My apologies to all of you waiting to hear how last Monday went at the oncologist preparing for radiation, that is now starting today. Everything caught up to us this week, exhaustion, anxiety, frustration, etc, to name a few.
Last Monday took 5 hours at the hospital for things that shouldn't have taken that long, but it's ok we made it out in one piece. The nurses there are amazing. Dolly is one Ellie became buds with once she quit making her put the wierd feeling bite mold in her mouth. That was the first ordeal Ellie wasn't cooperative about. Ellie explored all the things that was needed to make the bite mold so we thought she was ready to go and put it in her mouth. So Dolly put the green mushy stuff in the mold and let it sit for a minute. When it was time for Ellie to bite it, Ellie wasn't ready. So she touched it and we talked about things. Then we thought she was ready to do it so we got a second one ready. Well Ellie fought us again. Ryan and I are trying to convince her to do it quick then it will be all over with. We are telling her that it doesn't taste like anything, which is true. We are touching it somemore, etc. So we think she's ready so Dolly makes up a third tray. Well she still isn't cooperating so it gets too dry and we can't use it. Finally I offer to put it in my mouth to show Ellie it's ok. Why didn't we think of this the first time? RAR!! So she asks me how it tastes and I tell her it doesn't taste like anything. Ellie puts the one I just put in my mouth in hers part way to see how it is. She tastes nothing and I think realizes it is ok. So when she says she is ready Dolly makes up the tray the fourth time and Ellie and I put it in her mouth. Now since Ellie can't move the right side of her face opening her mouth really wide isn't the easiest thing to do. We have to pull her mouth open on that side to fit this mold filled with green gooey stuff all the way in there and line it up correctly before she bites down on it. Oh my gosh this wasn't an easy task, but we did it. Dolly helped line it up and then Ellie had to hold it in her mouth for 3 minutes. We kept her occupied by watching the clock and playing a Nintendo DS game. Meantime Ellie is gagging and fighting to try to get it out. She made it through. The mold wasn't the greatest but it was good enough. She Dolly attached it to a frame with balls on it to help the machine line up the radiation beams in the precise spots. Ellie didn't want to put it back in her mouth but had to to test the quality of the impression. Geez this took forever.
Then it was off to make the pillow and mask to get a CT scan. Dolly sprayed a special pillow with water and Ellie layed on it to make an impression of her head. Then Ellie had to make the mask. Dolly took her to explore it while it was soaking in warm water to make it stretchy. So when Ellie was ready she layed on her special pillow and the nurses put the mask over her face and snapped it to the table. So they molded the mask and Ellie had to lay there for some time while it dried to the shape of her face. She got restless and the plastic hit her nose and hurt her a bit. So when it came time to do the CT scan Ellie didn't want to lay back down to put the mask back on and the mold back in her mouth. So Ryan, the nurses and I tried to talk her into doing this. She even had her doll with her. She didn't want to so we told her if she didn't they had to get the sleepy men to put her to sleep. Well Ellie didn't want pokes or to go to sleep. The doctor that reads the CT scans walking into the control room Ellie saw him through the window and asked if that was the gassy man/sleepy man. The nurses said we gotta lay down and do this before that man comes in the room to see how you are doing. Aparently Ellie quickly cooperated so that sleepy man didn't have to put her to sleep. By this time Ryan and I have left the room because she isn't cooperating for us so we left her to the nurses. We are waiting in the waiting room.
After the scan we wait for them to take her to the MRI. When it's time for the MRI Ellie goes by herself with Dolly and a technician. Ellie sat on Dolly's lap while they poked her to give her contrast and then layed still on the table to do the quick MRI. So proud of her. After she was done we were happy to get outa there. The hospital does give out beads of courage, they call them bravery beads, so Ellie got three to start her radiation bead necklace.
Ryan and I realized things are going to go much smoother if we don't go into the room with her but wait for her to be done. Although we will go into a room with a microphone to read her books while she's getting radiation. They explained to us it should take 25 minutes in and out. She will be receiving radiation for 3 five minute sessions. One right after the other with short breaks for the nurses to go into the room to make adjustments and go back out. The doctor said there will be some side affects. She may have some nausea, vomiting and fatigue. The nausea part of the brain is near where they will be shooting the radiation so she may experience more than usual. They will give her meds and try to adjust the beams if she's experiencing a lot of nausea. We are praying this goes smoothly of course. I think that's about all to report from Monday. Pictures are coming up in the next blog.
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