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
