Much needed update

Well I apologize for letting this whole week go by before updating about last weekend or this week. Last weekend when I brought Ellie home we went to the Cedar Falls water park to swim with friends. We all had a blast. At night we had a fire in the back yard with Grandma Julie and Uncle Erik, Ryan, myself and Ellie. Nate got to go to bed. Then on Saturday we did our typical shopping for groceries on the weekend but checked out the new Target for those groceries. We like!! Sunday we went to church and Ellie had a play date at Dasha's house to jump on the trampoline while Ryan and I took Nate home. Ryan mowed, I got laundry done, and packed for Ellie and Ryan's week in Iowa City. Ryan and Ellie hit the road about 2pm to head back to the RMcD House. When they got there they met their friend who was there two weeks ago when Ryan was with Ellie. They checked out a baseball game they found going on acrossed the street for a while with their friends. Being around campus on the sports side you run into random games of all sorts. Iowa Baseball I guess.

Radiation throughout the week went really well Ryan reported every day. She is needing to sleep a lot more now these days. Almost 12 hours at night and naps if she needs. On Tuesday the techs at the hospital had a cake and ice cream party with Ellie and Ryan. When Ellie goes she is the only child getting radiation and she loves it up. She gets tons of attention and she has fun. This is a blessing because I'm not sure how you'd get a child to keep going back if it wasn't fun. The people there are amazing!!

Thursday Ryan took Emily, Ellie, Ethan and Haley to a park between Coralville and Tiffin to fish and swim. They have a beautiful lake with a clean beach to swim and play in. They all loved it, except Ethan isn't one for getting dirty much so he didn't want to go in the water I guess. There are pictures on Facebook of them playing at the beach. Just one. Tonight Ryan and Ellie used the gift certificate to Chili's and had ribs. There is also a picture of Ellie eating ribs on Facebook. She loves eating meat with daddy. She eats the deer and rabbit he kills and cooks up. Yum! (Not!)

Tomorrow they will be headed home for another fast weekend to go by. Ryan told me tonight the RMcD House is getting their floors replaced in the kitchens so they are moving the refrigerators out into the Great Room. This should be interesting and no cooking for the week it sounds. That's ok, I found some Mexican Restaurants I want to check out anyway. YUM YUM!!
I will put pictures up of our many adventures later. Thanks all, we love you!!

Radiation pictures

After Ellie checks herself in at the desk she runs to the play area and pushes the button for this neat machine to start dropping the balls down the maze of musical chimes and tricks. It's really fun to watch. I also enjoy watching it.

Ellie does the different kids activities until she is greeted by a technician that comes to get her. Today Ellie shows her the books I will read to her during radiation. Today it's BIG SMELLY BEAR by Britta Teckentrup and MR. SEAHORSE by Eric Carle.
Ellie runs way ahead of us to the radiation room and gets this remote out to start zapping me. They aparently play lazer tag where Ellie tries to tag the technicians with the light. When Mike the technician came in he was ready for her and hiding.

This is the bed Ellie lays on and the radiation machine rotates around to shoot the radiation at different angles. As I was reading to her and they were doing what they do every time Ellie moved too much one of them had to run in and move her and the machine to a different position to begin again. I was a bit overwhelmed watching them run in and out so much cause Ellie was having trouble coughing and staying still.

Here Ellie is high up on the bed and points out that Mike, Jen and I are the three wearing glasses. Ellie likes Mike a lot. Once she noticed he wasn't in the room she asked where he was.

Outside the room these are the computer they use to make sure Ellie is getting the same amount of radiation units each day. This is also where they can see if she's moving more than she should for the treatment. On the left are three televisions with cameras at three different angles so I can see what's going on with her while I read to her.

Here is a picture of one of the screens while Ellie is laying on the bed and one of the techs is adjusting things.

Here I am reading to her and Mike running the computers.

After radiation on Wednesdays Ellie stays to see the doctor quick. So she gets a arm hug and temp check from another tech before she sees the doc. She also gets weighed.

radiation week 2 day 2

When we got inside from playing, with another family we met here, there was a couple from Stampin' Up offering guests card making. So we joined them of course. This is the card we made. Both Ellie and I were able to make 2 cards each. Then we painted her nails so she wanted to show them off with the card.

Also Monday we went out to Em's and this is the kids playing in the pool with water guns.

Here the kids are raking and shoveling all the grass out of the pool.

This is Ellie and Emy playing the paint and swirl today, Tuesday, afternoon before dinner. It's nice to have other kids around for Ellie to play with.

Here Emy takes a turn at the paint n swirl.

Tuesday morning, after we finished our house chores, I got a call from Dolly saying the radiation machine was giving them trouble and that they'd call us later when it's fixed or when they can squeeze her in on the other machine. So on this rainy day we went to the Coralville mall so Ellie could play with some kids in the play area. There were lots of kids and moms playing. When we got hungry we headed back to the RMcD House to eat lunch. Then I got a call saying they'd be ready for Ellie at 1:45 for radiation. So after lunch we went to radiation, that went well, so we headed back to the house to spend the evening. I'm hoping Ellie will let me go back with her tomorrow to take pictures and watch her during radiation so I can see what it's all about. So maybe I'll have more pics to show you tomorrow evening.

Radiation week 2 day 1

Well I am with Ellie this week at radiation. Today went well. I just had Ellie show me what to do next so it was like she was teaching me. We used the free vallet parking benefit they told us about for use during radiation. It was quite nice. Just pulled up. They moved my car down the drive then it was there waiting for when we got done half hour later. So quick and easy. I think I'll be using that every morning instead of dealing with a cramped parking ramp.

Today we have been hangin' at Emily and Jesse's in Lone Tree. Ryan's sister and her husband. Em didn't have to work so the kids have been playing in the kiddie pool outside then we made homemade Kool Aid play dough. It's so wonderful having them close by to help fill the time. Plus the kids get to see each other more often.

After radiation before we came out here to Lone Tree Ellie and I went to a pet store to see the dogs and cats. So adorable. Wish I could save them all from having to live in the little cages. I posted pics of the dogs on facebook. They are so cute.

Well I'll keep posting as much as I can.

3 day update

Well things are going very well for Ellie in radiation treatment. She happily goes with Ryan to the hospital and when Dolly comes to get her she goes back, no worries, cooperates and comes back out when she's done. Ryan said today she comes out every day with her bravery bead in one hand and a treasure box toy in the other. Bless her heart so far she is doing wonderfully. No side affects yet. Maybe next week she'll start feeling fatigue or something. Usually takes time to set in. Ellie gets 15 minutes of radiation treatment a day. Three 5 minute sessions back to back with a couple minutes break in between.

Ellie lost her first tooth Saturday morning. She woke up and was so excited she pushed her tooth out with her tongue. We forgot to put it under the pillow the first night and the second night but the tooth fairy remembered to leave her $1 under her pillow anyway. Ellie asked me if the tooth fairy "really happens in real life." At the time I didn't know if she was trying to ask me if it was for real so I just said you really get money under your pillow in the morning when you loose a tooth. So then I realized she was probably meant was the tooth fairy real. Oh well she can find out later.

Ryan and Ellie have been going to Aunt Emily and Uncle Jesse's house to hang out with them and Ethan and Haley every evening for dinner. They've really enjoyed it. It's nice to have them close to Iowa City to be able to see family. Thanks guys! Ryan is taking Ellie to a movie Thursday afternoon he said. It will only be her 3rd movie in a theatre so she'll enjoy it. They are going to see Ice Age: Dinosaur something or other. Show's how much I pay attention.

Thanks for all your prayers and support. We love you all out there.

First day of radiation

Another update today. Sorry bombarding you with updates. :) In one blog I apologize for not updating and now in this one I am apologizing for doing it too much. I am crazy. I know I shouldn't be apologizing because I get around to it when I have time. I just happen to have time today. I got a call from Ryan and Ellie when they were leaving radiation and she did wonderfully. When they were walking down the hall to get to the office Ellie saw the Chief radiation technician Dolly and ran down the hall to see her and give her hugs. Then when it was time she went back at 11 with Dolly and didn't come back til 11:45. She did the X-Rays and radiation treatment all by herself, no daddy and layed really still. She said she held the bite mold in her mouth really still. She was cheerful on the phone with me and was telling me everything else they were going to do today. It was wonderful to get this news!! My anxiety level just went down a few notches after that phone call. Now it's just half hour every day at the hospital. YAY!! Thought you all might want to know!! Thanks for your prayers and support!!

Radiation prep pictures.

Here is Ellie checking out the green gooey stuff that makes the mold. She's not too sure about it.

Ellie finally holding the bite mold in her mouth until it sets up.
Ellie laying on her pillow talking about the CT scan they need to do and such.

Dolly showing Ellie what the mask is like before they mold it to her face.

Molding the mask to her face while it's snapped to the table. This is when she wiggled part way out and her nose hits the end and gets scraped. It covers her nose all the way when she is all the way in there.

Radiation prep update...

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.

Short update...

Today we got Ellie up and sent her off to church with our neighbor DoLoras so she can get there early for Sunday School. Well when we got to church early to be greeters Ellie wasn't feeling well. She had been coughing and had a high fever of 102.9. She was also feeling chills. So we gave her tylenol and visited with a nurse at church. She said something is going around that is similar to what Ellie was experiencing. We think she has a virus and will monitor her but we also hope this doesn't interfere with treatment. Rhonda, the nurse at church said it's been lasting about a week so we hope she feels better sooner than later.

Thanks and prayers...

Well it has been a week since I posted. Not much has been going on to report. I've gotta thanks the ladies helping us get Ellie from daycare to therapy and back. On some of the therapy days Alice, Debbie, Jenny and Bev have helped get Ellie to therapy and back. We appreciate it so much. Ellie is eatin' up the special attention. We also want to thank the ladies who have taken Nate for us and those who are going to since our daycare provider has been closed for vacation and will be closed for sinus surgery. Pray that Wendy's sinus surgery goes well and she doesn't have terrible after affects. Also that she can be back on her feet when she hopes to have kids back. Mom, Marti, Crystal, Lisa, Carey, thanks so much for helping out.

This week Ellie did have a follow-up appointment with Dr. Menezes in neurosurgery. The visit went fast and really well. He was very pleased to see how well Ellie has bounced back. He had her walking, running, skipping and jumping around the halls down there. She's really doing great! Just 6 weeks since surgery I think.

We will go to Iowa City this Monday the 6th to prepare for radiation. Ellie has to get a CT scan, MRI and do a bite mold and mask which she will wear for radiation treatments. We aren't sure at all how this is going to go. We are going to try to do it without anesthesia because they are short scans this time. The MRI should only be 15 minutes and one of us can be in there with her to help. Not sure about the CT scan but they are usually quick. Please be in prayer on Monday for Ellie and us and the technicians and possibly the anesthesiologists. That all may go smoothly with the least invasive measures being taken. The closer and closer we get to starting radiation the more anxiety I am getting. I just can't imagine this is going to be in any way easy for her or us. I don't know what to expect or anything. These are things I will ask about Monday in my long list of questions. Ellie talks about not wanting any more pokes and we tell her then she is going to have to lay really still and help the doctors so they don't have to poke her. We are plannng fun activities to do with her other times of the day if she feels up to it. Oh I hope this goes well. I'll update maybe Monday night or Tuesday about how things went.