Thursday, April 30, 2009

Chemo and other tests

Some of you don't look at the comment section and some have asked about why we still need the chemo. The chemotherapy is to kill any cancer cells that may still be in her body. Cancer just means fast growing cells. A cancerous tumor can be found just about anywhere in your body but really can't be detected until the tumor gets to be a certain size to see on CT scans or MRI's. The chemo kills any fast growing cells, good and bad. So all of the cells inside your mouth and esophagus or stomach and hair is attacked. So there are numerous side effects of chemo. So Devree has had her round of tests to make sure she doesn't loose any ground during chemo. Her hearing has been tested and hasn't improved or gotten worse. Radiation and cisplatin (main chemo drug) cause hearing loss. Her balance has gotten better. But I was hoping that her Physical Therapist would offer the electric muscle simulas for her facial muscles. St. Jude wouldn't do it during radiation and now the hospital doesn't allow it at all. That was a bit of a disappointment. I guess I will have to research that myself. Her coordination is better. She did the game with Dr. Armstrong that she doesn't like to play, touch the finger to her nose and then touch the doctor's finger as he moves it quickly in several different directions, He was really impressed because she has improved. She was tested for occupational therapy and passed with flying colors. Her psychology test came back before and said she is a little slow in her responses. She will be tested again in psychology. She is being tested for speech. Speech for brain tumor patients is a little different than just seeing if she can pronounce the words with her paralysis. She is tested on how quickly she can come up with words and explanations of pictures of items. She passed with flying colors before. In fact they went as high as their testing allows and Devree passed.

Today we will have a radiation follow-up. The affects of radiation last up to 6 months after. She did apheresis for 9 hours being in a bed to get her stem cells for transplant during chemo. She was able to get enough for 2 rounds of chemo but she will have to go back for another time ofr apheresis. We were relieved because sometimes 2 days in a row they want you to do apheresis, but Devree's blood was good.

At 8 pm we will be admitted into the hospital to start chemo tomorrow. I will take pictures of the hospital and it seems like they still want us to do a ton of stuff in there. She needs to get up and make 3 rounds of walking around the hospital floor and she has to blow in this thing about 10 times a day and she has to do stuff for her teeth several times so the chemo doesn't make her teeth fall out and so that she doesn't get mouth sores. She has to urinate every 2 hours for 2 days so that the chemo doesn't stay in her system and damage her kidneys. They give her another drug to help prevent that. There is a packet of 100 pages that I had to read and frankly it is SCARY!!!! She has to be weighed 2 times a day at 12 hours apart, wearing the same clothes because there is another drug that causes liver damage and any weight gain could be the liver shutting down. Then we have to be really careful of any bacteria or germs in anyway! So she has to take a bath everyday and a sitz bath in iodine. She has to wear slippers on the floors but cannot just wear socks because she is not allowed to walk on the floors and sleep with those same socks. Of course she has to change her clothes everyday but she has to be wearing the same clothes that she was weighed in that same day. There are only 3 other people allowed in the room because of the Hepa filter to clean the air. But I do get a seperate room so the nurses won't be waking me up, I will just wake Devree to assist her with the going to the bathroom every 2 hours. I don't know if they allow anyone to visit. Right now it looks like just family and no one under 12 years of age.

Whooeee, if this isn't something! I have the camera packed to take all of the pictures of us in the hospital.

Have a Great Thursday.

Wednesday, April 29, 2009

Happy 19th Wedding Anniversary to Todd and I

Yes today is our wedding anniversary. We were married in Laie, Hawaii in the temple, 19 years ago. We held out and had everyone who could... come to Hawaii for us since Todd and I were attending BYU - Hawaii. That was a wonderful day and time. Todd and I reminisced before I had to come back to St. Jude's about how this time has flown by. When you are growing up at your parents home the time seems endless. Now we are married longer than we lived at home and the time seems like a blink of an eye. It has been a very happy time filled with challenges and it looks like we have some more challenges to face too!

Yesterday was a great day after we found out our good news, but when I woke up that morning I couldn't hardly face the day thinking that we might have bad news. Devree had been so miserable on Monday and I just couldn't face the thought of being upbeat for the both of us if we got bad news again. As I was putting on my makeup in the bathroom I had been crying for most of the morning, silently, because I don't like to upset Devree when she already has so much on her plate. I thought "You know I just have to FAKE it till I MAKE it. If that includes faking being happy, then that is what I will do and hopefully it will be infectious and Devree can feel the happiness and be happy too!" So I started to sing "Zip-a-dee-do-dah" but my voice cracked. I had to start again. A little bit stronger and it worked! Devree chimed right in and she was Happy or she was faking it too and pretty soon we didn't have to fake it anymore. We had joy and happiness in her hearts.

My friend Debbie Fauvell heard about Devree and called me on the phone right before we had to leave Nevada. She sent me a glorious book and I am recommending it to everyone. If you think you have challenges, you haven't seen anything compared to this author. The book is "Hard Times and Holy Places" by Kristin Warner Belcher. Deseret Book published it. The author said some really wonderful things that hit the nail on the head. I just about highlighted the whole book.

I am jealous of all of you that get to hear Elder Bednar speak. He is one of my favorites. Todd supposes that possibly President Brewer will be released in our stake since he has been in for 6 years. He has been there as long as we have lived in Dayton.

For those of you that have Fast Sunday this Sunday we are fasting that Devree will beat this cancer for good, that she will have an easy time through chemo and that her right side will come back with her hearing.

Tuesday, April 28, 2009

Our weekend! GREAT NEWS!

First of all thanks for all of your comments on yesterday's blog. Linda, I did look at the nursing bra but the main problem with that kind of bra is too much coverage the way it wraps and also because she really can't have anything around her underneath where the lines come out and could get kinked. We are thinking a string bikini where we could possibly bring the string down in front but have it be halter top with little triangles to cover up the necessities.

Well I had to turn off the laptop for a while and we heard some awesome news. I have been waiting since Friday to hear about all of the MRI's and the lumbar puncture. I couldn't even sleep Sunday night worrying about it. Then I get here yesterday and they weren't even going to tell us and we weren't on the schedule for today! I had to call and tell them "Hey I am the Mom and I want to know!" So miraculously we were on the schedule this morning right after Devree's lab. The results are GREAT! There is no more signs of cancer on her spine. Her brain only shows a little bit on the original site and Dr. Armstrong said it could be just scarring from the surgery. The spinal fluid from the lumbar puncture came out CLEAN! That means no signs of cancer anywhere else in her body! YEA! YEA! YEA!!!!!!

So back to the weekend.

Devree has been feeling pretty nauceous and even did the V word yesterday. On Sunday she had a really bad headache and we really can't give her any aspirin or anything like it right now becuase of getting ready for chemo. The meeting was almost over and Devree said I need tolie down. We leave and then Celest came out and kindly asked people to let Devree lay on a couch. Then Val, a leader in Young Women's came out to see how Devree was doing and said Hi. Then somebody suggested that Devree lay on the floor for Sunday and have the whole class lay on the floor! So they watched a movie in Sunday School and the whole class layed on the floor. Then in Young Women's they did the same thing. THANK YOU GERMANTOWN WARD for helping Devree to fit in and make it through all of her meetings.

Pam and Gary Neumeister came and visited us on Sunday evening and had lunch with me yesterday. It was so wonderful to have neighbors visit and to bring our extra stuff. They will probably be the only ones that visit from Dayton besides Todd and the boys. I really appreciate them including us in their travels. I gave them the grand tour of the hospital too. Pam took pictures and they are doing a blog too. So if you want to see pictures of us visit their blog on

Celest also came and had lunch and talked with Devree who was having a melt down with her sickness yesterday. Sometimes it gets to be hard to be here.

But we are very happy today. I was in the bathroom putting on my makeup and talking with Devree and Devree asked to use the bathroom. Without thinking I said "I'll get out of your hair in a minute." Devree's quick response was "Hair? What Hair?"

Monday, April 27, 2009

For Females Only!

Okay this is for all of you males that might read this including you Sloner. This has some funny female stuff in it so you may not want to read it. As women we have to go through some pretty embarrassing stuff. Devree has chosen to make light of it. When she got her lumen lines put in they come out exactly in the middle of her breasts. The first thing she said is "Mom these tubes make my boobs point in different directions". I said "You mean like North and South?" Then I started laughing because that means that the boobs would be pointing Up (North) and down (South). I expl;ained this to Devree and she started laughing and said "More like East and West MOM!" Then later in the day when the medical staff whips her T-shirt up quite a few times to get to the lines exposing her breasts each and EVERY time she says "Mom I need some Mermaid shells! You know some self sticking ones." I laughed at that. I told her that maybe we could go shopping for some and Devree said she would like some button up front shirts so maybe she wouldn't have to expose herself so many times in a day. Her dressing around her lines prevents her from wearing a bra comfortably but we are asking for some ideas. If anyone finds something that might work, Let us kinow.

After Devree's surgery with the installation of the lines, the staff gave her Morphine. It was a blue liquid and that same day Devree started her menstrual cycle. She took the morphine and she said "Mom this isn't even any good, because it isn't even touching my CRAMPS!"

So the next night there was a potluck at the Target House and we talked to another Mom from San Diego with the 17 year-old daughter with Medulloblastoma. They are on their last round of chemo. She has been a great source of info. She was telling us to ask for the nightly IV right away and she called it TPN. She said that her duaghter wasn't eating anyway so you might as well give her nutrients and medications while she is sleeping because they will give you a home line so you can just connect it through the lumen lines. She also told us that they will give Devree medicine to stop her cycles during chemo because they don't want her to have to deal with that too. I was talking to Devree later and I said we are going to have to ask for that IV stuff right away, because you already don't eat. What was it called again?" Devree said I think it was called a tampon." I started laughing and I told her "We are not going to ask them for a Tampon to go in your IV." Later I realized that Devree was pretty close because it is TPN. Devree just added A-M-O.

So my advice is to have A-M-O kind of day. A Magnificent Opportunity.
Love, Shana

Friday, April 24, 2009

The Jonas Brothers are COMING!

The Jonas Brothers are coming say 2 reliable sources. The Brothers donated a bunch of money to Target House to build a Karoke stage with all of the fancy lights and features. So the Target House worker told us that they are coming in May to have a party for the finished project. Then Elizabeth, Devree's psychologist said she heard that morning that the Jo Brothers will be at St. Judes in May. So as you can imagine Devree is sooooo excited because that was her "Make a Wish" and it may come true before going to a concert. I am pretty excited because I know that most of the staff at the hospital and at Target House know that Devree is a big fan and I think that Devree will probably get to meet them in person. So Dad you got to send the limited first CD that Devree has at home so she can get them to sign it, so she says she can have something very valuable!

Yesterday and today Devree is getting pretty beat up. The double lumen line has caused alot of pain in her right quadrant with limited use of her arm. They gave her morphine for the pain, but she was wanting more before the 4 hours were up between doses. Now today we are here at 6:30 am for the double MRI's and they will do the lumbar puncture at the same time. I am pretty sure that they will be able to get the spinal fluid this time because it will be done during the MRI. She will have to be sedated for all of this and I hope that the contrast will not affect her this time. The Lumbar puncture is usually sore in her lower back for several days. But that was last time because they poked her 3 times. We hope this time will be lots better.

We also get to learn how to clean her lumen lines and all of the extra work that goes with them today and Devree will get her first burning shot today and we get to meet with our social worker that can get the ball rolling to meet the Jonas Brothers here at the hospital possibly.

I read a very interesting book that our good friend Brenda Griffin let us borrow. I recommend it. At first you will wonder why I recommended it, but keep reading. It is a very interesting perception of God. It is called "The Shack" by WM Paul Young. (Thank you Connie.) It was on the New York Times bestseller list and it is in paperback.

Have a Fantastic Friday. I know Devree and I are looking forward to sleeping in tomorrow and hopefully we will get to see the Neumeisters today. They are visiting us from home.

Thursday, April 23, 2009

Double Lumen Hickman Lines

Bob The Builder Room

So today we are at the Surgery Place at 7 am we were signing in. This procedure today, BEN this is for you. LOTS of Medical jargon okay? So Devree gets these two lines put in close to her heart and partly under her skin and lots hanging out of her chest because this is how she will receive her chemo therapy. They will also be able to get out her blood this way and hopefully not so many pokes and IV's' She does have an IV in her arm to start her hydration and that is where she will get her anesthesia. I asked how that was and behind the nurse's back she mouthed out the words "She was terrible! She wiggled the needle around until she found something!"

Yesterday was a terrible day according to Devree. First of all they couldn't find a good vein for drawing blood. So she was poked 5 times and then when they finally found one it gushed all over. Devree goes by herself so I am repeating what she said. Then they wanted a urine sample. Devree doesn't like to give urine samples. She says "That is personal!" I told her to get used to it, because over a life time they keep asking for it. Anyway, Devree tried 3 times and finally was able to master the 2 samples they wanted. We find out that we have to give Devree 3 shots at exactly 12 noon to get her blood ready for aphresis. That is where she will give blood and they cycle it to get out her stem cells so that she can use those same stem cells to boost her health during chemotherapy. The shots will burn, they tell us. After the shots, she will get one IV in both arms and they take it out one arm and put it back in the other.

Then Devree finds out that she will have to continue the Septra, her least favorite drug that prevents a killing pnemonia, for 6 months after the chemo is all done. We are going to try it in the liquid form.

Then we go to do the MRI of her brain to see about the tumors status. She has a bad reaction to the dye in the stinking IV of the morning. She has terrible pain and her arm it is still swollen this morning. She will have to be sedated tomorrow so that the MRI can be done of her brain and spine so that we will be done at one loooooooong time.

So I have been running every minute, trying to move back in etc, that after I finally got the grocery shopping after our very long day, I ate dinner around 8pm. Devree was at home relaxing and she ate the leftover lunch. The other bad thing is Devree lost 3 more pounds at home and still doesn't have much of an appetite.

Today I had a pep talk with her on the drive here. I told her that we have to have a good attitude even if yesterday was crap! We have to have a fighting, happy attitude to beat this cancer! She agreed. I did compliment her on getting right up this early morning and for remembering her iodine bath she had to have last night. I told her that together we can do this! She couldn't have any food or drink or even drugs to help her through this morning.

For our Faith, fasting and prayers, I thank all of you. May we ask for the blessing that the chemo will go well and we will stay on track for getting home in 4 months.

Love, Shana

Wednesday, April 22, 2009

Happy Birthday to Todd!

Well we're Here! I asked Devree if we should be like the little 3 year-old girl that we saw last time and with our arms raised up and shout to everyone "We're Here!" We had a great flight and maybe we will fly on Delta again. A much nicer plane and they actually fed us a delicious lunch. We had leather seats and more leg room and no "smelly" ladies like on the way home last time.

Thank you to Brother Arnold (Celest's Dad) for pickiing us up at the airport. It was wonderful to hug and kiss on the cousins. Thank you Bill and Brenda for the use of your car again. Target House had called and left us a message that they were ready for us that night so we got at the Target House at about 9 pm. We are now in room 517 and it is a much bigger and nicer room. We even have a flat screen TV. Devree is excited to have "Bob the Builder" sheets, comforters, pillow and even 2 pictures on the wall! We think Jackson will love it. We will take a picture soon.

So our address is still the same 1811 Poplar Ave. #517, Memphis, TN 38104. So let's get the mail started!

I called Todd and wished him a Happy Birthday at 5:30 AM because that is usally the time he gets up. We are already at the hospital and will not be done until 6:30 pm. We don't think we will make it to Frisbee Golf for Mutual.

Tuesday, April 21, 2009

Leaving for St. Judes

The last 1 ½ weeks have been wonderful!!! We planned to post more often than we did last week. Devree only lost her cookies on 2 days out of the whole 3 weeks that she was home. So she had a lot of fun.

Devree tried to pack in as much fun as she possibly could while she was home. Both of the 2 times she got sick were really sad. One time was on a day that she was planning to go to a sleep over at one of her friends. She was looking forward to being together with some of her fellow Twilight fans and talking all night. All day long she was hoping to get ahead of the curve and feel better, but it didn’t happen. They were able to get together the following week though. The other time was when she was planning to have a friend from Fernley come visit her, and they had to cancel. Devree has a lot of friends, and I think she was able to visit with almost everyone.

The other bit of wonderful time at home was spent at a family reunion in California. Devree was able to chill with her California cousins. They had fresh oranges picked from the tree. Easter was fun with an egg hunt and hidden baskets on Easter morning. They all talked and laughed, and ate until they couldn’t take it anymore. Then they all hugged and said their goodbyes.

On the Monday before Devree and Shana flew back to St. Jude’s in Memphis, Tennessee; Shana organized a “Birthday/Going Away” party with the Jone’s family. Barry Jones and I both share the same birthday on April 22nd. It was fun to fill our house full of friends before the girls left. We must have had between 60 to 80 people come by for the send off party, slash B’day party. I’ll add some pictures of the party when I get home this evening.

I have to share something funny before I go. Devree went to a church dance this last Saturday. One of the boys there was teasing her by messing with her hair. She said, “Careful, you’ll make my hair fall off!” His expression was priceless. “He didn’t get it. I don’t think he realized I was wearing a wig.” Devree said.

Love you all!

Sunday, April 5, 2009

Sunny Sunday!

For all of you Mormon's wasn't General conference great? Almost every talk, I felt, was given to me and what we are dealing with right now. I was able to watch all of the sessions and only got sleepy during the last half of the last one. What powerful messages. We played a little game with Shay and Dane. We had a bag of sour Skittles and since we were DVR'ing conference we would stop and ask questions to see if Dane and Shay could answer. If they could answer correctly they got a Skittle. Of course Devree and Noble got into the game also.

I am thankful for neighbors and friends that want to support me by putting Devree's name on their prayer list. My neighbor Mary, who is Catholic, came and showed me Devree's name on her church's bulletin. She also gave me a book to read, "The Purpose Driven Life". In the L.D.S. church we have "The Purpose of Life" DVD and pamphlet. The book is interesting to see the concepts the author proves by his revised words of the bible. I really appreciate Mary's concern and feel surprised that there are people out there that have to be told that they are not a mistake and there is a reason and purpose to this life on earth as the book states.

Devree has been doing okay. She had a terrible Friday and I even had to call St. Jude's. She was in terrible pain and did the V word 3 times. Finally I got some Ativan down her and she slept for probably 8 hours and then slept for 12 hours through the night and next morning. The doctors told us that sometimes patients will have a really exhausting time about 2 weeks after you are done with radiation. That was exactly the day. But as I talked with Devree, she and I had the same hopes. We thought we could come home, and not be sick and gain weight and live a normal life for a few weeks. We were humbled once again. Devree was so sad that she had to miss a special sleep over that was in her honor. We will try again when we come back from California.

Yes Germantown ward, we miss you and are looking forward to seeing you soon. We have our flight arrangements already. St. Jude sent a schedule and Devree will be admitted on April 30th for her first chemotherapy session. That means she will be inpatient for 1 week. On April 22nd, Todd's birthday, we will be having lots of appointments to get us back in the swing of things at St. Jude's. Why do they have us be there so early and be going all day to really late? I guess they want us to be busy.

Thursday, April 2, 2009

April Fools

Well I had told the kids that since Devree and I missed being with Todd and the boys during Valentines Day and St. Patricks Day that we would celebrate those holidays here at home again. So yesterday we celebrated Valentine's day. I had set up the table the night before with a red table cloth, chocolate kisses, homemade valentines and put the cranberry juice in the fridge to chill.

The next morning I asked Shay why he got up so early because there was no school. He had this really serious look on his face and then I said "April Fools!" It was before 6 am because we like to read scriptures before Noble and Devree go to seminary. Then Noble gets out of the shower and I tell him the same thing as Shay. Noble says "Wait...yesterday was Tuesday and the day before that... then I say "April Fools!" He was fooled. Devree made Dane cry because she woke him up and said "Dane wake up! We are going to Grandma's!" He hopped right out of bed and put on his pants and then when Devree said "April Fools!" he cried. He wanted to go to grandmas house so badly.

We continued our morning with pink heart shaped pancakes and heart shaped sausages with our red cranberry juice. Devree ate and went to seminary and ironed all of Todd's shirts and went on-line and visited Terry. She was going to play a trick on Terry and pretend she didn't recognize her, but she didn't do it. Then Devree met with Brother Watts for her home schooling. Now she has lots of things to do. She had a fantastic day.

So here it is Thursday and we are all going in different directions, but with the same goal! I hope all of you and your families can say the same. Have a great Day!