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