Monday she will go through a series of tests to check her heart and kidney function. Tuesday she will most likely go through another attempt to place the internal bile drain. It is imperitive that we get this working. If we cannot get the liver functioning well she will not have many choices for chemotherapy. Most of the chemo used is cleared through the liver. If the liver cannot process the drug it will stay in the body and cause a whole lot of nasty things I don't even want to think about. Also on tuesday the tumor board will meet to discuss Kaelyn and treatment options - the final pathology results will be in by then.

Dr. Thomson, Kaelyn's primary oncologist, stopped in to her room last night and talked with Wade and I. The treatment of recurrent cancer is far more intense and because of this more side effects will come. The treatment will probably take about 6 months to complete. She also talked about how if the liver will not tolerate the chemo, we will not have many options. It was a very hard night last night. But Dr. Healey, Kaelyns transplant surgeon, was a bit more optomistic for the liver. The livers function itself is good. We just need to get the bile draining more adequately to alleviate the inflammation and possibility of infection. So he gave us more hope. She will be highly suseptable to infection and virus' because of her immunosuppression and then adding chemo on top. I am sure we will be in the hospital a whole lot more this time around.

There is so much information that was given to us. I will update as often as I can to keep you all up to date on her progress. This sunday, March 6, we will be holding a special fast for Kaelyn. If you would like to participate. Please keep Kaelyn in your prayers. I know that God lives and he loves us. I also believe that miracles still exist and can be granted if it is His will. This is my prayer, that Kaelyn will be given a miracle from her loving Father in Heaven.

Love to all,

Angie

Biopsy Scheduled

Kaelyn's lung biopsy will be on Friday, March 4. They are also going to try and place the internal bile drain at that time.

Love to all...

Angie

Latest CT Scan news...

Kaelyn went in for a CT Scan today. Unfortunately they saw two little nodes on her left lung that were not there before. The plan right now is to do a biopsy and see what the results are. I don't know when the biopsy will be done, but I am thinking it will be soon - probably within the week.

Her AFP (alpha-feta protein) levels have been going up, which is a sign that this may be a relapse of the lung metasteses. Please keep our angel in your prayers.

~Angie

Update on Drains

Well, unfortunately the internal drain was not able to be placed. Kaelyn's bile duct walls are too thin in result of the inflamation and a possible infection. The external drain is still in place and they will retry the surgery in a few weeks after her ducts have a chance to strengthen up. If they are still not successful with the interventional radiology method (inserting the tube with the guidance of ultrasound) they will possible do a more invasive surgery to try and place the drain. Hopefully the next time around all will go well.

We have been in and out of the hospital a lot in the past few weeks for various reasons, but Kaelyn is doing very well. She seems to feel pretty good. And she looks awfully cute carrying around her bile bag in a pretty pink Hello Kitty backpack! What an amazing girl she is!

She also is featured in an ad campaign for Seattle Children's Hospital. Her mug is on the home page of www.seattlechildrens.org. If you click on the link next to the picture it will bring you to a larger version of the photo. The man with her is the head of the transplant program at Children's and is very involved with her care. It was pretty fun have her in her first "model" shoot! She is deffinitely a natural, as long as her pacifier is alon for the ride!

Love to all,

Angie

Promising News...

Hello everyone,

This past week Kaelyn has undergone two surgeries to place drains into her bile duct system. Right now they are internal/external drains, meaning that Kaelyn has a tube coming out from her tummy area draining into a bag. On Wednesday, Feb 16 she will go back in for another surgery to try and place an internal drain from her bile ducts directly into her intestine. The surgeons have given us promising news about this. They are hopeful that we may be able to save her liver and not have to go through another transplant! That is the most wonderful news! They think that the liver function has been hindered by the dialation of the bile ducts, and ever since the drains have been placed her numbers have been getting better and better. So, if we can get this internal drain to work properly to reduce the inflamation and blockages in her bile ducts she will not have to have another transplant! What a miracle sent from our Father in Heaven. He is watching over our daughter and sending blessings in all forms.

We will update after the surgery on Wednesday. Love to all!

Angie

Biopsy Results

Good News! No sign of infection or rejection taking place in Kaelyn's liver. They think her elevated labs are in result of continued deterioration of the bile ducts. Which in itself is not good either, but is a whole lot better than rejection or infection. Kaelyn and I are back a home now, thank heavens we only had to stay one night in the hospital.

Love to you all.

Angie

Liver Biopsy

This week has been a huge whirlwind of emotions and events. On Monday we went into our normal clinic visit and all seemed well. That evening we received a call from the surgeons. They said that Kaelyn's potassium level was very high and they wanted her in for labs the next morning. They also warned us that a high level could cause seizure or black outs and at worst cardiac arrest. Needless to say we did not sleep well that night. Her potassium level was fine, it was just a lab error, but her liver function results had skyrocketed to almost double what they were last week. So, we recieved a call on Wednesday afternoon telling us that Kaelyn needed to come into the hospital with in the week for a liver biopsy to test for infection or a possible rejection episode. That brings us to today - Thursday. We came into Childrens early this morning for an ultrasound - we have not heard official results of that yet, but it looked about the same as previous ultrasounds, some slight blood flow noted into the liver from the hepatic artery but not much. Then it was off to surgery for a biopsy. This in itself is not too invasive, they just a use a hollow needle to exact some tissue from the liver, but Kaelyn was fasting, had no nap and was very cranky afterward. She didn't handle the anestesia well, vomited and also had a bad bleeding episode after taking out her IV. She is finally asleep now, and peaceful. We will be staying the night here at Childrens and will hear the results of the biopsy tomorrow afternoon.
I will place an update tomorrow after we hear the results.

Please keep Kaelyn in your thoughts and prayers. She is so precious and now that she is older and has tasted freedom the past two months she does not want to be here at all. I don't blame her, either do I.

Love to everyone,

Angie

January 3, 2005

I need to apologize for not upkeeping the blog over the month of December. With our move and all of the holiday hustle and bustle we just didn't get our computer up and running until this past weekend.

Over all though it has been a wonderfully uneventful (hospital) month for us. Kaelyn has not had to be admitted to the hospital for almost two months. She is doing so great! Kaelyn herself has not been uneventful though. She has learned to walk!!!!! What a wonderful Christmas present for all of us! She is just toddling around now, getting into anything and everything. It is so cute watching her short little legs shuffle around. What entertainment! She also has been working on a head of hair. It seems to grow some every night! Her eyebrows are dark and very full and her head hair is, I think, going to be a light brown color. She looks so great! She also has surprised all of her physicians. On her last clinic visit Dr. Healey confided in me that he thought she would be having serious problems by now with the bile ducts. He figured she would be having infection and jaundice and be heading for her second transplant by now. But, as far as we can tell at this point she is well. Her labs are stabilizing some, still high but not climbing any higher and her health has been amazingly well. So, for now the plan is to still have her listed but not accept any organ offers until something changes in her health or her labs start to sky rocket upward. That was wonderful news to us! It sure has been a good month. I believe that we have been blessed with the miracle of a little more time. What a blessing!!

Jacob sure has had a great time having us all together too. We all had a marvelous Christmas. I think we all needed the time to be together without the looming threat of hospitalization. It was just wonderful. We also are just loving our new home! It is so great that Adele (Wade's sister) lives just two doors down. The kids are having a great time with their cousins and I love having the company during the day. It is also very comforting knowing that Adele is their to help us when the times get tough. She is wonderful!

I hope all of you had a great Christmas season. We sure love you and I am going to try to keep the site updated more often now that we have our computer up again.

Love to all,

Angie

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