So here’s what’s happened in the past few days. Last weekend Kevin started to feel much sicker, and the change seemed rather sudden. He felt tired and needed to rest most of the day and also felt nauseous, although he wasn’t throwing up a lot. By Monday he was so worn out that he decided to call in sick from work. By mid-day I put my foot down and told him I wanted to take him into the infusion center for fluids, hoping that that would at least help some. We called our doctors and they said to come in right away and that they wanted him to have some blood drawn for labs before starting his infusions. We got a babysitter and headed out, all the while praying that we would get a call SOON from the NIH saying his TIL was ready, because we were sensing that we were running out of time. And just ten minutes later, while we were driving to Emory, we got the call! TIL had grown and he was going to check in the next week to start his treatment. I offered huge praises of thanks and relief, trusting that NOW everything would be okay.
Once we got his labs done, I got Kevin settled into his favorite vinyl lazy-boy, covered with a heated blanket. They got his IV going and started him up on fluids and worked on orders to get him some nausea medications as well. About 20 minutes later, our nurse from oncology came downstairs to speak with us. She said that Kevin’s liver numbers were NOT good. In fact, they were about five times what they should have been. This was a very bad thing, and so she said to hang tight until we figured out what to do about it. We called our NIH doctors to inform them and ask what they wanted us to do. After looking over the numbers, they sadly informed us that he would no longer qualify to do the trial. And they also offered no advice on what to do next, since they no considered him no longer their patient. Without knowing what was going on next, we finished up fluids, prayed, called friends, and then finally headed home. Our Emory team called and asked him to come in the next morning for more labs for comparison and also said that they’d be scheduling scans for as soon as possible this week to find out more of what was going on.
That night Kevin spiked a 101 fever and it continued throughout the night, finally coming down to about 100 degrees. This may or may not be related to his liver function. The next morning we went in again for more labs. We brought the kids this time, thinking that it would be a quick, non-scary way for Jude especially to conceptualize what was going on. It was a little tiring lugging two kids into the clinic and making them wash their hands ten thousand time and trying to keep them from spreading germs all over the furniture, but it was worth it. The guy doing Kevin’s blood draw invited Jude in to “help” him with his Daddy. Jude watched and helped pick out Daddy’s armband and the tech explained everything that was going on to Jude. Then we packed everybody up and headed back home. We fed the kids lunch and put them down for an early nap, because we were so worn out from exhaustion, sickness, and the emotional roller coaster we were on.
Right after we’d gotten the kids down, Emory called. Our nurse said that Kevin’s levels had continued to rise substantially and that they would like him to come back right now if possible to do a hepatitis screen. We all knew that hepatitis was extremely unlikely, but it had to be ruled out as quickly as possible. Since Kevin is sometimes overwhelmed with waves of nausea out of the blue, we knew it wasn’t a good idea for him to go by himself. A quick post to our neighborhood’s Facebook group and within minutes we had someone to drive Kevin back over while I stayed home with the kids.
Today we are having scans conducted all day, three sets! And of course our insurance wouldn’t authorize them, seeing as there was less than a three day turnaround for the order. So of course we had to sign a waiver saying that yes, we would pay the twenty some thousand dollars that all the scans would cost if insurance didn’t pay. So we know that will be a fun battle with insurance coming up. We also had an appointment scheduled with Dr. Carlson, our surgical oncologist to see if liver surgery was an option. And in the midst of all this, Kevin was called and asked to another set of labs and I was busy getting CDs of all of the scans so I could fedex them to UCLA for a second opinion on how next to proceed. It’s been a wild day and we’re exhausted, still waiting for answers. Will keep you posted.