Sarah Takes Charge. . .

Last night I slipped away from the hospital when Sarah agreed to come spend the night with Brendan.  She took over all responsibilities, including taking pictures and writing the blog post!  I felt guilty driving away from the hospital since I could leave, but I knew how much Brendan wanted to leave too -- and couldn't.  Seeing the sunshine and my kids has helped me clear my head, and has given me another boost of energy! -- Kerry

What a gorgeous day!

Sarah:
I'm surprised at how fast time flies here. Just a second ago I was groggily checking the time at 6:45 when beeping machines were going off and nurses were coming in and out. And now it's 8, and he's already downed 2 bowls of fruit loops. We made a couple records on the fruit loops: we're up to three loops on the spoon at a time no sweat! We also set a record for most milk spills down the neck. I'm pretty much pro at that.

I slept way better here than I thought I would, in fact, way better than I did at my apartment the night before. I don't know if it's a bad thing that I could pretty much sleep through most of the beeping machines and the 2 am medicine. 

Charlie just asked what I do in my free time here. I told him that I'm supposed to be writing a paper, but that I haven't actually had any free time yet to do it. He scoffed at that, (because the hospital is the most boring place ever, right?) but it's true. There are very few truly quiet moments here. He's eating, or the nurses are in, or I'm tracking down cups, or talking to his eye doctor, or visiting with his visitors, or rearranging the blankets (heaven forbid the feet get cold!), or especially massaging his feet. I love massaging his feet because of the happy purrs that come. Much better than the painful whimpers or the frustrated huffs that the nurses get. 

They let him drink Sprite with his pills, and now he says his tummy is carbonated. 

Goals for today are 3 meals, all eaten sitting up in the chair, 3 walks out of the room, and smiling! Charlie thinks those are a little too ambitious, but I'm pretty determined to make him try. 

Straws? No straws til at least Monday.

The eye doctor said that things look good with his right eye, and they're not too worried about it being encroached upon, so eye checkups are now reduced from every day to 1-2 times a week. 

Having all of the wires and drains gone makes a big difference, and Charlie is looking so much better. His head is healing up nicely as well. He was a little concerned yesterday about having scarring around his left eye, but I just pointed at the bumpy scar I have under my eye and was less than sympathetic. "It's going to be a lot better than this one," I said, "so I can't really feel sorry for you about that." I went on to make a joke about his black eye and getting in fights, but apparently he's heard that one plenty of times before. Not funny anymore. 

Therapy came in and Charlie was about this much excited about that. Not. 

They made him get up and walk a few steps down the hall. Then he had to sit up in his chair to eat breakfast. I made him butter, syrup, and cut his French toast, and by the end, he was seriously questioning if it was worth it.  

Kerry:  Sarah wrote that much before Brendan had a tremendous pain in his head and had to be helped back to bed.  I was almost back to Primary Children's Hospital at that time and was quite worried about what I would find when I got there.  When I walked into the room, Brendan was laughing and smiling and his head was feeling much better.  The neurosurgery fellow came and checked him out and said that it was a low pressure headache where the fluid was still draining into his back and creating a vacuum, and after he had been up for awhile the pressure change in his brain caused pain in his head.  When he would lie down again, he would feel better.  So he has to keep sitting and then resting and build up time sitting up.

Sarah again: It was actually really scary. Only like 30 seconds after that picture (above) was taken, he suddenly started shrieking in pain. Ever since I've been back, his pain hasn't been above what he rates as a 1.5, but when we asked, he said he was at 5. So I was terrified. I tried to get him to take deep breaths and I pressed the button to get the nurse in. I tried to tell him that he was alright, and he loudly assured me that no, he wasn't. We got him back onto his bed laying down and there was some instant relief there, but the whimpering didn't stop and it made my eyes keep leaking. I couldn't understand how the nurses could last without breaking down and crying whenever they heard the sounds of children in pain. It was definitely too much for me. We gave him some painkillers through his IV and he got to sleep for a while. Eventually it was under control enough that he didn't yell every time he woke up, and by the time Mom got here, things were looking much better and kept improving throughout the afternoon.

Snoopy came to visit!

Rachel sent a package from the Czech Republic for Brendan.  She sent a hockey jersey of a Czech team (which all the boys wear there), toys inside a chocolate egg, and a postcard from Brno.

A visit to Hogle Zoo -- which is just around the corner from Primary Children's Hospital. Can't wait until Brendan can come with us!

Lindsay and her marching band friends all sporting "Charlie's Angels" bands at their band competition today!

Shaun is spending the weekend with Brendan.  On Monday, Brendan's has his radiation "simulation" and planning.  (Not sure yet what all that entails.  I know they will make a mask for Brendan to wear that has the places marked on it where he needs radiation. )  Radiation and chemo will be done together we think, but won't start for another week or so, until Dr. Bollo "clears" him and says he's healed enough from the brain surgery.  

I was asked why they are doing radiation.  Apparently, this type of cancer is typically treated with surgery and radiation.  Brendan will have to undergo chemotherapy as well, because his lymph node biopsy showed the lymph node on the left side of his neck was cancerous as well.  But the full body scans showed the cancer is limited to his head and neck.  This type of cancer doesn't usually spread to other areas of the body.  I suppose we will know a lot more about the radiation after Monday.  For now, we're just glad he is improving and gaining strength every day.  

Thanks again for the many thoughts and prayers offered in his and our behalf.  We know they are making a difference and we feel the strength and power of them!