We have anxiously been awaiting the next steps for Seth. As part of determining how to proceed a GFR kidney study and MRI's of the brain, spine and abdomen were ordered.
Tuesday Seth had the GFR study to see how his left and only kidney is functioning. This is pretty much an all day affair arriving for the die injection and then having to return for 3 blood draws later in the day. We arrived early and Steve headed back with Seth for a peripheral IV to be placed for the die and his port to be accessed. It seemed like they were back there for a very long time but once they came out we headed up to the 9th floor to see our favorite nurses and use the playroom to fill some of the waiting time before blood draws.
We finished up and were home around 3:30.
The next day we headed in early again for the MRI of his brain, spine and abdomen. On the way in we got a call from the Jimmy Clinic that Dr. Wright wanted him to get some fluids after the scan so we should head over there when he was done. We were a little early so we headed upstairs again to the 9th floor to deliver a few pictures of Seth that the nurses had requested for their break room. He was scheduled to arrive at 9:30 for a 10:45 scan. He didn't get taken back until about 11:15 and the scan was supposed to last about 2 hours.
Now that Seth is 1 a parent typically goes back with the child to reduce separation anxiety. I got all dolled up in scrubs (not as comfortable as I thought - and certainly not flattering) and headed back with Seth. He was given a little propofol and was off to sleep.
We headed out for lunch and returned to the waiting room about an hour later. We always know these things can take a little longer than expected but at the 3 hour mark I finally checked in with the receptionist and was told he was still in the scanner. This was concerning but we thought maybe it was just taking longer to get the needed scans.
A little while later we finally went back to the recovery room where Seth was already awake and picking at his port dressing. Back to his usual self! The fluids had been started so we needed to hang out for an hour before heading over to the clinic. We played, got dressed, and start him on a feed since he hadn't had anything since 6:30 that morning.
Around 4:30 we headed over to the Jimmy Clinic, checked in, changed the usual explosive diaper upon arrival, got vitals taken, and waited to be called back.
Dr. Wright met us in the exam room and I could just tell by her face something was wrong. First the brain has remained stable and hasn't started to grow even though it's been weeks since receiving treatment. However, the kidney tumor has grown back in the space his right kidney used to reside in and is already half the size of what was removed, he also has mets in his lungs that are too numerous to count, and there is a concerning spot on his T5 vertebrae. This is why the scan took so long. The radiologist saw the spot of the spine and expanded the images to include the chest. This has all happened in 2 weeks!! How and why does this keep happening to Seth!?!?!? If you saw him you would never even know because he looks amazing and everyone, medical staff included, always tells us.
Radiation at this point wouldn't help because of the size of the tumors. Due to the amount of measurable disease Seth qualifies for the Atezolizumab clinical trial that we have been waiting to start but now also the ezh2 study. Seth isn't able to start any of the clinical trials until he is 4 weeks post op so we have about 1.5 weeks left to go. We are trying to get things lined up so he can begin as soon as he meets the 4 week qualifications. The Atezolizumab study is believed to be promising and our best option at this point for more time with him.
Dr. Wright did mention they are concerned about the lungs and Seth's respiration as the disease progresses. We discussed the options as things progress including being home, a hospice house, or on 9NW for his final days. At this point we have a lot of things to consider. First and foremost what is best for Seth but also Sadie and how this will all effect her and how we help her through it.
We are hoping the clinical trial will keep the disease at bay for a little while but with the rate it is growing we just don't know. Why his brain responded so beautifully and the kidney is taking off like wild fire are unknown and may be something the doctors take a look at later, comparing the two tumors and there differences even though they are both ATRT.
For now, we are home and enjoying as much family time as we can along with visits from friends and family.