Wednesday, September 19, 2007

Stand and deliver

Wow! As you'll see below, it's all good news, and now the tumor has an official name. It's a mouthful, but I say we "gang" up on it and stomp it into mush. I've got a good page with clear information on this type of tumor; I'll post it tonight because right now, I need to jump in my Beetle and head to work. Happy Wednesday!

Hello, everyone,
After waiting for so long for a room to open up, tonight we got lucky. We're now in a semi-private room, much to Sahara's chagrin, but at least we're out of the the ICU. I seriously don't know how nurses do many things going on, so many different patients with different needs. Arrrghhhh...I'd lose my mind. Thank God for NURSES!

We got the final word on pathology today. Sahara has a ganglioglioma with anaplastic features. What a mouthful that is. It is a grade 2 tumor. Although we were hoping it was a lump of dead nothingness, it's still FAR better than the grade 4 diagnosis she was given originally. Normally, a ganglioglioma is a grade 1 tumor, but in Sahara's quest to be different, hers has every type of cell imaginable floating around in it. Dead cells, slowly dividing cells, and rapidly dividing cells. The presence of these bumps it up to grade 2. We are hoping to have a new plan of action in place by the end of the week; a lot of work has to be done to figure out what will serve her best. We're also going to be working on getting Sahara into an intensive pediatric rehab program. Lots and lots to do, that's for sure.

In the meantime, she's doing so well it's almost too scary to type it. Today she was sitting up, standing with help, and was able to get out of bed and sit in the wheelchair for a while (with assistance). PT and OT are working with her each day and they are really great. They had her washing her face and brushing her teeth this afternoon, which she hasn't been able to do in ages. I've done that for her for so long. The PT told her today that she definitely has enough strength in her legs to be able to walk again. WOO HOOOO! That really brightened her day. I can't wait until she gets into some serious therapy again...I think it is going to work wonders.

Sahara wasn't wild about this evening's dinner selection (baked cod), so I smuggled in some S'mores Pop Tarts for a late snack. LOL. She LOVED them and ate every crumb. (The docs are all so pleased with the fact that she's been eating basically whatever she wants since two days post-op!)
I'm excited because I now have a bed to sleep on and can sleep in my jammies. Oh, the great small pleasures of life. LOL. Sahara's excited because they removed one of her IV's, and she's not hooked up to as many monitors anymore. We had one in the ICU that beeped connnnnnstantly. EEEEE. Tonight should be a much better night of sleep.

Shannon and I are lucky to have had the opportunity to get out at least once a day and have a meal together. It's always at some weird hour, either early or late, but it's nice to get outside the hospital walls for a while. It's kept us sane.

The last couple of weeks have been a complete whirlwind. So much has changed, and so far, all of it has been for the better. We miss home so much, but we are really in a great place and Sahara is getting the very best care. That's the number one thing.

Our cell phone reception is pretty lousy here, unfortunately, so if we have missed your call or owe you a call, please be patient with us. Basically, you have to go out into the parking lot, stand in the middle on one foot, cross your eyes and hold up your arms to form a human antenna in order to make a phone call. LOL.

Sahara's snoozing peacefully beside me, and all is quiet around here. Her roommate at the present time is much younger, but he's sleeping too. They try to put kids near the same age together in the rooms, but sometimes it's not possible. This floor is dedicated to kids who have had neurosurgery, so it's a specialized group.

Shannon's gone back to the room this evening, and we'll trade shifts sometime tomorrow morning. It's worked out really well. I've always been the night owl so it doesn't bother me to be here. When he comes in, I'm able to go take a nap and catch up on anything that needs to be done, etc. We hook up again in the afternoon, and hang out with Sahara until we can find that moment to get out for a bit. We're always here for the doctor's rounds and to help her with her meals. The system seems to be working so far. :)

So, another good day for sweet Sahara. Time to catch a few zzzz's while she sleeps!