Black Fiday came and it was time to read the paper. Then Amir shared his fruit snack, a new favorite food, with Oscar.
After the morning madness was over, we took a family trip to Toys 'R' Us. Masud and Lyla went off to find something fun for big kids while Amir and I wandered around the front of the store looking at the little kids stuff. We found Snoopy early on and Amir brought him along for the ride.
Look, Snoopy! These trains are awesome!
We eventually ditched Snoopy and took a ride with Kermit while the big kids checked out. Lyla chose a LaLa Loopsy doll that eats and poops; great!
Sunday night we put up the tree and our stockings. Lyla's favorite meal combo is always a hit and Amir says "Cookie!" every time he walks by his new ornament.
Having decked our halls, Monday we set out for St. Paul in awful icy road conditions for an
MRI. Two and a half hours later we finally arrived. Thankfully we were still able to get the scan. We had been talking to the hospital along the way and many staff were just as late as we were. We had a nice visit with Ramone, a Great Dane while we waited. He was huge! Notice Lyla is in bed and the dog is the same height as her. I'm not sure i'be ever seen such a tall dog. After a long day, we headed home, I finished up some work, and we watched Charlie Brown Christmas while waiting for a call from Dr. Bendel. No such luck; I had to call Tuesday morning and ask for a report. I got it, tried to distract myself with work, and then we went to two classes of karate just because we could.
We went to the clinic Wednesday for the comprehensive clinic. Good news is that Lyla's primary tumor (most recent on the right) was ruled stable on the scan. I think it actually looks a little smaller and Dr.
Bendel agreed.
Not so good news is that they still don't know what the spots we found last time are. You can barely see them in the photo, but if you look at the center of the photo and then down and to the right just a little you can see a little "snowman shape". The specialty radiology team reviewed the scans all the way back and they saw what they are calling a lesion in the September and June scans for sure. There's a hint of it in March, but it's fuzzy. So what is it? They don't know. Good things we do know:
1. It doesn't light up with contrast, which means it's not tumor.
2. It looks very different from her primary tumor, so if it is something, it's not something spreading, it's something new.
3. It is highly likely not a neurofibroma. Even though the genetic tests came back negative for NF1, they can't say 100% that she doesn't have it, which means she may still have risk of NF tumors. Radiology agrees this does not look like NF1.
4. If it were to grow into something, it is in an area of the brain that is easily accessible for resection -- right there in the cerebellum! No need to dig through her whole brain like they did the first two times; isn't THAT comforting ...
5. Apparently lots of people have these, including several children among the staff of the clinic. They can be caused by all kinds of things and sometimes stay, sometimes, shrink, and sometimes disappear.
Our next scan is scheduled for six months out, which is my main reassurance that they don't think it's anything to be worried about. If they thought it was going to grow we would be going in at there months again. 6 months without a scan! That's the end of the school year. Whoa.
After a long week, we went to two more karate classes (where Lyla led the class, was called out for being the fastest, and broke a board three levels beyond her usual one), then came home to Robin Hood and chill. Worn out Sister makes a pretty good couch! And Robin Hood is very exciting ... Seize the fat one!
Today we went to Mom and Dad's. Lyla and Amir stayed with Grandma, who Amir now calls "Ama", while Dad and i went to see Ryan and the Elizabethan Syngers at the Union Depot Christmas Market. It was freezing but fun and very festive. We also found some treasures at the goodwill and had lunch at Arby's before coming home to some delicious cookies Lyla made and presented all on her own. Salted caramel cookies with orange juiced carrots for garnish -- they were awesome (for real)!
So that's the latest. The holiday season is officially here!
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