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