Lighting The Way
The meeting with Dr. Yamashiro was really…encouraging. There was some kind of screw up and Ana wasn’t actually on the schedule, so he was rounding in the hospital when we got there. I was impressed with how fast they tracked him down. He showed up about 30 minutes after the scheduled time. He has a Physicians’ Assistant working with him named Leah, who is the counterpart of Dr. Martinez’s PA (Tara). The PAs keep things running and act as essential patient/doctor liasons (they write scripts, help set up tests and procedures and get messages to the doctors quickly). So, it’s really comforting to know she’s there for us (and she was really nice).
Dr. Yamashiro is incredibly patient and soft spoken. He sat with us for over an hour answering our questions (no matter how crazy they seemed) and getting to know all of us. He does believe this is IMT, although some of the pathology is still pending and they didn’t retest for IMT. There is a full genetic analysis currently in progress. They are checking for many things including a mutation in a specific gene – the ALK gene – which is associated with IMTs about 50% of the time. All of Ana’s pathology reports have come back ALK-negative, but it can be very difficult to detect this mutation. This is important because there’s a drug that’s very effective in shrinking IMTs which are ALK-positive (so this could be a big piece of the puzzle). In my heart, I don’t think this is ALK-positive IMT because the tests have consistently come back negative, but genetics are weird and testing for this specific mutation is tricky. So, we’ll need to wait and see.
We asked how the tumor could possibly spread and come back – two things we were told were extremely rare. Dr. Yamashiro thinks that there were likely tumor cells left over after the transplant and they “seeded” in the abdomen and lungs. The blood flow goes from the liver to the heart to the lungs and the tumor presentation in her lungs was consistent with this hypothesis. Also, Dr. Martinez (we dropped in to see her), said that the smaller nodule in Ana’s Abdomen was in the exact spot as her original liver biopsy and she suspects the biopsy itself may have displaced some tumor cells into this part of her abdomen. The larger mass wasn’t actually in her liver (meaning, the new graft was healthy and safe), but sitting just outside her liver which is consistent with this theory as well. It’s just impossible to get every single cell – one of the reasons they do chemotherapy after surgery.
This is not considered an aggressive or fast growing tumor/cancer. Dr. Martinez said that we would’ve seen a recurrence a lot sooner after transplant if it was (about three to six months). That was a relief, but doesn’t change the fact that it’s there and they still don’t really know how it’s going to behave.
What are the next steps? Basically, more waiting. It can take a few weeks for the full genetic analysis to come back. Dr. Yamashiro is also going to talk to the surgeon (not Dr. Kato) about removing the largest mass from Ana’s chest. It’s larger than I realized – 1.7 cm and in the upper left portion of her lung (near her heart). She’s scheduled for another CT scan on 3/7. At that time they’ll determine if the Celebrex is working and keeping the tumor from growing (Dr. Martinez doesn’t feel the Celebrex will shrink the tumor. She just wants to see that it’s stable).
So, at this point, the treatment plan seems very similar to what it’s always been – surgery. The pathology may change this though. Either way, we absolutely love the teamwork between Dr. Yamashiro and Dr. Martinez. They have a lot of experience working closely together in treating children with hepatoblastoma (liver cancer). Ana’s cancer is very different, but it’s still important for the doctors to take a team approach. We left the hospital feeling very optimistic and in a much better (mental) place than we were last week.
One final note – there was a glitch with getting Ana’s pathology reviewed by that doctor in Boston. I guess it’s pretty unusual for parents to take it upon themselves to get the pathology sent to an outside institution, so they didn’t even try to process this through my insurance. The Boston hospital is also out of network. Bottom line, I have to pay for this myself. Luckily they’re giving me a bit of a price break and it will only cost me about $500 (not cheap, but not the thousands I’d feared). The pathologist started processing everything today. We should have results next week. I may just be buying peace of mind, but you never know.
Here’s a shot of us literally disappearing into the sunset (and onto the traffic-clogged Tappan Zee Bridge) after our very long day.