Steadman Family

What better way to end the year than with another photo of Ben.

Thanks again for your love and support. Have a happy and safe new year.

Ben had his MRI this morning and the results are better than we expected. The new lesion in his brain is nearly gone. His tumor is approximately the same size. The areas of necrosis are slightly larger. Ben’s motor skills remain normal and his energy levels continue to improve.

So what does that mean for those of you who skipped pediatric neural-oncology in college?

Ben’s doing really well.

The doctors still don’t know what this new lesion is (soon to be was), but it’s really not a concern as it’s getting smaller and Ben has shown no symptoms to cause concern. It’s healing on its own; so let’s move on.

New necrosis in the tumor shows that it’s still being affected by the radiation and that cells continue to die. We like that. The necrosis does not appear to be happening at too rapid of a rate. We like that too. We want the tumor cells to die at a rate that his body can handle. Too slow and it really doesn’t make a difference; too fast and his brainstem could lose cohesion. It looks like we’re in the sweet spot where his body is taking care of business.

Not sure if that explanation made anything clearer.

Bottom line: Ben good; lesion healing; tumor dying.

The best part is that our next MRI will be in three months if Ben continues to show no symptoms. We like that best of all.

Ben is scheduled for an MRI Thursday morning. I get nervous before each MRI as I try to balance my hopes and fears. I’ve already called into the grocery store to make sure that they have plenty of Ben & Jerry’s on hand.

Look for a post late Thursday or Friday with the results.

We had a fabulous Christmas with a house full of family.

A drum set was at the top of Ben’s Christmas list after The Sleepness Knights gave him a pair of drumsticks after performing his song at our fundraiser. We’re encouraging him to express himself musically in a quite fashion, but the drums don’t seem to have a volume control. Madie’s been going on about the Cinderella Talking Kitchen for months and can finally deliver endless tea and muffins to the whole family.

Peaches got a new blanket for her puppy bed and loves sharing it whenever she gets the chance.

We made a trip up to The Great Stupa of Dharmakaya, a shrine at a nearby Buddhist retreat, on Monday with several of our family members. It was a beautiful December day and we all had a wonderful time.

Ben hasn’t had much of a chance to play with his cousin Joe (one of the few boy cousins he has) in a while and the two of them had a blast all day together.

Wonderful words from my grandmother.

Just taking a quick break from preparing for our Christmas to wish everyone a wonderful holiday. We’ll have over thirty people here tonight and over fifty at my brother’s house tomorrow (told ya we have a big family). The kids are nearly exploding with excitement. The dogs are lazily preparing for the dropped scraps of food. Melinda’s putting the finishing touches on here decorations and snacks. I’m poking away at the computer (hehe).

Oh yeah. Ben had his echocardiogram yesterday afternoon. We don’t get the official results until next Thursday, but the ultrasound technician said that we’d be talking with a doctor immediately if he had seen anything as he ushered us out the door.

Thanks and all our love goes out to you this holiday.

We had to redistribute the train cars on the dining room wall to avoid it from wrapping around the corner and into the refrigerator. We took advantage of the shuffling to blend in the larger sized cars.

Missed the train thread? Click here to see what it’s all about.

Thank you for sharing the holiday with us.

We’re fortunate enough to plagued by a huge family and a huge group of very close friends. We’ve always had trouble finding a location big enough to accommodate everyone at birthdays and holidays and usually end up having multiple shindigs (it’s a hard life I tell ya). We had a house full of friends around us tonight and we’ve never felt so loved.

Congratulations to Lee, Teresa and Alexa for adding Baby Cole to the gang.

We still haven’t gone in for Ben’s echocardiogram. There was a mix up with the scheduling since we were there so late the Friday of his MRI. They finally got it scheduled for this Friday morning to be followed by another day full of discussions with his doctors.

And now I’ll be postponing it all again.

Ben’s school is having several Christmas activities this Friday. He’s so happy to be back in school and we’d hate for him to miss anything for a scan that his doctors are fairly sure will show no results (back to the old brain surgeon ordering a heart scan joke).

The bottom line is that he’s feeling a million times better. He’s back in school. He’s jumping on beds. He’s being a kid again. Yes, we’re still concerned about this new lesion. Yes, we’ll get the scan to rule out a heart infection. We just want to make sure we don’t miss too much childhood along the way.

The doorbell rang at 7 AM this morning as I was groggily trying to decide if I was “working from home” or actually going into the office. I was surprised to find a police officer on our front porch and started running through my recent activities to make sure I wouldn’t be joining him for a ride to the station. I told Santa I was good this year, but a year is an awfully long time.

Ends up it was just Bo, one of the Sleepness Knights band members, dropping off a copy of the CD they recorded with “Ben’s Song.” I had it in the CD player and ripped onto the iPod within minutes.

I’m not sure where to begin in expressing my gratitude to the guys of the Sleepless Knights. First they write a song for Ben. Then they perform it in front of over 200 amazing people at Ben’s fundraiser. Then they professionally record it. Now they’re selling it at local businesses. It’s like dealing with Super Cops or something.

Bo put a great comment up a previous post stating that they all got into law enforcement to help people. Not many people are lucky enough to have a musical talent and to find a way to incorporate it into their life’s work of helping others. You guys are amazing and we’re honored to live in the community that you serve in so many ways.

We’re trying to get a list of where it will be sold and a plan for those of you out of town.

The Christmas train has officially left the station with our first eight cars added over the last two days. As seen in this awesome photo, keeping a photo update on the trains progress may be a little harder than I thought.

Howard, do you have any advice for taking a picture of a wall? Less flash, different angle? You’ll have to come out for the holiday and show me how it’s done.

And an extra shot to get you into the holiday spirit.