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
