Re-evaluation at UCLA

We headed up to UCLA a little after noon today, and arrived in LA early. So, we got a chance to drive around a bit (plus Carter was sleeping in the backseat and we didn’t want him to wake up yet). It was a beautiful day, and we loved driving around the tree-lined streets of Beverly Hills and checking out all the houses.

Once we got to the hospital, they wanted to check Carter out a bit (height, weight, etc). Then, the doctor came in and spoke to us and asked if we had any additional questions. I whipped out my list of questions, and these are things that have been keeping me awake at night. Of course, they all laughed because it was mostly timeline questions. We asked things like, “when will Bennett and Carter be able to share a room?” This is something the boys had been looking forward to once Carter turned 2 (which obviously didn’t happen because Carter started chemo). The transplant team had told us early on that Carter cannot be sharing a room with anyone during this period. The doctor did say, maybe in about 6 months post-transplant. We also asked if we’ll be able to use our tickets to Maui (which we had to cancel last month) next summer (since the airline is giving us one year to use them). The doctor said yes! Other questions were whether or not Carter can start preschool in a year and if he can take swimming lessons in a public pool next summer. She said yes to both questions, which was nice to hear. We have to get through this, and then we know life will go on.

We also talked to the doctor about Carter’s AFP levels being so low and if this is “normal” for cancer patients going into transplant. She said it’s like real estate (which is our language) the numbers don’t matter as much as location, location, location. We also explained our frustration that chemo has broken Carter down so much and if we were going to do a transplant, why did we have to put him through all of this first?! She said the chemo is significant in controlling the tumors. If you go in and do surgery to an actively growing tumor, you have tremendous risk of spreading. All her explanations made perfect sense, and it was nice to hear the answers.

The main reason for this re-evaluation was for them to see Carter before his status on the liver transplant list is moved up. Once he is on the list for 30 days, they will change Carter to a status 1B. This will open up the database to the Stanford and San Diego transplant centers as well. The only people ahead of Carter on the list then would be people with less than two weeks life expectancy. They have let us know things usually move pretty quickly once the status is changed, which will be Friday this week. They also told us there may be more false alarms as well. Good to know! We’ll hope for the real thing soon!