Cerebella testing

Sometimes I am amazed at the absolute stupidity here. Lyric has been going through chemo for the last 3 days.. and the protocol this time is only 5 days and it is not as aggressive as the first 2. However, the one drug he is on they must preform a cerebella test before administering the chemo.

The part I am bothered about is the night dosage at 11 pm.. Lyric is sleeping and tired from the day and they wake him up to perform this test. They make him walk a straight line, touch his nose, then the Docs finger then his nose, then the Doc's finger again.. but for the last 3 nights Lyric can barely perform these tests he is so tired and actually still sleeping. I have to spend 15 minutes getting him to touch the Doc's finger from his nose. And of course it scares the bejesus out of me because I think he's got neurotoxicity. The test is NOT accurate at all. It worries me that they go ahead giving the drug when he struggles to perform a simple task. He is so sleepy he can't even hear you. He continues to lye down and you have to get him back up again. It's terrible.

So last nights test I was upset. I walked out to the Nurses station and voiced my concern. They think it is a valid complaint and are going to see about changing the time on his chemo administration by an hour or so. But apparently it's hard to do because it's a written protocol. But I don't care, I will play mama bear if I have to and get this changed. It is not right. Stupid in my opinion.

Other than that drama, yesterday the kids on the ward paraded around for Halloween. It was so cute. I have some photos that I will post once I am home. Lyric was a 1930's gangster and I was a flapper. It was a really cute combination and everyone loved it. He got lots of treats, and Cadbury generously donated a LARGE bag of candy (including several bags of Halls??)

He is holding up well through this round, has some bouts of nausea and has lost his appetite. But I am not worried, this is the usual during chemo and once he's done he's back to normal.

Avery and Lyric's dad are visiting today and we are all dressing up for Halloween... it should be fun. Lyric has also not been neutropenic this stay, but looks like he will be as of tomorrow.

While we were at home this past weekend Lyric went to school Monday, his first day of school. He hesitated going afraid of how his friends would view him. But I took him anyways and stayed with him and he was fine. He enjoyed the day seeing his friends and being in the school environment.

Avery is doing well, she's as sweet as pie and I miss seeing her. Hopefully we will be going home Monday and we will STAY home until the next round 3 weeks later.

I also think we will be here at Christmas as well.. which will suck.