First Chemo Cycle Dose

Here we are at the hospital. Ethan has been doing really good with just one, minor vomiting experience thus far. If he continues to do well then we will be released tonight at 9:00pm. The chemo was given over a six hour period last night, following two hours of hydration. He slept through most of it, aside from having to wake to go pee every hour. He has been very snugly and sweet all day.

I ran into Ethan's favorite doc, Dr. Maze, in the hall. Afterwards, I told Ethan he might drop by to see him and Ethan pointed to his fingernail and laughed. This was because Dr. Maze had promised Ethan he could paint one of his nails on his last day of radiation. Because Ethan got a port infection and radiation was delayed, he never got to do it. Ethan remembers everything! (For those of you who don't know, every time I paint my nails Ethan requests that at least one of his be painted too.)

Dr. Rosenfeld went over Ethan's recent MRI with me yesterday. There was a little enhancement in the tumor bed cavity, but that could just be some scaring. We will know for sure over time. She also went over some right-sided facial atrophy. It looks as though he has not been using his facial muscles on the right since surgery. Neither the neurologist, neurosurgeon, radiologist, or ENT docs can explain it. Hopefully, Ethan regains the use of that side eventually. The ENT dr thought it would be 6-12 months before we know for certain. Our doctor will present this development to the tumor board tomorrow to see if anyone has any ideas regarding the cause.

We are very happy to be almost done with his first in-patient chemo stay. Very happy that it has gone so well too.

Thank you to everyone for all your positive thoughts and prayers. Love you all!

Nikki

Ethan had his MRI today which went well. He had a little trouble waking up, as he was a bit irritable. After that passed, the doctor called and said the tumor bed cavity and spine looked good. The only issue was the right side of his facial muscles had more fatty tissue than the left. The doc was checking with the neurologist to see why and will get back to us on Monday regarding.

He checks in Monday for his first cycle of chemo since his break.

Wish him luck!

Hi Everyone,

I've been getting along pretty good. I have had a lot of energy and I am always up for a walk to the bathroom or even at the park! Today I've had a bit of an upset stomach from my weekend antibiotics that I have to take, but other than that, I'm doing good. I ate half a pudding cup yesterday. It's still really hard for me to move my cheeks, so it's a slow process but I'm making progress. I'm making more of an effort to speak, but I still have trouble with phonation - my sounds aren't clear yet.

I don't have any doctor appointments this week, aside from an MRI on Friday. I do have speech and OT, but those are always pretty fun. Next Monday I check into the hospital for a night to start my chemo cycles. I hope I only have to stay one night... :) Wish me luck!

Thank you again for all your support.

Ethan

I had a great weekend. I went to Tucson and went to the Wildlife Museum, which was full of stuffed animals. It was really neat to see the actual size of all the exotic animals of the world! Many towered over me and I loved it. My lil' sis got to go swimming with my Aunt Laura at the hotel pool, while Mom, Dad, and I played new DS games. We also walked around Fourth Ave. It was a nice little getaway.

Yesterday, I wrestled with my Aunt Laura for over an hour. I repeatedly got myself up into a sitting position. I had so much energy! This morning, I had my hearing test to be sure the radiation didn't do any permanent hearing loss. Things checked out pretty good. I did seem to have a little fluid in my right ear, but nothing they were concerned about. My ANC (blood count) has gone up, so things are looking up there too. It's no wonder I have more energy. Even though they had to access my port at my appointment today and I got really mad about it, I had a good visit. Everyone was very impressed to see how well I'm able to walk with assistance.

A few minutes ago, I crawled to the edge of my bed and sat up on the edge all on my own for several minutes. My mommy didn't think I could do it for as long as I did. I showed her!

So it's all good news on my end. Hope you all are doing well too. Thanks again for all your love and support.

-Ethan