More acronyms than even the government uses!

Ollie sitting up and getting out of his room for a short while on Day 19.

Like a newborn, Ollie is mixed up about night and day because he can only see dark, so he was up at 5 am and demanding mashed potatoes. I was exhausted and didn't remember that he was NPO (nil per os which actually means "nothing by mouth") after midnight! Whoops! So they were kind enough to bump his lumbar puncture (LP) to noon to assure him the 6 hours with an empty stomach. 

He had an emotional morning, crying because he wanted to go home, missed his sister and wanted to eat. It's partly the 19 days we've been here so far and likely the steroids from his chemo causing the aggression and emotional outbursts. 

So he wanted to leave his room and we used a wheelchair to go to the playroom for a bit. We tried to use Beyblades, but he got upset because he couldn't see what he was doing. Started to play a game, but his back was hurting. We're building his strength, but every activity still takes it out of him. After that he rested in his room for the rest of the morning until they came to get him for the LP.

The LP went well. After 6 of these is becoming routine. They found only 3 cells this time down from 16 last time. No word on what v his pressure was this time, but I dialect journal since the pain has gone away. The doctors were right about the lymphoma cells though, in that the last ones are strongest and hardest to find and blast out. So more inter-thecal chemo in his spine today and hopefully next time there will be no cells left at all. Then they'll do inter-thecal twice more just to be sure. 

Ollie's spine looks like it has been used as a pin cushion. :-(

Optomology also put drops in his eyes before the LP and examined him in.the OR before the LP started. We have no word back from them yet on what they saw, but they did tell me last week that if it persists for a few weeks it is less likely to be reversible.

I wish that I could have taken a picture of how things are in the operating room (OR). They're much smaller and more intimate than you'd imagine. As the parent you get to gown up and go into the OR to hold their hand until they fall asleep under general anesthesia. The first time Mario did it and I was a basket case. The second time I breathed through it, but felt worried leaving him. This is his 9th time in the OR in less than 3 months. Unfortunately we are now getting used to it and it's becoming part of the new routine so we're both much calmer about it now. 

After his LP when he was in recovery, he was raising a ruckus about still having his NG (nasogastric) feeding tube in. He was mad and trying to pull it out. Recovery is a giant room with several dozen curtained stations. The last two Saturdays we were the only ones in there. Today there were about a dozen.kids having to recover to my son's complaints. Naturally as I'm trying to calm him down, an alarm stated to sound as a dozen doctors came running in to the bedside of one poor kid who appeared to be coding! Given Ollie was a distraction they got him out of there immediately! 

So with the help of meds suggested by doctors to help him rest without pain, he slept all afternoon and evening. The child life specialist came in to talk to me about things we could start to do to normalize his blindness. Today I've started some research on apps, resources and ideas that may help  him to adapt. 

He woke for a midnight snack of mashed potatoes (thanks Maria!) and turkey (thanks Kevin and Isabella!) with a bit of chocolate milk to wash it all down. 

Sleeping again and we're hoping for sweet dreams!