Thursday, January 15, 2009
Devree ended up sleeping most of the day. She's awake and feeling much better now.
The goal for today is walking. Devree is at a place where she has a lot of people that are extremely happy when she does very ordinary things. She decided that she wanted to get up to go for a bathroom break. That impressed everyone. We were told that most kids wait until 3 or 4 days after surgery. Devree did it about 4 hours after waking up. Wow!!!
A very ordinary thing… but difficult when you feel like you have just been run over by a truck. Devree said, “My leg feels heavy” (right leg). She was a head of the game so it wasn’t until she was out of PICU and into her regular hospital room that she got coaching and information about walking.
Yesterday around 4:00 PM a Physical Therapist came by. He had Devree get out of bed and go for a walk. A loop around the nurse’s station and back. She said, “I feel a little dizzy”. The “PT” man said that was normal. He said that she would feel dizzy, and sometimes nauseated.
Shana just reminded me that Devree’s other goal for today is to take a shower and wash her hair. Wow again!!! Hygiene and looking pretty are one of the things we men really appreciate about women, I just didn’t know it was so innate.
1/15/2009 8:20 AM
Some of you have asked how our boys are doing at home. In reply, I have to share a funny conversation that I heard Shana having with Connie O’Barr.
Shana said, “Connie will you go by and check on my boys? Don’t be afraid to be a mom. Look and see if they have dirt under their fingernails.” That’s when I started laughing. “Please see if they are taking showers and…” So, thank you very much for helping Shana to keep our boys from looking like orphans.
Okay boys! Mom is watching, always watching. She has her ways.
1/15/2009 8:37 AM
A small setback happened this morning. Devree was making her bathroom trip. However, on the way back she fainted and Mom & Dad had to come to the rescue. Shana held her up and called me in, and I could hold her but not maneuver her all by myself. Mom got the nurse and then the nurse and I worked as a team to get her back into bed. Devree couldn’t remember passing out, but she could remember us carrying her back to bed.
The doctors were on their morning rounds and came in about that same time. Dr. Edwards was able to talk to Devree about what happened. He said that what happened was normal. I thought, “It is?” Anyhow, we were told that it was normal for that to happen in the morning. To prevent it in the future, we need to have Devree sit at the side of her bed and breath deeply before she stands up.
On the positive side, I noticed that Devree did not walk with a shuffle like she did with the Physical Therapist. Everyday things are getting better.
1/15/2009 1:04 PM
Well the oncologists just came in and told us what kind of tumor it is. For all of you that want to look it up it is called medulloblastoma or primitive neuroectodermal tumor or PNET. So this is a type of cancer that is most common and they know the most how to treat it. The tumor was unusual in its placement because it was behind the ear and not at the base of the brain. That is really a good thing because her fluid didn’t cause her to be hydrosyphalic which means the brain swells. But because they found two little dots of cancer in two other areas of her brain it means that the cancer has spread.
So surgery was the first step and this cancer responds well with chemotherapy. She is going to be scheduled for outpatient spinal tap and hopefully a port to do chemotherapy about the 23rd of January. From her first surgery date they want to take 4-6 weeks to start her intensive radiation. This will last 6-7 weeks EVERDAY! She will also start chemotherapy for 6-9 months where she will have to be admitted to the hospital for 2-3 days at a time. We are hoping to get into the Ronald McDonald house.
So now are you ready for the “Is thaaaaaaa all you goooooooot” part? There is 50% chance of living for this cancer. So I guess you could say that we are realllllllly trying to look at this “THE GLASS IS HALF FULL!”
They have a school in the hospital for patients and teachers can send assignments through them. We have a wonderful social worker that found safety pins so we can put up all of Devree’s Mormon ads and her Jonas Brothers posters.
Just a funny thing and hopefully Todd will send a picture. Devree ordered “Popeye potatoes” for lunch. We looked and there is nothing but “EEEEEEWWWWW” as the right word. Watery mashed potatoes with a glob of pureed spinach in the middle.