Monday morning after a rough night (I may have slept in the crib because we were in a double room and got a roommate) we anxiously awaited what the doctors would have to say as it relates to Seth's calcium. It doesn't seem to be clear what is causing it to be so high.
We spent a lot of the morning walking the halls and in the play room while waiting. The doctors bumped into us in the hallway and we headed back to our room. They said they still aren't sure what is causing the high calcium but he otherwise clinically looks well. They will try to get as much testing done today to maybe avoid some appointments later in the week and hopefully we could go home later today and manage the calcium from home.
Seth would be going for an abdominal ultrasound later in the day to knock that off the list later in the week. They were also going to be discussing Seth with the endocrinology team to see their thoughts on his high calcium and how to treat it.
He went down around 1pm for his ultrasound. We got a new roommate during this time so I met Seth and Steve on the 2nd floor. When the ultrasound was over we all went to the café to grab a quick lunch before heading back upstairs.
We were in the playroom when I saw Dr. Wright and Dr. Eng. I assumed they were looking for us because they were not covering the hospital this week and they were looking for a room to talk since we were in a shared room.
We went into a multi-purpose room and as soon as I saw they were waiting for Cori (a psychologist) I knew we were in for bad news. I said "it can't be good news if Cori is here" and immediately started crying.
Dr. Wright explained that the ultrasound showed a large mass in Seth's right kidney. This means this tumor grew through chemotherapy. The chemotherapy that would have been used to treat this tumor had it shown in his initial examination.
How this tumor grew when the one is Seth's brain has responded so beautifully to treatment is mind boggling to us. They believe it is not related to the tumor is his brain but a whole new growth of tumor.
This puts everything on hold for us. Transplant is no longer an option because he is no longer with little or no disease and what the future has is unknown.
The plan for now is continued testing to see what we are dealing with. They need to see if the disease is contained in his kidney or has spread elsewhere and discuss with the surgical team what the best plan will be. Right now we don't know what the future holds, there is a possibility that the disease has spread, and if that is the case it is unlikely Seth will survive.
For now we're asking everyone to be patient with us as we process the information we've received and think about what is best for our family as new information becomes available.