Saturday, January 31, 2009

Pray Devree's Doctors Receive Inspiration

1/31/2009 11:25 PM
Today has been a very busy day for Shana and Devree. They moved into their new 2 bedroom suite. (It seems extravagant at first, but it isn’t when you realize that the sick kid undergoing chemo is sleeping all the time in the other room.) The move wore poor Devree out. She slept long and hard while Shana went out into their new world and started collecting the things that they need to set up house.

We are so grateful for the car that Shana is able to use. Our new Germantown Ward has been so supportive. Thank you so very very much!!!

Aunt Danawn called with a wonderful question. This Sunday is “Fast Sunday” for all of us Mormon type folks. (Fasting is when we skip two meals. The sacrifice helps us feel nearer to our Heavenly Father, and it is an excellent time to pray for those things that are really important.) She asked if there was something specific that everyone should be fasting and praying for. My first thought was, “I want to go for the whole enchilada!!!” As long as we are praying for miracles, I want to pray for a complete recovery.

I searched my heart more… A very important thing will be happening in the next couple of days. Devree’s doctors will be deciding her treatment. There are so many of you praying for her… Will you please pray that the doctors will be inspired as they decide on Devree’s treatment plan? I’m not sure how often the names on a prayer roll change, but it would be perfect if her name were on all those prayer lists again during this time.

We keep learning more about this world of cancer fighters. Our boys have received little packets from an organization called “SuperSibs!” (http://supersibs.org/) They are concerned about siblings that develop emotional problems because Mom & Dad are putting all of their energy into their child with cancer. Some kids really begin to feel lonely and forgotten.

Anyhow, our boys all received a magnet that lists all of the different emotions that a person could possibly have. There is another magnet in the shape of a window frame. Each of the boys can put their window frame around the emotion that they are feeling.

Noble led the way and put his up on the fridge and selected the happy face. Shay and Dane decided to follow his lead. Shay and Dane selected “happy” too. Whew!!! I’ll have to keep an eye on their charts. Shana and I have really been trying to focus on how the boys are doing.

This is too long, but I have to share one funny thing with you. Mr. Mom has been doing laundry today. When I finish folding and hanging up the whites, I notice that Shay’s white shirt for church is not in the load. “Shay! Where is your white shirt? It wasn’t in the laundry.” I holler. “Ummm…” he says with a smile, as he goes to look for it. Yes, it was rumpled in the bottom of his closet.

Yeah! The same thing happened last Sunday too. So I decided to teach him a lesson, and have him wash it by hand. His face immediately brightens, “Can I wash it in the shower?” Hey! I thought it was creative. I got his white shirt clean, and Shay took a shower. That meant I could cross two things off my list. Sorry Shana, what can you expect, we’re guys. LOL




Love you all!
Todd

Friday, January 30, 2009

Missouri Ice Storm

I never mentioned that I flew stand-by into St. Louis, Missouri and then drove to Memphis, Tennessee to meet Shana and Devree at St. Jude. It was a little exciting because of the 3 day long ice storm that was coming in.

On the way back to St. Louis I saw the after effects of the ice storm. I drove for 45 minutes looking at downed power lines, and telephone poles that had snapped. Trees had snapped branches. The governor of Missouri declared it a state of emergency. Power company trucks from neighboring states were helping with all the work that needed to be done.

Now I understand fully what freezing rain is.



You can't really see how thick the ice is in this picture, but you can see that the tree is snapped at the top.




Fascinating




Isn't interesting how the ice froze in the shape of the cable and then separated later.





This picture shows how thick the ice is on the fence.





Look how this bush was encased in ice.





This is how much ice that freezing rain created on weeds that were sticking up.





Love you all!
Todd

Video of "Famous Tumor"

We got the link to watch the news cast. It was on last night in the Bay Area. Here it is. I liked it because it barely had me Shana and more of Todd. But under all of that blue stuff in the operating room is Devree...somewhere. The funny part is to listen at how many times the newscaster lady messes up Devree's name!
http://abclocal.go.com/kgo/story?section=news/health&id=6631969

T.G.I.F. Thank Goodness it's Friday!

Well our little Devree made her mom feel better last night after that bad day. She hugged me and became little Polyana and said "Mom what GOOD thing happened today?" I thought and thought and I came back with "The berry and mango gelato was really great!" She agreed and we continued watching an old movie "Yours, Mine and Ours." We commented that there is the TLC channel that has the Duggar Family that actually have 18 children now. We slept pretty well after the exhausting, emotional kind of day.

Today has been better. They gave us a much lighter schedule. We have a huge break but once again they are starving Devree because she goes through radiation simulation this afternoon. Our schedule will always be late in the afternoon because there are so many babies and younger children that go first. They will even give her the stuff today to show contrast.

We are excited to move into the Target house. There are 2 Target houses which are like 5 miles away and we are hoping for the newer house, but we are happy with what we get. Devree will have her own room and I will have my own room and it will be like a small apartment. The Target house does have a teen room, game room, music room (a grand piano donated by Amy Grant) and a library (donated by Tiger Woods). We are finding out about mail and will give that information soon. As far as flowers, fruit baskets or edible baskets, they are not allowed. The gift shop and the get well emails, we don't know about yet.

Devree is excited because she has the same science book as DHS. (She says "NO! But I am excited because I met a new friend.) She has to read the play "Romeo and Juliet". I told her "I will read with you. I will be Romeo and you can be Juliet" Devree said "That's a little weird." We tried to cheer us up by reading PEOPLE magazine and found out one poor baby boy was named Pilot Inspektor and then the last name. Devree wants to tell you it is a poor celebrity child and not a patient here. We still crack up thinking about that poor baby boy.

Thank you all for your comments. It seems when bad things happen more people make comments. Manny that was a great analogy. I am so glad that you are another son along with Kyle. Thank you everyone for your support in so many ways.
Love, Shana

Thursday, January 29, 2009

Thoughtful Thursday

Well this day turned out to be a little worse. Devree's MRI showed 3 spots of cancer on her brain that have grown since LPCH and 3 spots on her spine that were not on her previous MRI's She is already at high risk so this is just some more bad news. There are a multitude of bad things. The radiation and the chemo both cause hearing loss. The radiation and chemo both cause sterility. The lumbar punch wasn't able to get any fluid with 3 tries by experts. But because of the other news I don't think they are even going to worry about it. She starts radiation on Wednesday with 33 days of radiation and higher amounts. The Radiation Therapist suggested to shave her hair immediately because that will help with getting the right parimeters. Devree said she will shave her head on Sunday after church. She says "I'll get to adopt!".

I continue to read my scriptures and say my prayers. I am thankful for all of your faith and prayers to help all of us get through this.

Loser Lumbar Puncture Day

Well today we are a little bummed. (Devree asks "A little? We are majorly bummed!") We got up insanely early to tell Dad goodbye and go to her first MRI at 6:45 AM folks! (Devree says which is "4:45 OUR TIME!") I keep telling her to think Memphis time. So when we get here they say they are sorry because when they called us back at 6pm last night to xray her skull to make sure there are no metal peices, the radiologist was not here to read it. So we went back through the freezing cold about 300 yds to the Grizzly House. I did some laundry and Devree went back to sleep all for about 20 min. They called us back. We go do the MRI. I was smart and wore my running shoes to slip and slide back and forth and getting lots of exercise running back to finish laundry, running back to pickup Devree. Now to sit and wait for the loser lumbar punch! Everything may get pushed back and my laundry is not quite dry so that still needs to be done, when I have another long wait.

The bright side. The Grizzly house, (which I find quite ironic because Tennessee doesn't even have Grizzly's) has huge washers and dryers and laundry soap for FREE for us. The washer and dryer are only about 20 steps from our room. They have big continental breakfasts and the food here at the cafeteria couldn't be better. Poor Devree doesn't get to eat till after all of the procedures but she informed me we are going to eat a mango gelato FIRST!

We couldn't have a better support system. The staff are all very awesome, positive, friendly, smiling and guess what? They have lots and lots of people skills! I was telling Breck and Celest it is such an amazing place because everyone is so specialized for the exact things we need. Devree complained about the "Rehab" but those people are right here in the "E" clinic. The staff is all highly experienced with brain tumor, brain cancer and how it affects everything in your body. So when she visited the speech therapist, we learned how the brain is thinking for speech, processing thoughts, exercises for her tongue and exercises for her facial paralysis. The physical therapist, worked on all of the muscles lower than her head. The audiologist is a professor, great musician along with her husband who is a professional musician. She understood our concerns with the radiation and chemo causing hearing loss. She understood how Devree loves all types of music except as uncle Ky calls "rap and crap". Even though she had to tell us bad news she mixed it with good news that said she has seen the hearing come back when the nerve endings have healed in the brain. She understood why we want her hearing checked and not lost through this process. She has published articles about the effects of cancer treatment on hearing. So don't you think it is amazing what kind of people we have here for us?

I just got a call that we are getting moved to the Target House tomorrow. That is a good thing. Breck said "Hey request it because it is newer." I wanted to move there because we can stay there the whole time hopefully and not move again. They give you more money for food and other things too. We have to check out by 11 am and we don't get to move in till 4pm. THANK YOU BRENDA for lending a VAN to travel back and forth!

Wednesday, January 28, 2009

Day 2 at St. Jude's


The Ky Rice kids with my family





The Ky Rice's eating breakfast





Me with my cool kid headphones in the audiologist's booth





My Bumble bee band aid




Dinner with the Breck Rice's





Me with some of the Breck Rice's (this one includes Jackson!)





Me with all the Germantown Young Women





Tayzia being our Chauffer





Welcome to Memphis!





Livin the Glam life in Memphis





Tayzia and I enjoying the low prices of Target!





Me and Mom w/ the Breck Rice cousins(minus Jackson)




So today we had to meet a speech therapist. It felt like Gifted and Talented testing for special ed. I just had to say what it was a picture of or what verb they were performing. Even though it was an easy test I didn’t get 100%. >=( oh well. I probably got a 98% because you never see someone developing film or directing traffic these days. I’ve also grown up with satellite dishes rather than an antenna. Whatever I still can’t win at the finger-to=nose game and that bothers me.
Then I had to go get blood work done. I don’t like that. Whenever I have to go get it done I would tell people I have to go see the vampires. Actually the nurses are really nice, the needles aren’t. Heh, today it was kinda funny because they gave me a bumble-bee band-aid. I started laughing to myself and when they asked why I said “It stings a little and you put bees on it!”
Then I went to a physical therapist. He was in rehab services and I didn’t like that mom kept saying “we have to go to rehab.” He told me I was strong. It made me feel good.
Then I went to an audiologist. She told me flat out that I was deaf in my right ear. That wasn’t cool…BUT she said the only thing wrong with my ear is the nerve so if my nerves heal I could get my hearing back! And that’s really good!
Then I met child life services. They’re my party people. They look out for me and make sure I have a little fun in my week .Pshhh, like I need their help! Just kidding.
Then we had lunch really quick and we were late to school but I guess it’s ok because my teacher wasn’t even sure if I was coming. We just talked more about my schooling plan.
Then I met my nutritionist. Generally she told me to keep up the good work because I’ve been eating healthy.
Then I went to a MRI which was no fun because they made me wear a hospital gown and I never held still enough for them. I fell asleep with the indigestion noises and all and they got mad at me. Eh, you just can’t please some people. Well, tonight I get to go to Young Women at Tayzia’s ward so I have to hurry off, see ya!
~Devree (Little Miss Alice)


Busy Schedule

1/28/2009 11:00 AM
It is amazing at how busy they keep us.
Day 1
Collect Devree’s Information: Shots, Family Doctor, Blood Pressure, Weight, Family’s Medical History, etc.

Document History of Devree’s Cancer: What did we notice first? What doctors were seen? What work did Stanford do? It felt like a, “getting to know you”, visit.

Meet Dr. Armstrong (Pediatric Neurosurgeon/Oncologist): Talk about Devree’s neurosurgery and recovery. Testing to determine the status of her neurosurgery recovery (finger game, etc.). Discuss the testing that will be done this week. Question and answer time.

Meet Our Clinic Chaplain: Wonderful man!!!

Patient Services: Set up housing and meal plan

Register Devree at St. Jude School: Meet her teacher, and learn about school

Meet Our Anesthesiologist: Learn about diet before anesthesia for Lumbar Punch/Spinal Tap.

Devree’s Nap Time: She was totally exhausted after her long day.


Day 2
Meet Devree’s Speech Therapist: Vocabulary testing shows that she has not forgotten any words. She’s still a smart cookie. J

Blood Work: Sorry about the needles Devrs.

Meet Devree’s Physical Therapist: Devree still can’t pass the heel-to-toe “Drunk Driving Test”. She still can’t win the finger game. (She is getting close though!)

Audiologist: Another hearing test. They plan to watch Devree’s hearing quite closely. The radiation and chemo can both harm her hearing, and they want to do as much as they can without hearing loss.

Child Life Visit: Devree’s party people. (They provide activities and fun to keep our spirits up.) We promise not to tell them that they just can’t compete with Memphis Rice’s and our Germantown Ward.

School Time: Awww Mom do I have to go? They told us that if Devree isn’t feeling well, she is allowed to sleep in class and make it up later on. Yes, they really said that.

Nutritionist: We get to visit about how to feed Devree’s

Take MRI: St. Jude has to do their own research and check Devree’s status. Our support group told us that they always feel nervous about each test.

Devree asked me if this will be her life from now on. Her schedule is pretty fast paced and she can see how it could get old after awhile. The busy schedule is supposed to ease up once all of the initial testing is done.

Love,
Todd

Tuesday, January 27, 2009

Devree's Doctor is Awesome!!!

1/27/2009 5:32 PM
Our doctor is fantastic! He is a pediatric neurosurgeon/oncologist. It was wonderful to watch him work with Devree. He told Devree he wanted to do a few more tests, and she jokingly groaned. The poor girl is getting tired of demonstrating the things that she can’t do.

“No, not the finger test again!” Devree says jokingly. “Why don’t you like the finger test?” Dr. Armstrong asked. “Because I always lose that game,” came her reply. He laughed and told her, “I’m going to go home tonight and tell my wife that I met a great girl today, but you know what? She couldn’t do that finger test very well.” (The finger test requires Devree to touch her index finger to the doctor's and then touch her own nose. He keeps moving his finger.)

Of course that got Devree smiling, and she did the tests that he wanted to see.

Dr. Armstrong said that Devree does have a 35% chance of the cancer coming back, but we will worry about that “when and if” it happens. Everything he said was positive. He said that St. Jude was blessed to have the radiology team that they have. Other hospitals tend to send the children to an adult radiology team. He likes having radiologists that are keenly aware of how to work with kids. Another thing that he likes about our hospital is Dr. Gajjar’s treatment plan.

They (St. Jude) have learned that they can be effective using tight parameters (Radiating only the cancer speck and not overshooting the area) with their radiation. This will be a great benefit for Devree. Another wonderful benefit here is their procedure of harvesting the patient’s own stem cells to help them heal later. The chemo therapy will negatively affect Devree’s bone marrow. Her body needs functioning bone marrow to help her heal, with the new blood it produces. The stem cells will be used to heal her bone marrow from the chemo.

I will be returning to Dayton late Thursday night. I feel very comforted by the housing and meal plans that St. Jude have made for Devree and Shana. Our Hamblin girls are in very caring and safe hands here. I agree with Season. Making the trip here was worth all of the work.

We absolutely love the team here at St. Jude. Although all of us are in similar situations with cancer, everyone is upbeat and smiling. The mind set seems to be, “We all have trials and challenges in life, and this is our challenge.” One nurse on the St. Jude staff, said that most of them felt that it was a blessing to work here, and that it was their calling to bless the lives of the people that come here.

Love,
Todd

Radiation Vacation

So today we had our first day at St. Jude. I felt like I was back in school again. We first went and they gave us our schedule for the day. They kept us very busy from 7 am till 3pm. We went and met our nurse whose easy to remember because her name is Lindsay. Our doctor who is Dr. Armstrong. A real blessing because he is a Pediatric Nuerosurgeon Oncologist. Wow! Three doctors rolled into one! But you know what the best thing is? He has worked at 3 other specialty children's hospitals. He agreed that St. Jude's is the best to treat Devree's case. He is quite handsome with black hair and big blue eyes. Another best thing is he doesn't have halitosis. He related well to Devree even teasing her and amazed at her reply for what she has named her "RADIATION VACATION". Dr. Armstrong said that is the first time he heard that one. The day continued to meet the anesthesioligist, one of the high school teachers where she only has to go like 3 hours a week and if she doesn't feel up to it, she doesn't have to be there. We met the chaplain who is a wonderful man and knew who Chase Burch is and he loved the "Radiation Vacation" too. A very positive individual and just wants to be there to strengthen our faith. Oh I forgot to tell you a really wonderful part of St. Jude is the cafeteria where..."Are you reading Noble, Shay and Dane?...they have a gelato stand. It has the best mango gelato I have ever tasted! Tonight through Friday we are staying at the Grizzly house and then we don't know if we will stay at the Ronald McDonald house or the Target house. The Grizzly house is named after the Memphis Grizzlies (Basketball) and our room is faaaaancy!
I can't thank Breck, Celest, Tayzia, Talon, Kallie and Jackson enough for the wonderful welcome and the opportunity to meet several wonderful people in their ward. From lending a car, meeting the whole young women including the leaders and the Relief Society President, I know we will enjoy this time in Memphis and Germantown. We already are thinking it is like a vacation.
Loved all of your comments. Jana, it was wonderful to hear from you. Thank you to the "other brother" too. We could tell it was Manny before you said it was you!
Love, Shana

Monday, January 26, 2009

Monday in Memphis

So yesterday Devree and I were fortunate to fly to Memphis. A freak snowstorm affected all of the other flights before ours at Reno. I found it quite strange that all of these people were hanging out in big huge fur coats. Then I found out that everyone had been to a "Hunters" conference. I started to notice Cabela caps, bags and these green "Sportsman Warehouse" bags. It started to make sense. Our flight was not delayed and we flew a very crowded flight to Chicago. The poor little lady that sat on Devree's non-hearing ear couldn't understand why Devree was not responding. She reminded us of Grandma Rice and we chatted alot.

Our flight from Chicago to Memphis was 15 minutes early and Breck, Celest, Tayzia, Talon, Kallie and Jackson all came to the airport even though it was 10:30 at night. They each had made us a sign but poor Jackson had fallen asleep in the car. Celest took pictures but I am not computer literate yet... to figure out how to put pictures on. Kallie had chosen a bouquet of purple flowers and it was quite the welcome. Of course Celest always makes us feel like we come to a hotel to stay and it sure is nice to be loved and welcomed to the next part of our adventure.
Love, Shana

Well Mom told you all the important factors of our story! Flying was a LONG LONG day. At least it was one day rather than the three or four if we drove...i kept asking Mom "Are we done yet?" I was dead tired because Miss Teara kept me up all night. She didn't mean to...i don't think...Just kiddding. Well since i'm so used to Dayton time I wasted half the day sleeping. Oh well we spent half the night being greeted in an airport! It was a crazily empty airport compared to Reno and Chicago with all the delayed flights. Talon was so nice to let us have his room! Big thanks to Talon for his room and Uncle Breck and Aunt Celest for letting us stay with them.
~Devree (Little Miss Alice)

Sunday, January 25, 2009

Devree & Shana Fly Out

Today is the day that Devree and Shana leave for Memphis. As we were trying to get all of the information from St. Jude so that we could make flight arrangements, they told us that they would be buying tickets for Devree and one parent. Taking the same last minute flight with Devree and Shana had a price tag of $1100. So I had to make another plan, because we have to plan for long term. That meant making more inexpensive flight arrangements. Thank you Matt and Amber. (This is the part where sometimes it is hard to share.)

I’m sorry, but I have to throw in an extra paragraph here. Some of you would do whatever it takes to be on that plane with Devree and Shana. One of my new friends went with his wife and daughter for months and sacrificed his job to do so. In his situation, it was probably the right choice and made sense. We are planning for our situation.

As I wrote that last paragraph, it reminded me of my Dad’s analogy of “An Old Man, A Little Boy, and A Donkey.” As they started out, the old man was walking and the little boy was riding the donkey. As they passed traveler’s going in the other direction, they heard. “How terrible, that little boy is making that poor old man walk.” So the little boy got off the donkey and let the old man ride. The next people they passed said, “How terrible, that old man is making that poor little boy walk.” So the old man got off the donkey and they both walked. When they passed the next people, they heard, “How ridiculous, one of them should be riding that donkey.” It all depends on your perspective.

I have been learning how all of you feel. It is so hard to not be with Devree. She is just wonderful to be around, and I want to be with her so I can help. Then my thoughts are… If I can’t be with her, I want to get as much information as possible. The problem with that is… That I want to see a picture of Devree everyday, but I know that she won’t always feel ready for the camera. We can all relate to that.

Well, I need to go and help the girls get to the airport.

Love,
Todd

Saturday, January 24, 2009

Our Family Pulling Together


1/24/2009 10:11 PM
A local cancer support group sent a care package with resource information for our family. It is organized by people who have gone through experiences with cancer. So they reach out to families like ours.

Sometimes the siblings of kids with cancer start to feel alone and neglected. So they sent gifts to Devree’s brothers. They all got journals to write their feelings in, and they all got some neat teddy bears. Noble and Shay didn’t say much about their bears, but Dane has really latched on to his.

When I read Dane his bedtime story, he asks me to wait while he takes his bear’s shirt off to get him ready for bed. The next night when I went in to read him his story, his bear was dressed. That has happened since he got his bear. It is enough out of the ordinary that it caught my attention.

Shay and Dane have always enjoyed one-on-one time with Shana and I. Lately they seem more interested in quality time with Mom and Dad. Dane especially seems to be comforted by spending time with us. As a result, Dane has parents that know more about his Xbox video games than they ever dreamed of learning.

While we were at Stanford with Devree, we asked Noble to take Dane to the movies while Shay was spending the night with a friend. That was the highlight of Dane’s week. When we asked, “What was your favorite part of the week Dane?” Without thinking about it at all, he said, “Going to the movies with Noble. We played in the arcade at the theater, watched a movie, and then we went to Dairy Queen. I got to have a whole Blizzard for myself.” Shana and I were so tickled with his answer. He just love’s his big brother.

Devree has been so sweet to all of us. She has been so kind about sharing her things with her brothers. Noble was invited to a party today, but chose to come and watch “Ink Heart” with the family instead. He wanted to spend time with Shana and Devree before they leave for so long. Noble and Devree are pals, and it is fun to listen to them as they joke back and forth.

It just feels like our family has really been pulling together.

Love,
Todd

Friday, January 23, 2009

Waiting Day, Again

Guess what? IT’S DEVREE’S TURN! It’s also raining right now! YAY! My dear parents didn’t mention that the day I went into surgery they (the doctors) had me change completely into hospital garb. So I did. There was no bench or anything in the restroom so I had to set my clothes on the sink to keep it off the floor and out of the toilet. Sigh. It was an automatic sink so it turned on with my clothes in it. They got all wet. You can’t tell in the picture but I’m wet.
Now that I got THAT off my back, Uhhh…Ooh! We’re leaving for Tennessee on Sunday afternoon. We should get there at about 10:45 pm their time. Then I have an appointment at 7am…their time. Which is 5 my time…I hope I got that right…anyway, it kind of stinks.
My head kind of hurts... I don’t see why it should; I’m all done up with pain medication. Sigh. OOH! My stitches are finally dissolving! Well…parts of them are anyway…and my hair’s growing back! Then it’s gonna be gone…and I’ll get a cool Alice wig! I missed the boys….until I got back…Just kidding. =) Nah they're great, I wonder if they’ll miss me…Anyway I want to thank you guys again for all the love, support, and prayers going into this! You guys are great and I love you!

~Devree

Lifting Hands



1/23/2009 9:16 AM
Today I have been feeling a little blue. Sometimes I just have to sit and figure myself out.

There are so many reasons to be happy. I often start to say thank you again to so many of you kind and thoughtful people, but then I get stuck because there are too many wonderful acts of service to list them all. Heavenly meals have been brought to our home by countless people. The boys have been swept away with help with rides, food, offers to come over and play, and more. Thoughtful gifts have been sent to help Devree through boring chemo-therapy sessions, to help her spirits with bright colors for her room (As a dad I don’t fully understand the happiness that Devree has over bright colorful pajama pants and pillow cases. But I am so grateful!). Shana and I cried with gratitude at how thoughtful the family portrait was. I have agonized over receiving financial help, but thank you. We just need to get to the open arms at St. Jude, and you are all helping us to take care of our concerns here, so that we can get there.

Well, there go my blues. lol

It feels kind of like the picture of many hands lifting a body over the top of the crowd, and passing the person from hands to other hands. You almost worry that the person will fall, but they don’t. The many hands are able to keep them up. How can I say “Thank You” enough, when there are that many hands lifting?

I did figure out why I was blue though. The calm time is almost over. I am going to miss Devree and Shana while they’re gone. It is so wonderful that I will be with them during that first week.


Love,
Todd

Thursday, January 22, 2009

Memphis on Monday

So Todd, Devree and I are flying to Memphis on Monday. We will see Dr. Armstrong on Tuesday with some preliminary other things that need to be done. Dr. Armstrong is part of the group with Dr. Gajjar. St. Jude will pay for the airfare for Devree and I, but we will have to pay Todd's airfare. Todd will come home on the weekend. Devree will start her 6 weeks of outpatient radiation very soon. Then we will get a 2 week break and fly home. After the two weeks, St. Jude will do the stem cell harvest. We go back to 7 days of inpatient where she will get her first 4 days of chemo under hospital care then she will get 4 months of chemo on the outpatient basis. St. Jude will give us a place to stay from the get go because Devree will be highly susceptible to germs. That is the plan of attack so far.

Last night we went to a Children with Cancer support group in Reno. It was very good. They had breakout sessions and the kids went to different groups while the adults had their own session. We are just the babies with this prognosis. Some have been dealing with it for 5 years. But we had the oldest child with it. Most of the kids have leukemia and there was one 9 year old girl with a different type of brain cancer. She is the one that has had cancer the longest. They have stuck with LPCH. I felt bad for them. They were adamant that we should stick with LPCH but you know how I feel? I feel sorry for them because they have been going through this for 5 YEARS!

Anyway the kids had fun. I laughed at Dane though. For his group he put playdough in a balloon and squeezed out all of the air and then someone tied a knot in the end. He tells us "This is for my anger management. I can squeeze this whenever I get angry about Devree." He won't even let us touch it. This morning before school he is running around and asking "Where's my anger management?" He finally found it. It is funny, because out of all of my 4 kids I would say Dane is the most easy going. He certainly doesn't get angry very often.

Wednesday, January 21, 2009

Formally Accepted by St. Jude

1/21/2009 11:13 PM
Today was a wonderful day. I went by my office to get some information that we would need when filling out paperwork. What a wonderful group of people I work with. They had all chipped in a little to help with things in the short term. We feel encouraged by St. Jude that we will be able to deal with things financially long term. I didn’t leave without receiving many hugs and heart felt words of encouragement. I am so grateful that everyone has been so understanding and supportive. As I left, my heart was full thinking of how kind and caring these people are.

Our good friend Shannon Quilici came to visit and she was an answer to prayers in many ways. She has had to overcome paralysis in her face. Her smile is so sweet today, that you would never guess that there was a problem. She did so much to lift us through this difficult time.

Then we got a call from St. Jude. The paperwork is in!!! We need to arrive in Memphis, Tennessee on Monday. The idea is that we need to be rested and fresh for our first appointment on Tuesday morning.

Season told us, “Chase says that the spinal tap hardly hurts at all.” Chase is an expert. She had the same cancer Devree has, and she beat it. She is a little hero and she is inspiring us. Season met another high risk Medulloblastoma patient (like Devree) when Chase was being treated. This girl has been cancer free for 4 years now.

The last good thing for today was the cancer support group that we got to meet locally. What wonderful supportive people they all are. I had to wince just a little though. They are dealing with things that I am not letting myself think about yet. We went as a family. They had the parents, teenagers, and younger kids broke into separate groups. We had a good enough experience that our whole family plans to go again next month.

I love you all!!!
Todd

Flowers Bloom

Well still no word about when we will be leaving for Memphis. Our family doctor did fax his paperwork yesterday. Thanks again to Lynda for all of the beautiful portraits. So many of you have commented on them. Thanks to Emily for a fabulous dinner last night. She gave Devree a very appropriate card. The outside said "I know you are going through a lot right now"... Open the card and the inside says "But the most beautiful flowers that ever bloom had to go through a lot of dirt to get there." According to Cyndi "And MANURE!" So we are back at the waiting game.
Love, Shana

Tuesday, January 20, 2009

Our Stanford Team Got Fired???

Tuesday was a busy day! We have been excited to share the news about St. Jude. When we shared this news with our doctors at LPCH, we really didn’t expect the reaction we got. Their faces fell. There was a marked change from happiness about Devree’s progress, to we can’t believe we are being fired.

You can’t imagine the gratitude and love we feel towards this team that gave us back our little girl. They took our world that was upside down, and helped us to get our feet back under us. Devree’s neurosurgery was a wonderful victory in our 3 part fight against this cancer. The last thing in the world we wanted to do is make them feel bad.

But this is the right path for Devree, and they will just have to forgive us. And we forgive them for the little difficulties that we had to go through today.

When you fire your team at Stanford, they are not very motivated to help you transfer to St. Jude. We were told that they would not give us a referral to St. Jude because it was not their idea. As a customer, we made that change all on our own. Therefore, it would now be our job to collect all of Devree’s information for St. Jude. What does that mean?

Well, today we learned what that means. We were told that we needed to call 1 phone number for Pathology, and collect all of the information there. Another number was for the Medical Records department. The biggest shock was when we were told that we needed to physically visit Radiology to request for Devree’s MRIs on a CD. The CD would then need to be over-nighted to St. Jude. I asked if I would need to drive 5 hours to do this in person. The answer was, “maybe so?”

I had to acknowledge that our “fired” team didn’t have to share all of these numbers with me, or explain the process. So I thanked them for their help. However, I couldn’t resist mentioning that this process was not very customer friendly. The person on the other end of the line seemed rather at a loss for words when I shared my frank observation. So I went on to ask if the change in helpfulness was because they felt kind of fired. Their response was that, in effect you actually did fire us. Sigh…(from Todd)

On the positive side, St. Jude was wonderful. They took down all of the phone numbers that I had collected, and I was informed that they would take care of the rest. That left me 2 tasks that needed to be done before the transfer was complete. I needed to sign paperwork and fax it to St. Jude, and we needed to get a referral from Dr. Bower. Whew!!!

The transfer will be complete tomorrow morning. St. Jude will then help us get pre-approval from our insurance, and schedule our first appointment.

WooHoo!!! Memphis here we come!

Love,
Todd

Our "Devree's Home" Celebration



Okay here it is Tuesday and I thought I would let everyone know what has happened this weekend. Devree decided to go to church on Sunday. She went to sacrament meeting only and tons of people came up to hug her and talk to her and Todd gave a report in Priesthood. Devree also has informed us that she will be going to Young Women's tonight too. There have been people dropping by visiting, bringing gifts, bringing desserts and even Saturday we had dinner waiting when we finally got home. How lovely. Shay commented today "It seems like Christmas everyday! People visit and bring gifts and bring us good things to eat." So I think he hit the nail on the head.
We had friends from Fernley that have visited and called and one lady in our ward is a professional photographer and has photographed numerous families in the ward. I have talked to Todd and have wanted a new family portrait for about 2 years since our last one is 3 years ago. We just didn't have the time or the money. So her name is Linda and she called me and said some families in the ward wanted to donate a new family portrait because they knew I wanted one. We made sure that shirts were ironed and everyone got a haircut by me. I went to get my haircut. The stylist asked "How are you today." I gave her a run for her money and said "Not so well. My daughter has cancer and we are having our family portrait taken. I need a new doo that is avantgarde and makes me feel good." She started cutting and made the top shorrrrrtt. Then she cut the top again. Then she cut some more off the top and then some more!! Now I am spiky but it definitely is avantgarde. So yesterday on MLK day Linda took some wonderful portraits outside right where we catch the train to Virginia City for those that have gone with us. If you would like to look at them, but don't focus on my fat bottom half, you can find them at http://www.bluelakephotography.typepad.com/
We have made numerous phone calls and we have tried to get everything arranged for Memphis. Just as I thought would happend, Dr. Russo the main oncologist that we spoke to at LPCH, was a thorn in our side. She said their department wouldn't give us a referral and we needed to call all of these numbers etc and we would have to personally go back to the hospital to get the CD of all of the MRI's etc. Well Todd called St. Jude and the assistant of Dr. Gajjar took the numbers and went with it. Hallelujah! She is even going to find out about insurance. YAY! Dealing with insurance is worse! We don't have anything final yet. We will let every one know.

***


I Love This Picture: It reminds me of all the, "my little girl hugs" I have received over the years.

This weekend has been wonderful! We decided to take the weekend off and have a Devree’s home celebration. We cooked an enormous spiral cut ham, which we all love!!! Devree’s special request was a huge fruit salad that would last all weekend.

We had some visitors drop by to see Devree. I hope everyone was understanding about our short visits rule. Our girl would start getting tired after half an hour, so we had to look out for her.

When only family is around, Devree would close her eyes and sit on the couch just listening to everyone. We asked, “Devree, do you want to take a nap.” She would answer, “No, I don’t want to miss anything.” She is getting stronger everyday.

On Sunday night we got a call from Sister Thomassen. She is an excellent photographer that does family portraits. It seems that some friends in the Ward (church), all chipped in for us to have a family portrait done. We don’t know who you are, but “Thank You!”


Love,
Todd

Saturday, January 17, 2009

Finally Home 1/17/2009

So we are finally home and everything is clean courtesy of the Relief Society, a dinner was brought in and the boys are not in too bad of shape. Although Shay was wearing some pants of Noble's and please forgive Shay's orphan look. Anyway it was so wonderful to see the boys, and hug them and talk to them. So Devree had a good trip home. She loved talking and hugging the boys and especially Noble who she is very close to. Thanks for all of your comments and love, support, faith and prayers. We love you all.
Love, Shana
***

1/17/2009 8:54 PM
We are home! Noble, Shay, and Dane are so happy to see us. I love to watch Noble and Devree visiting. Devree did get tired, but she didn’t want to go to sleep. She just wanted to be with the family. It is so good to have her home.

We appreciate the many kind acts of service. You have made dinner for our boys, and you have invited them into your homes. Some angel souls came in and cleaned our home so that Shana wouldn’t have a heart attack, and there was a prepared dinner waiting for us. The cards, and gifts, and flowers, and comments… we feel so very loved and supported by all of you.

Starting Tuesday, we will be in a flurry of activity as we switch from the Stanford LPCH team to the St. Jude Children’s Research Hospital. We will be working on insurance pre-approval, a doctor referral to transfer Devree’s information, and we need to contact St. Jude’s social worker so that we can be scheduled for the Ronald McDonald house in Memphis.

The plan for this weekend however, is to be together as a family. Devree did tell us that on Tuesday she will be going to attend her Young Women’s group at church. She wants to be with these young women that love and support her so much.

Thank you all!

Love,
Todd

Today's Goal is Driving from Palo Alto, CA to Dayton, NV.




1/17/2009 9:01 AM
A Devree is chillin in her Jonas Brothers hat turned into a, "Dad not now!" picture. I didn't realize her expression until posting this. She smiled the first time. Honest!

Devree and Jonas Bros hat.

In spite of all this "other news", we have been happy because Devree is perking up and starting to smile. When you are only allowing yourself to fight the battle one day at a time, that is a wonderful day. Right now we are in the lull before the storm and we are enjoying every minute.

I know we are supposed to be positive, but during this calm happy time, it has given me time to think a little about our worries.

Making this change from Stanford’s Medical Facility to St. Jude Children’s Hospital is the right thing for Devree. It is difficult though. The team here at LPCH has taken us from a place where everything is out of control, to a place where we are extremely supported.

Our Social Worker Tova has done so much to support us. She is there when we talk to the Oncologist. She is there when we get bad news. She helps us find out about programs and resources that help us resolve our concerns.

If I have a question I can go to the library and within minutes they hand me books that answer the questions. There are people that come by to ask us if Devree would like to be involved with crafts. No matter what our concern has been, we are quickly introduced to someone that can help.

Our Neurosurgeon Dr. Edwards has been so wonderful. Now he won’t be available to answer questions about neurological questions like the tingling face and tongue.

We also need to transfer Devree’s history and continue forward without wasting any time.

Now Shana is being the strong one and reminding me that our goal for today is to get Devree from Palo Alto, CA to Dayton, NV. I am so thankful there are two of us.

Thank you again for all of the prayers and support. Devree was just saying how she loved Aunt Mary’s comment yesterday. Thank you so much for your kindness and support.

Love,
Todd

***



We are actually leaving now we will be in the car at 11:00 AM.

Friday, January 16, 2009

Let's Get Out Here!!!

1/16/2009 8:55 AM
We were awake in the motel room from 3:00 – 4:00 AM. If we wake-up to go to the bathroom or anything, our minds have a million thoughts running through them. Anyway, we didn’t get to Devree until 8:00 AM today. We overslept.

I asked Shana, “What we should put in our blog. What is our game plan for today?” Devree immediately said, “Today’s game plan is to Get Out of Here!” Our sweet Devree wants to go home (She wants to close the door to her bedroom, and finally get some sleep).

We are so happy so see the day-to-day progress. Devree has been tired and groggy. Up until now we have been happily watching her sleep. But now she is having longer stretches when she is awake.

This morning Shana asked, “Do you want me to come over, hold your hand, and give you kisses?” Devree said, “If you want to. I don’t smell very good.” That sense of humor is more like the Devree we know and love.

Love,
Todd
***
1/16/2009 12:20 PM
We have some good news to share. Aunt Tammie has a friend in her Ward (church) named Season. We like that name. Unusual names are our favorites. Season’s daughter Chase was diagnosed with the same cancer Devree has when she was 10. Chase is now 12 years old.

Shana had a good visit with Season and then came back crying with happy tears. This is the first person Shana has talked to that really knows what this is like. Devree told Shana to not cry (Because Devree wants to stay positive). We had to explain that they were happy tears. Shana said, “This mother and daughter have gone through what we are going through. Chase got better!” (Then Devree’s eyes got misty with happy tears too)

Devree really does not like being “a sick kid” (she calls it). She said, “I hate when people hug me and cry like I’m going to die. I AM NOT GOING TO DIE!” I admire the spirit of my little girl. So you can all love Devree, she likes that, but you can’t cry like she is going to die.

Oh, back to Season and her story about Chase. Chase’s father got online and searched for the best hospital for treating pediatric cancer. It was St. Jude’s in Memphis, Tennessee. They emailed the doctor there that is the best with Devree’s kind of cancer. So Shana just did the same thing for Devree. Oh darn! We got an automated email response that told us that doctor was out of the office until 2/2/2009. The message also left a phone number, so Shana is calling that number. We are all excited for Devree to talk with Chase. This little girl will be able to answer all of Devree’s questions. That will be a wonderful resource to help Devree through this process.

I read this to Devree and asked her what she thought. She said, “You forgot to mention that I want a roommate that I can talk with.” So far, all of her roommates have been babies with breathing problems. Devree says, “That was sad.”

Love,
Todd

***
1/16/09 2:15 pm

Wow things are moving fast now. Aunt Tammie told us about a girl named Chase in her ward that had the same kind of cancer as Devree. Chase is 12 now and was diagnosed March of 2007. She has returned to "Normal" life. She goes to school and is back doing all of the things she loves. Chase's parents did lots of research on line and found out that St. Judes is the best children's hospital and the one that has the most cancer patients that have fully recovered. Dr. Gajjar is the best oncologist for Medulloblastoma. He has the most experience with this type of cancer and the HIGHEST success rate. His treatment plan only takes six months compared to 9-12 months here at LPCH. The protocol for Dr. Gajjar's cancer study uses stem cells from the patient and St. Judes thinks this is why they have such a high success rate.

So I emailed Dr. Gajjar. His email said he is gone till 2/2/2009 but left a phone for his administrative assistant and Tabitha who is in admitting. I called his assistant and she gathered vital information and said Tabitha was in a meeting but she would tell her. Tabitha got out of her meeting and Dr. Gajjar had phoned her to tell her that he wanted her to call us. So Tabitha called us and said we have to get a physician referral and they want it before they do her spinal tap that this hospital has scheduled for Thursday. St. Judes wants to do the spinal tap. So we may not get Dr. Gajjar as Devree's personal doctor but he is the head of protocol and we will be working with him and his group. I called Dr. Edwards to see if we could get him to refer Devree but he is in surgery. Basically Memphis here we come!!!

This is a link to information about the brilliant Neuro-Oncologist at St. Judes:
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=e4cf10e88ce70110VgnVCM1000001e0215acRCRD&cpsextcurrchannel=1

This is a link about St. Jude Children's Research Hospital ranked No. 1 pediatric oncology hospital:
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=5f6105eb5d96e110VgnVCM1000001e0215acRCRD&vgnextchannel=002392d79e557110VgnVCM1000001e0215acRCRD

Love, Shana

***
1/16/2009 3:31 PM
I can’t begin to express how much comfort your comments have given us over these last few days. There are times when Shana and I have been emotionally drained, and felt comforted and lifted by your words and your service. We feel incredibly blessed to have such support.

When Shana told me that Devree was accepted by St. Jude Children’s Research Hospital and all we needed was a doctor’s referral. I just couldn’t believe it. Dr. Gajjar was vacationing in India, and just happened to see Shana’s email. He called from India to tell his admissions staff that he wanted to take Devree’s case. You would have to be in our shoes to be fully amazed at how quickly it all happened. This man is the Director of the whole Neuro-oncology program at St. Jude, and he is on his vacation. (A co-incidence?)

Dr. Edward’s is the Director of the whole Pediatric Neuro-surgery program at Stanford Medical Center. He only visits Reno once a month. Devree amazingly found out about her tumor on that day, what are the chances on that one? Then she made it through the next hurdle of actually getting an unscheduled appointment with that man. (A co-incidence?)

There are so many kind, caring people reading this blog and supporting us with your words and your prayers. Devree is on Mormon, and Lutheran prayer rolls. She is also being prayed for by all of you. Our family does believe in miracles. We are truly living one. Emotionally and spiritually we are not alone, we are being carried through this trial. Thank you so very much!!!

Love,
Todd
***

1/16/2009 6:15 PM
This evening at 5:30 PM Dr. Edwards came by with his team. They checked on Devree and asked if we had questions. Then we told them about St. Jude Children’s Research Hospital. Dr. Edwards was familiar with Dr. Gajjar and the hospital. He told us that it was an excellent hospital.

The faces of his staff reflected the look of being fired. We felt bad about that because we are so very grateful for Dr. Edwards and his team. They truly worked a miracle for us and we are so thankful. Shana and I deeply feel that St. Jude is the right decision for Devree.

Love,
Todd
***
1/16/2009 9:53 PM
WooHoo!!! Somehow Devree did it. We will be released on Saturday. When we are checking out, we will give you all an update. It amazes me how Devree can say, “I want theses tubes off.” or “I want to get out of here.” She isn’t forceful, but it just seems to come together.

We really go the run-around about how to get released. The Oncologist asked what the doctors were saying, so she wasn’t the one. The nurses were waiting to hear from the doctors. The Physical Therapist asked us what our Neurologist was saying. Finally, we got to talk to our Neurologist at the end of the day. He told us that it depended on the Physical Therapist. By this time the Physical Therapist was out of the office until Tuesday because of Martin Luther King day. At this point Devree just quietly said, “I just want to go home.”

Would you believe Devree’s Nurse started to make calls? She found all of the right people and we will be released tomorrow morning sometime. We are all so very ready to go home. Devree wants to go home most of all.

Talk to you all soon!
Todd

Thursday, January 15, 2009

Devree Quotes


Devree feeling better with Mom, Grandma, and Aunt Tammie in the background.


1/15/2009 7:06 PM
Devree fell this morning. Then she tried to go too long without pain medication because she wanted to be alert. She wanted to visit with Grandma and Aunt Tammie. Their visit really helped Devree to become her happy self again.

I asked her if she wanted to write something. She said she wasn’t up to it. So I asked her if she had any quotes to share. So here they are.

“Wires stink. Try your best not to get sick.”


“My room has all of my posters on it. So it’s like my room at home. All of my doctors comment on it.”



Devree's Mormon Ad Posters

More Devree Quotes:
“I love all of my stuff!!! I like stuff that makes me happy.”
“Falling this morning wasn’t very cool. I’m ok now, but when I don’t have my pain medication, my head hurts and I get kind of dizzy.”
“The deal is… If I lose my hair, I get an Alice wig. Aunt Tammie says I need a red head wig, because red heads have more fun.”
“My mom keeps asking me to eat, I don’t like that.”
“Walking is fine, but I don’t like being forced to do it.” (Mom & Dad keep trying to talk her into it.)
“I might get to ride in a cool wheelchair.”
“I got cool Barney pajama pants.”


This Next Section is: DEVREE'S BROTHERS RUNNING AMOK AT HOME

Groucho Shay


We Call This One "Boys Running Amok"

****
1/15/09 7:31pm
Two baseball players from the Stanford Baseball team came and visited the patients in our wing. They were both quite handsome and asked Devree what sport was she good at. She replied that none of them really. Then they asked "Well what sport do you like?" She said "Probably soccer because I have played that one." Then they asked if she wanted a hat. She said "Yes" and then they asked if she would like them to sign it and she said "Yes" again. Then they asked her what kind of music she liked. She said "The Jonas Brothers" Then one of them said "I know them. I have a little sister." Then Grandma asked "Are you Singers?" And the baseball players said "Yea we're single" because he had misunderstood. The player said "We've been asked that before." We laughed because he had misunderstood and thought Grandma was trying to pick up on him. It was a funny incident. It still puts a smile on our faces.
Love, Shana

Walking Day


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.

Love,
Todd
***
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.

Love,
Todd
***
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.

Love,
Todd
***
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.

Love, Shana

Wednesday, January 14, 2009

Getting Out of PICU


Devree Is So Loved!!!

Our game plan for today is to get Devree out of PICU. The intensive care unit is pretty noisy with people coming and going. There are also quite a few clicks and beeps that happen repeatedly.

Devree told us that she was sleepy, but it was too noisy to get any rest. However, we are creative people and discovered that you can go to sleep just fine in PICU if you have your IPOD in your ears.

The other big thing ahead of us is telling Devree the news. She had a lot of sleepy and groggy feelings leftover from the anesthesia. It just made sense to hold off until today. Devree’s goals for yesterday were to get the tubes and equipment off of her so that she could sleep properly. She did a great job. She was swallowing and eating before the doctors expected.

Part of our little Devree’s objective was to get those dogone leg balloons off. They fill with air every so often to massage her legs. This keeps blood clots from forming. One of the side effects is that they are sticky against your skin, and they inflate and deflate just as you are falling asleep. Little Miss Devree definitely has an opinion about them. She got them off by showing the nurse that she could move her legs all by herself (You show them Devree!!!).

Goal number two for today is to actually talk to Devree about what is going on. We don’t know exactly how she will feel, but when Shana and I think how it was for us, we just pray that we can know the right things to say. She is a tough cookie though. Keep praying for her.

That was Todd. He tends to get wordy and a little business like. We are doing quite well. Oh Happy Day that Devree spoke and can move and is amazing the doctors. She wants to do everything right now and is anxious as she says "I don't like being sick!" I feel better because now all of those Residents, and other stuff can see that Devree is not just a piece of meat. She is a wonderful girl who has her opinions and makes them known. It has been a wonderful staff but there were times when Todd didn't see that Devree was being treated not appropriately. As a mother I kept my tongue (AMAZING SINCE I AM SHANA AND I DON"T HOLD MY TONGUE VERY WELL!)and just kept talking to Devree and holding her hand, or rubbing her legs, kissing her forehead and let the staff know how amazing Devree is. I told them how she plays the flute and piano, and reads and buys her own books, and keeps writing her books. Of course she loves "Twilight" and loves the character Alice and that caught a lot of peoples attention because they have read Twilight too.

I think that Devree will handle the news well. Probably much better than her parents that were once again devastated. I feel like Miss Piggy on "Muppets in Space". Miss Piggy is trying to do her famous Karate chop and this other guy is beating her up. She first starts out confidently saying "Is that all you got?" Then she gets beat up some more. And she less confidently says "Is that all you got?" Then she gets beat up some more and slurringly asks "Iiiisssss thaaaaaa allll yoouuu gooooooooot?" We are waiting for the final words of her cancer and treatment plan. But we are confident that Devree will pull through.
Love, Shana

Love,
The Hamblin’s
***
I stepped out of the room so Devree could get up and have a bathroom break. While I was gone, Devers asked Shana what the doctors said about her tumor. Shana said that her response was, “So, that means I have to stay here longer?" (in the hospital not PICU). Her mom said, “Probably so”, and Devree said, “Ok”.

Getting up is a really exhausting thing for her to do right now. So Devree is sleeping. We welcome sleep for her. The rest helps her to recover, and is the most pleasant way to spend your time in PICU.

Love,
Todd
***
So this is Shana. I had to have a few tears reading all of your messages. Wow we feel loved and prayed over and cared about. No she wasn't on the Rexburg temple roll yet. I feel that all of your prayers have helped sustain Todd and I.

As Devree asked about her tumor, I told her softly and matter-of-factly that the doctors weren't able to get it all because it was wrapped around some vital nerves she needs. There was some more little tumors that they could see under the microscope but were unable to get them because they were far away from the surgery site. The tumor is cancerous. She digests this and she asks "Does this mean I have to stay in the hospital longer?" I told her "Probably". She says "Well maybe I will get that pixie haircut after all". And then she was feeling some pain in her surgery spot. She didn't have any pain medication all night. So I told her how important it was to ask for pain medication before it gets too bad because she needs to rest so her body can recover. She was so worried about talking to us and not listening to her ipod because she told us "That is just RUDE". I told her to go ahead and sleep because that is how her body and brain will recover. She is having a more restful day. We are still waiting for a bed to open up to move her upstairs.
Love, Shana
***
1/14/2009 3:30 PM
We are up in the regular ward. Devree is at the end of a hall and shares her room with one little baby about 4 months old that has breathing problems. Devree has been sleeping and sleeping because her body is so wore out. She sleeps on her good ear so she doesn’t hear that much. One of the nurses said that anesthetized sleep is not that restful. So Devree is quite tired. She has been able to sleep a whole lot better up here on the third floor compared to the PICU.

Todd and I went for the Wednesday lunch concert held over in the Stanford Hospital. There was an accordion player that also sang with 2 violinists and one bass violin player that picked it and also played it with a bow. I told Todd that was the most romantic lunch he ever took me to. I felt like I was at a European café with old time lovely music.

The oncologist just came in to speak with us. They still don’t have news. But we talked about different scenarios. It sounds like the oncologist’s want to do a spinal tap and then they said 2-4 weeks to start treatment to let Devree heal a little better. So it sounds like radiation will probably be a big part of therapy. Which means we will come here as an outpatient everyday for 6 weeks straight. They might do chemo-therapy at the same time or they might start it after. They will put a place like a station next to her heart to take blood and to give her the chemotherapy. But at this time we don’t know.
Love, Shana
***
1/14/2009 3:49 PM
I never knew you could be so happy watching someone sleep.

Devree has mentioned several times that her right side of her face tingles. Our neurosurgeon’s assistant came in to visit, and we shared that information with her. Her face lit up in response. We had to ask, “So it’s a good thing then?” She said, “Yes. This is indication that Devree’s nerves are beginning to heal in her face.”

Now we just need to get past this cancer thing.

Love,
Todd
***

1/14/2009 4:35 PM
Dr. Edwards just came by for a visit. The report that the right side of Devree’s face was tingling is of interest to him. He told us that it was a good sign, and then took off the bandage over the stitches.

We were told that Devree could take a shower and wash her hair tomorrow. If the recovery keeps going this well, we could be released to go home on Friday. There will be at least two weeks of recovery time before we can take any steps toward treating the cancer.

Love,
Todd

Tuesday, January 13, 2009

Devree’s Day to Wake-up


Devree resting after being up for awhile.


Devree asleep after surgery


Today Devree will hear about everything we shared with you yesterday. The doctor wanted her to have time to fully recover from her surgery, so they have kept her anesthetized overnight.

She has been sleeping peacefully in PICU (Pediatric Intensive Care Unit). She will continue to be asleep while a full MRI is done of her entire brain. They want to closely look for any other nodules.

When they are done taking the MRI, they will let Devree wake-up. Shana and I felt numb when we heard the news from the doctor. We expect that Devree will feel the same way. Please pray that Shana and I will be able to help her through that difficult time.

We want Devree to know that her Heavenly Father still loves her, and cares about her. The Lord has blessed us this far. Devree has genius doctors that brought her through a delicate brain surgery safely. Please continue in your faith and prayers for Devree. It is within our Heavenly Father’s ability to heal her. This is where we want to focus our faith.

We love you all!!!
The Hamblin’s
***
Yesterday Shana and I were up by 4:30 AM. Sitting in the surgery waiting room is emotionally draining. So when Devree's doctor came in with her news... the picture of uncomprehending blinks, is a good description of how we felt.

There was no energy left for any feelings. So we just found a quiet corner. Just to let it all sink in.

After some rest, we have better spirits. Now we are excited to talk with Devree, and we know that will happen sometime today. Its so hard to see our little girl hooked up to so many tubes and such. All we can do is hold her hand, we want to talk to her.

Karen, our RN, told us that we can put Devree’s IPOD in her ears. So now, Devree is styling with her IPOD, listening to “The Jonas Brothers”.

Our other neurosurgeon came by and he said that they would fit Devree in for another MRI sometime before noon today. They want to see how things are going after the surgery, and then they will let Devree wake-up. He said that she will wake fairly quickly after they stop giving her the anesthesia.

He said that when Devree comes to, she will want to take out her breathing tube. She will have to keep it in for a while longer though. They want to run her through tests to see how she is doing. The most important test is to have Devree swallow. Then she can take out the breathing tubes.

The RN assigned to Devree in PICU told us that there are no available times for an MRI, but that can be changed by the neurosurgeons (They have their ways).

We just found out that Devree’s MRI is tentatively scheduled for 11:00 AM this morning. I was jokingly told by our RN that “tentatively” means it will happen sometime between 11:00 AM and 2:00 PM.

An intern passing through said that he would be back by with Dr. Edwards later on. We will let you know what he says.

Love,
Todd
***
Hi Everyone,

Devree finally woke-up!!! Shana and I are so excited! We have been waiting all day long for this. The big worry is that Devree would be able to swallow. She can swallow. She can also breath on her own and recognize us. She was really groggy, but able to squeeze our fingers, wiggle her toes.

She is coherent and talking to us, but she is talking very softly and sometimes it is hard to hear her voice. When she had a chance to look around and take it all in, her first questions were:
1. Where am I?
2. What day is it?

Her first comment about how she feels was, “All these tubes and wires are lame”. I think we can all understand how she feels. She also doesn’t like these balloon things on her legs that squeeze every so often to make sure she doesn’t get blood clots in her legs.

The physical therapist just showed up and she is having Devree suck on an ice cube. Now she is swallowing, we so happy she is swallowing. She will need to stay in PICU for one more night and then she will be moved to a regular hospital bed.

We are so glad that we don’t have to deal with “Other News”, like Devree not being able to swallow or speak. But she can swallow, and she can speak. I know I’m repeating myself, but we’re pretty happy.

I’m going to visit with Devree a little!

Love,
Todd
***

Monday, January 12, 2009

Surgery Day


Hi Everyone,

Today we got up at 4:45 AM and got ready. We got here by 6:00 AM. That was when we discovered that they just wanted to make sure we were not late. We waited for an hour and now it is 7:00 AM. They are checking Devree's temperature, and making sure she didn't eat anything after midnight, last night.

They are asking questions about any alergies Devree might have.

Devree will be having another MRI done. They want to have one last look at the tumor and make sure her MRI position dots are all in the right place. This will help with the surgery navigation system that shows the doctor exactly where the tumor is. That shows the doctor more precisely where to cut.

Devrs is getting changed into her hospital pajama pants now. She also gets to wear some cute little hospital socks too.

Now a lot of people are showing up and asking questions about MRI dots (Skin markers or fiducial dots).

We will edit this surgery day blog, and update it as we find out more information.


Todd
***
1/12/2009 7:35 AM
I’m glad they are taking another MRI scan and placing more of the MRI marker dots for the GPS system in the operating room.

They wheeled us into surgery prep room and put Devree on a gurney with a nice blanket. A nurse gave her some litocain to numb her skin before putting in the IV. Now the IV is in.

Devree’s anesthesiologist Nicholette Kasman is now going through the medical history again. Nicholette will monitor Devree throughout the surgery.


1/12/2009 7:54 AM
Let’s see… we were up at 4:45 AM and at the hospital by 6:00 AM. We took care of the paperwork to admit Devree to the surgery center (Waiting room 1). They talked about Devree’s MRI dots and decided she needed a new MRI (Examining room 2). Then we went to a big open room for pre-op and post-op and got Devree’s IV and met her anesthesiologist (Room number 3). The GPS system for the operating room is a nice feature, and it isn’t much good if the MRI markers are not in the right places (MRI waiting room 4).


1/12/2009 8:29 AM
Right now we are in the waiting room for surgery (Waiting room 5). They told us that it would take them about an hour before they start Devree’s surgery.

Todd
***
We had some of you ask about sending get well cards, balloons, etc.. You can contact the hospital gift shop at 1(650)497-8596. Another way is to send to the address of the Lucile Packard Children's Hospital. http://www.lpch.org/aboutus/ContactUs/

The hospital will only allow mylar balloons because of latex allergies in some patients.

Todd
***
1/12/2009 1:03 PM
It has taken awhile to get started with the surgery. We are in the waiting room for surgery, and there is a 60 inch screen on the wall with surgery numbers on it. Our number has been showing that Devree is prepared for surgery. There was supposed to be a visit by our anesthesiologist when they got started. We never got a visit, but our surgery identification number showed that the surgery was starting.

We waited for another 30 minutes and then went to the cafeteria to get some lunch (awake since 4:30 AM). Devree’s anesthesiologist found us there and apologized that she had not come to see us sooner. There are actually to anesthesiologists assigned to Devree’s team. She told us that Devree was cute as she fell asleep. She told them that she couldn’t feel the anesthesia at all, and then her eyes closed.

Everything is going well. The report is that they didn’t scrub down and get ready for surgery until 10:30 AM. Dr. Edwards has another brilliant doctor from Switzerland working with him today. This other doctor works with Dr. Edwards occasionally on difficult cases. I think he perhaps wanted to get some of the press coverage that comes along with the story about this new medical facility. Whatever the reason, it is wonderful to have 2 brilliant doctors working on our precious Devree.

We don’t expect to have any further information until after 2:00 PM our time.

Todd
***
This is a waiting nightmare! We got up at 4:30 so we could be here at 6 am. They didn't even call her till almost 8 am and then they decided to have her do another MRI because the Frankenstein dots fell off. So she had another MRI to place the Frankenstein dots (The GPS system). It is a new operating room with state-of-the art computer systems and she didn't even go into the operating room till after 10:30 am. Then every few minutes they have someone talk to us about the hospital, the services offered here, etc. They gave us a social worker, a financial advisor, someone to reserve a bed for one of us tonight because only one is allowed in ICU. Then the media have talked to us about the "famous tumor" and the nurse comes and tells us not to even ask about when she will be out till after 2PM!!!!! So I have been walking up and down stairs, and walking around the hospital. They gave us a pager so I can some back to the waiting room. Worst of all, PEOPLE ONLY WATCH SOAP OPERAS or stupid THE VIEW in the waiting rooms. I am sorry if I have offended anyone but....what a waste. Well all I've got is time so I try to do what Cyndi Cordell was so smart to tell me from her vast experience of waiting at the hospital. I read her great little short stories book because that is all my anxiety can handle. We will let everyone know when we know.

Love, Shana
***
Okay it is almost 2:30 and the nurse finally came in and said that Devree did fine (meaning anethesia is okay for Devree) and the procedure is done and now it will be 1 1/2 hours for the doctor to close and then he will come and talk to us. A few MAJOR questions we will ask. First "Were you able to get all of the tumor?" Second "Is the tumor cancerous?" The nurse said that a frozen peice of the tumor was taken and tested. This is just a preliminary test. The results conclusively will not be for 5 DAYS!!!

During our wait, we were interviewed for the local TV station to talk about Devree and about the new surgical facilities. Todd is e-mailing a picture of Devree now. They did film part of the surgery so Kolten will be happy.

Love, Shana
***
In this hospital they don’t use the words, “Bad News”. They say, “Good News and Other News”. Well, we have “Good News”, and we have “Other News”.

The surgery was successful. They were able to remove the tumor. However, the “Other News” is that there were pieces of the tumor that were connected to critical nerves that Devree needs. They also found another nodule, that was far enough away from the hole that they were operating through, that they could not remove it.

The tumor was cancerous and malignant, but we don’t know what kind of cancer it is at this time. We should know what kind of cancer it is within 48 hours. A board of Oncologists will meet on Friday to talk about Devree’s cancer. They will develop a treatment plan at that time.

We know that you all care deeply about us, but we are taking a little time to digest this news. So if you cannot reach us by phone, we hope you will understand.

Love,
Todd
***
Everyone,

Thank you so much for your support and prayers. We are grateful for the love and support in your words.

Love,
The Hamblin's

Sunday, January 11, 2009

Devree's Blog

Me in a hole in a purple wall at the Children's Museum

Mom & Me in front of an Elephant at the Children's Hospital

Me in Wonderland

Me as a Flower in Wonderland

Me & Daddy in front of the Hospital


*fanfare* DEVREE’S BLOG! *hip hip hooray!* Oh thank you, thank you! Really, I can’t thank you guys enough for all you do to support and look out for our family. It’s really great.
Sigh. I’m sick of doctors. I mean I adore the attention but I don’t like that it’s because I’m sick. I’m not looking forward to being tested. I’m not looking forward to having a bunch of strangers look after me but I am looking forward to the attention!
Daddy didn’t tell you about my super cool hat! Well, as soon as I get into the car with my MRI dots, Daddy goes off and says “They’re not so bad. They sorta look like Frankenstein!” I was all like “Well thanks a lot dad! That totally boosts my self esteem!” (Like I need a boost, pshhhh! ;D) So when we went to San Fran yesterday We went to all these fun shops like a Sock shop and an Ireland shop but then we came across Crazy Caps! So we were looking through the window before we went in and Saw a Jonas Brothers hat. EEEEEEH!!!!! I <3>=( Oh well. ^.^ So I went to Young Women’s and Sunday School and that was fun.
Ooh! Guess what! Noble called and said he had Good news, Bad news, and a name for Dad. Ready? Bad news: Dad was released from the 1st counselor position of the Bishopric. (pshhh, bad news? Puh-lease!) Good news: Dad could grow back his mustache! (though I’m not quite sure he will) Names: Bishop Heusser (Hoho! *wriggles eyebrows* *Big picture of Bishop Heusser as a superhero*), Bro. 1st Counselor Clark, and Bro. 2nd Counselor Fraser! Wow, wow, wow! Amazing!!!

This is Alcatraz...I hope you know that!

This is Devree(Me)'s Jonas Brothers hat!

So here I am…waiting until my surgery…>=( With my cool Jonas Brothers hat. ^.^ I’ll let you know when something good happens! Loves ya!

~Devree (Little Miss Alice)