Yesterday and The Plan

Yesterday morning we had to be at the hospital at 7am.  Because I'm a doctor at our hospital, we got special treatment:  instead of having to wait in the radiology waiting room and then get moved to a room, they admitted Finn directly to a room on the pediatric floor, so my parents and I had a comfortable place to wait.  Of course, radiology was behind, so Finn started to get hungry and sleepy around his usual 8am time.  My mom shocked me by being able to rock Finn to sleep, so when they came to get him for MRI he was sound asleep.  I held him and was wheeled in a wheelchair down to MRI, and met with the anesthesia team and the radiology techs before they took him from me and I was sent back upstairs.  Lucky for me he was still snoozing when I walked out of the room, so that was easier than I expected.

Charles, the radiology tech, had told me it might be about 1-2 hours total, and when it had been over an hour, he called up to tell me there'd be a delay and so they were just getting started.  Then an hour later he called again and said they were only halfway through the scan, and Finn's IV had infiltrated again, so they were behind.  Finally, around 12:30-1 Charles called and said they were done, and that it wouldn't be long before they were bringing Finn upstairs.  From the tone in his voice, and the fact that he didn't give me that, "I'm not supposed to tell you this, but everything looks good" that radiology techs often do, I knew they'd found something.

My parents waited around with me for a while, but then I decided to send them off to my sister's.  I love my parents, but they aren't really who I want with me when I'm anticipating bad news; I decided I'd rather be alone.  I got the call sometime after 3pm from the ophthalmologist - there's a 1.4 x 1 cm tumor near the spine that is extending to the top of the lung (but not in the lung) and a few other weird tiny millimeter sized spots in the spleen and kidney.  Within an hour a transfer to the Children's Hospital (the smaller one, that's not a teaching hospital, for the locals out there) was arranged.

Right after I got the news I called my sister, who made plans to meet us at the hospital, and then I called LB who did the same.  Then I called Lisa, another good friend who works at my hospital, and she dropped everything to come be with me.  In the midst of all this, my office manager Michelle texted me to find out how we were, and when she heard the news she headed over to be with us, too.  Michelle and Lisa decided I probably shouldn't be driving (which, in retrospect was a good decision), so Michelle drove my car to the Children's Hospital, while Lisa followed behind.  They stayed with us in the room until Jamie got there, and helped keep Finn entertained and keep me calm.

LB showed up a while later with Diet Cokes, milkshakes and sandwiches, and just after she got here, the pediatric oncologist came in (it doesn't seem right, needing a pediatric oncologist).  Dr. B is wonderful.  She is very optimistic and upbeat - in infants, neuroblastoma has a very high cure rate, and she stressed to me that I need to be optimistic, too.  LB is an ob/gyn, so she took notes and asked all the questions that I couldn't think to ask right then, but would have wondered about later, and Jamie played with Finn and tried to listen in as much as she could while she talked.  I don't think I would have managed to make it through last night without them here.

There are tons of possibilities as to what we'll do to treat this, but first we have to know exactly how extensive it is.  He had blood work last night - of course it was right after he fell asleep that they came to get it, but after the trauma of all the IVs they wanted the best of the best to draw his blood, and she got it in one stick.  He's already had a chest x-ray this morning, he will have an ultrasound to look at those questionable things in his abdomen sometime today, and Monday they'll send out urine to test for hormones made by neuroblastoma tumors.  We're probably going to be staying here for the week while they do other tests - he'll be getting a test called an MIBG later this week; neuroblastoma tumors light up with an MIBG, so that should give us a lot of information, and he may also get a bone marrow biopsy at the same time.

Once we have all that information, we'll decide on what to do next.

Finn is currently getting his usual morning nap in, and I'm thinking that while he's asleep is a good time to have a good, hard cry.