Healing at Home

We have been at home for the last 4 days! It has been great to have the family all together under the same roof. It has also been a great healing process for everyone. Odette is doing great-has only puked twice, which is amazing! She smiles, laughs, plays, cuddles with the kids and yes even tried to eat something in her mouth! I know it was just licorice but she put it in there where nothing ever goes except her thumb, so I figured any progress was good! The only problem we had with the licorice is that while she tried to jam it in her mouth, it went up under her feeding tube, and yes you guessed it, pulled the tube out! This doesn't bother me as much as it use to and I just laughed and put it back in...yes, me being at home has made me feel much more human and better as well. Kendall watched all the kids so that for two nights for a couple of hours I was able to sort of scrapbook-now I really am in the mood to do something crafty, so much so that I packed a craft bag to take to the hospital! The big kids are all much happier when we are at home as well. We had a great time playing games, getting to have friday movie night (a tradition that the kids thought was lost), getting to do homework together in the same room, hugs and kisses and yes, eggs for breakfast!! All in all, a great week at home!

Tomorrow we will be returning to the hospital to start the re-induction phase of Odette's chemotherapy. It is about a three week long process which entails, all happening tomorrow, a spinal tap, bone marrow aspirate and eco-something(a detailed scan of her heart) as well as three different chemo drugs--YUCK!! My poor Odette doesn't even know it is coming...I guess this is a good thing because she still loves to smile and laugh at the doctors and nurses. Hopefully this means that Kindergarten shots won't be a huge ordeal!

Arrow of Light

Congratulations to Brandt! He has been successful in earning all of his Cub Scout awards in the past 3 years. I can hardly believe the time has gone by so quickly! I use to be his wolf leader and I thought that year would last forever! Thanks to a lot of hard work from many great scout leaders, grandparents and Brandt having the desire to work hard. He earned his Arrow of Light last night after completing his overnight camp out with Grandpa Schiess, where he enjoyed catching crawdads, but he didn't want to eat one. It was awesome that Ken and I could both be there to support him (Thanks Grandma!). I am so proud of Brandt and all that he works hard to accomplish. Good going Brandt!

Amazing

This week, Odette had me all sorts of nervous. She decided that she was going to get really sick with some high fevers. For a couple of days, we tried to help her by giving her tylenol (only at the hospital can she be given this), a couple of different antibiotics and keeping her a little cool by placing cool rags on her head. She actually didn't even mind them being there since I am trying to get her used to wearing hats. The towels helped a little bit, but her head warmed them up quickly. They never did figure out what was causing the fever, but it left and we are on our way home today. I thought for sure that we would be there another week, but mysteriously one morning she didn't have the fever and she kept all of her food down. She also decided that she wanted to try and eat some rice cereal and peaches (hasn't had solid foods for nearly 5 weeks) and roll around on the floor mat, play with toys and amazing, try and crawl! It was a night and day difference for her! Obviously prays of my own, family and friends are answered in mysterious ways. They might not be exactly what we ask for, but it is always what we need!

We will be going back to the hospital in five days to start her treatment all over with a spinal tap, heart ultrasound, bone marrow aspirate and 10 days of chemo. Probably another three weeks stay in the white room of the hospital. I'm not looking forward to it, but I can't wait for our family to have dinner together for almost a week starting tonight!

Visitor

This week we had an unexpected visitor. My sister Katie decided she needed to get out of the hot Arizona sun and come visit! It was great fun having her play with my kids at home and then coming and entertaining me at the hospital. She decorated the very boring walls with paint artwork and colored on the windows with markers. All of ICS loved the purple elephant on the front window. It was great to spend time with my sister and feel loved by her. Katie enjoyed holding and loving Odette. I think Odette liked it also. You wonder why? Because Katie got puked on--to Odette that is a term of endearment!! She also enjoyed playing football on the X-box since the paddle would rumble. I guess I better learn how to play so that I have a new way to entertain for the long hall!

Shoot for the stars

In my front room, I have a sign that reads "Shoot for the Stars". When I was in high school, at some assembly, I remember the person talking saying, "It is better to aim for the stars and miss, than to aim for manure and hit." This has stuck with me ever since. Right now it has a lot of meaning to me.

Many people ask how Odette is doing and I let them know the basics, but right now I feel I need to "unload". Odette definately has her moments, but lately this is how she is...She is on morphine because the pain of her mouth sores is so bad that she can't relax. She doesn't try and even suck her thumb let alone eat and if a doctor comes anywhere near her mouth she hits at them. It only took one time of her being poked and bleeding lots to learn to shew them away. She is getting the simplest of formulas put in through her feeding tube, but even then, her stomach has sores and she hardly keeps any of it down. She is on 5 different anti-puke drugs and even with them it is rare that she pukes less than 2 times a day. She has been having fevers, which to me use to be no big deal, but knowing that infections cause fevers and that is the number one killer of cancer patients, I freak out! Currently she is on antibiotics, but the doctors can't figure out the source of fevering yet. She sleeps often with cold packs under her blanket and a cool towel on her head in her carseat to help (hopefully) keep more food down. She is absolutely miserable and I look at her and it is like her happy, joyful self is lost in a terrible awful place. She is definately not ok. Yes, leukemia can be cured, but it is not a simple easy road to walk for the patient or the family.

This is why I am thinking about my thought on the wall. My baby girl is going through hell right now and so is her family. She didn't ask for this at all and I wouldn't never even wish it on my worst enemy. She hasn't even had her chance to aim for any stars yet! However, I know that I am going to try along with my family to continue to aim for better stars such as the Celestial kingdom because I know I don't want to ever be where I am currently at for all eternity! Hopefully you are all aready doing the same!

Quiet moments

Lately, Odette has been in the hospital quite a bit. It seems like there is no end in sight-to which the doctors say there is. The doctor gave us what they call a road map for what Odette is going to have to endure. It isn't the entire thing, but goes up until week 46, which puts us into June of next year. In his words he says, "she is little, she gets sick easy, don't plan on going home. I know it is hell, but it will end." Talk about a huge frustration in life. I am not just mom to a little girl, but three other children! How on earth to balance all my duties is getting to be quite the juggling act! I am very greatful to all of you who have been mom to my children over the past six weeks-yes, it has only been that long! I honestly don't know what I am going to do to make it another 40 weeks! (There have been many tears and fighting in my mind over what to do!)

While I have been thinking about this, I had a chance to come home for a day to play with the kids and get them off to school. My sister and I took them to the pool and it hit me that I am still their mom and that I can connect with them in quick, special moments. At the pool, each of my kids wanted me to play in a different part of the pool with them alone, which at first I was bothered by because I really don't like swimming, and I would much rather watch from the side, but, I was overwhelmed by the spirit that I needed to do as they wished. With the few minutes I spent with each child individually, Brandt walking around the lazy river, Kathleen dancing around in the lap pool and Josselyn under the mushroom shower, I was able to connect with my kids and I knew they felt loved from me and that they were going to be okay. It was unbelievable to me that taking the few minutes to do this, I felt like I was a good, loving mother once again.

Now I am back at the hospital for a while, and I have thought of other ways to still be a good mother. Maybe some of my cooking, cleaning and homework duties are falling to a few of you other great mothers, but I am still doing what I can now and I know that it is good enough for them and me. So, make sure that you are taking advantage of the quiet moments alone with your children that are sometimes overlooked or watched by the side of a pool! You never know what special thing could come from that moment.

Back to School!

Today is the kids very first day back at school. Ken was nice enough to stay the night with our very sick little Odette so that I could be at home to fix breakfast, do hair and encourage and excite the kids for school. They are both pretty nervous since they are attending the new school-Sage Hills- and they have never been in the building before. It isn't quite done yet, but done enough for classes to begin. I am sure that they will do great and have a wonderful school year!
Josselyns favorite thing about going back to schoool means she gets to walk down to the bus stop and play at the park with her friends until the bus comes. It was difficult to get her to leave this morning!

Brandt and Kathleen didn't even look back when they got on the bus! They must have been really excited or embarrassed that their mother was taking pictures and waving goodbye!

On the way to the bus stop...the kids got new backpacks this year and they were both really excited about them, but this morning they said they were heavy and big! Hopefully they can get some muscles and carry them for the next 180 days!! I love my kids and am so thankful for them. Good luck at school this year my big 5th and 3rd graders!

High Counts

While at the hospital, Odette has to stay in her room unless her blood counts are high enough. If they are high enough, she is allowed to go out in the hallway just on the oncology floor. She can do this without a mask. If we want to take her anywhere else in the hospital, or she needs to go for an x-ray, she needs to wear a mask. We don't leave the room very often because her counts are never high enough, or we are to worried that she is going to catch some awful bug wandering the halls of the hospital--that is where the sick people go right?
Here Odette went down to the surgery floor so that she could see the walls that are painted like you are under the sea. The white walls of the oncology floor were getting a little boring. We were only looking at the fish for a whopping 5 minutes before we went back to our "safe" zone!

While at the hospital, animals get to come in as some therapy. Odette loves the dogs that come. This one's name is Rusty. She sat on him, pulled his ears and hair, patted it and squealed at him. It was great to see her so very happy! I am glad that she likes dogs since we have a big one at home!

We found a car for Odette to drive around the hospital room and hallway. She thought it was great to leave the room and see what was outside of her window! She has the perfect parade wave down and knows how to hang on to the steering wheel! Since we are going to be at the hospital for a while again, it has been nice to be able to play with Odette outside of the room and not feel so confined.

Odette is doing okay. She is puking frequently still, but has somehow managed to gain 2 pounds since we first went to the hospital. I should be amazed by this, but I know that they are trying to pump at least 800 calories down her a day in just formula! She does like mint chocolate chip ice cream, enough to grab it right out of my hands! She has mouth sores, so eating real food rarely if ever happens. She has a hard time even getting comfort by sucking on her thumb because they hurt her so bad.

Even though she is in such great pain, she still is so happy and has such a wonderful presence about her. The nurses are all in love with her and say that she just melts their heart whenever they have her. It is great to know that she is so strong, patient, happy and lovable. I am sure that these attributes will help her to make it through this trial in her life.

REMEMBER

So, today was the first day that I have gone to church in a few months. I attended the Branch here at the hospital. It was wonderful to attend church and to feel the spirit so strongly. I haven't been to church for a long time where I felt my Saviors love so strongly...could it be that usually I am chasing a two year old around, trying to calm a 9 month old and keep two older kids from poking eachother or teasing the younger ones!?!

I was taught today to REMEMBER--

• the Savior brings peace to us, let him
• you have great blessings, count them
• your family is Eternal
• your Baptismal Covenants
• when you have had answers to prayers
• great memories/fun times with family

There are many things to remember and never forget. In remembering we are blessed with the peace we found in past experiences and we can draw strength from that peace once again. Or we can remember the joy we have felt in a situation and once again be happy. We just need to take the time to REMEMBER.

Code Blue

So I use to watch ER and when they would say Code Blue, I really thought that it was something just for the movie. (Yes, I really am that naive, just ask my husband!) Anyway, since being at the hospital and actually hearing them call "CODE BLUE" over the PA system and hearing the stampede of feet, I have decided that that is one of the absolute worst parts of being here at the hospital. Everytime I hear it, my heart stops and I cling to my little Odette praying that it will not ever be for her room.

I am so greatful for Odette's condition. I hear so many people talking, or they stop and ask me what is wrong with Odette and I tell them, to which they reply my daughter is three, has a brain tumor that is inoperable and they give her 1 year to live. To this I break down with tears and realize that my situation is so much "better" than many others here, to which I am very greatful! It also makes me think everytime I hear this "Am I doing what I need to do with and for my children?" "What if I was to get the news today that I had a few weeks to live or one of my kids only had a little while? Would they have the knowledge and love they need to endure to the end?" Kids need our love and attention. Am I so caught up in having a perfect house, sewing the cute matching dresses or trying to keep up with my scrapbooking that I am missing out on what I should do and what my kids really need? I have decided that they need someone to fingerpaint with them, swing on the swings with them and simply enjoy life with them and love them. Who really cares if the girls all have matching dresses. They care whether they were loved and played with--memories last forever!

This made me think, maybe I am experiencing "Code Blue" in other areas of my life. Am I done breathing in areas of scripture study, prayers and teaching my children what they need to know to live happy successful lives? I surely hope not after my current experiences I want my family to know that I love them and have a testimony that we are loved also by a Father in Heaven who longs for us to come back to him successful. We can do this if we but endure...

My next trip

After a 4 day weekend at home it was time to go back to the hospital. Odette was not a happy camper. (This picture I actually took at the hospital, but I figured that it depicted her mood of unhappiness!) Ken took her this time alone so that I could have an emotional and hopefully a physical break away for a couple of days. All parties at home are emotionally exhausted and we are all basically running on empty. Hopefully the fumes can keep us going for a while! She has been having a hard time since the last round of chemo that gave her awful sores in her mouth to her stomach and into her intestines. She hasn't eaten "real" food for 3 weeks now, except to lick a Popsicle-who can resist those?! Even her formula is rough on her and she pukes at least once a day. However, before she left the hospital last time, and since she has been at home with her "sibling medicine", she has been happy despite the sick feelings. She loves to watch the other kids, roll around on the floor to try and be right next to them, and when they are gone, her disposition completely changes. I was so excited when we got her to smile and laugh so big. Deep down below the hurt and illness, our very happy, patient, pleasant little girl still exists. It just takes a lot of work to get her out.

Odette will probably be in the hospital for about 8 days unless her counts don't come up and then they will just start the next round of chemo and keep her there. I personally hope they come up really high so that maybe we can take a pit stop at the zoo with her on the way home and show her the orangutans that I think she has previously looked like with her red hair...now pretty much nonexistent. I guess if we don't make it this time, it isn't like we won't be going up town again soon and who knows, maybe it will be cooler!

Summer fun!

So, we were all suppose to go to Thanksgiving point today to see the Dinosaurs. It ended up that when we got there the line went half way around the building! No one was in the mood to wait in that line just to see a few old bones and have the kids splash in the water and sand, so when Aunt Suzanne said we could come play at their house, the kids were all for it! They had a great time swimming, splashing, spraying and of course throwing waterballoons at anyone that they dared!

Everyone being brave to get close enough to the water to get splashed.

Kathleen gets tired of water quickly, but she had a great time with Courtney and Brennan.

Brandt thought he might be brave enough to throw a water balloon at his mom, but lucky for him he thought about it twice and decided that someone else might be a better choice!

Josselyn threw the balloons at anyone and anything and loved it when she got wet by one. She is a busy child, but the most fun and carefree of any of them! She also made sure that she got plenty of sunscreen on her head so that it didn't get burned!!

I'm so thankful that I have such an awesome husband that is willing on his days off to spend them at the hospital to take care of Odette. He is great and I am so thankful that he is so selfless. I couldn't do what I need to do without his help and great sacrifices! I love you Ken!!

Dealing with Stress

Everyone has a different way of dealing with stress and frustration. Some yell, cry, fight, act out, make messes, but Josselyn decided her way of dealing with the stress of our current situation was to pull her hair out. On one side, she was almost completely bald. We decided, with her input, that she wanted to look like Odette. Ken took the clippers and gave her a haircut. She was so excited, but when she saw the pile of hair she told Ken to please put it back on her head. That didn't last long though, as soon as she was asked to pose for the camera she was in love with her haircut. This morning she woke up and came and told me that she was "a beautiful princess" just like Odette. I am so glad that she has such a good sense of who she is and what it means to be beautiful. That is something more difficult to come by than hair!

When the wind blows

You know the saying "When it rains, it pours"? Well, when the wind blows hard enough, it breaks your tree! Our tree that we were so proud of and that was finally large enough to offer shade in the summer to something bigger than an ant, did not survive the windstorm a couple of nights ago. It was a very sad, frustrating sight to come home to! Thanks to the guys who quickly came over and made firewood out of it. I guess looking on the bright side, once the stump is dug up, I think I might have room for the other two fruit trees that I have been begging Kendall to let me get...there is no way that one peach tree is enough for this family!

Family Fun

Lately it seems that I all do is worry about taking care of Odette and thinking what a bad mother I am to my other three children since I am not always around to make them breakfast, watch at swim meets, do crafts with and kiss goodnight. Thankfully today, Grandma and Grandpa came over to take the kids to the primary carnival. Grandma volunteered to stay at home with Odette so that I could go. It was great to be a mom again and enjoy the other kids, even if it was just over to the church for some cotton candy and games. It was great! I love being a mother of such wonderful, fun children!

Brandt loves his balloon hat from the carnival. He has to walk sideways to get through any doors!

Kathleen loved the princess crown she won from one of the games and her mouth full of cotton candy!

Josselyn now has her very own wand...maybe with a little luck she can make her stomach stop hurting after she inhaled 5 packages of smarties, a cupcake, cotton candy and popcorn!

Chemotherapy

A lot of people have asked what Odette's treatments are like, if she needs an IV each time she gives blood and what is chemotherapy anyway. Well, here is my very best explanation how I understand it...any of you technical doctor types can correct me later.

Two days after Odette was diagnost with leukemia-cancer of the blood, they put in her chest what is called a central line. It is a permanant IV tube that goes directly into her heart. Through this line, they are able to make blood draws without having to poke her each time they need blood, which is every day at least once while in the hospital, and about once a week when we are home. Through this tube is also where they put any medicines that they want to work quickly since it goes right through her veins and doesn't have to digest in her stomach. Here is also where they put fluids to keep her hydrated and the chemo drugs-that hopefully kill off the cancer cells.

For chemotherapy there are many chemicals/drugs that are used. I can barely say them, so there is no way that I will be able to spell them! Some are put in through this central line for short periods of time, and some run in over long periods of time, up to 24 hours like the one that she just got. Other chemotherapy comes in the form of shots into her thighs or they will put her out and she will get a back poke/spinal tap where they shoot the chemo drugs directly into her spinal fluids. Once they have administered the chemo, they will then send in a "rescue drug". (Not all chemo drugs have a rescue drug.) These drugs, (include steroids and bone marrow transplants and others) are meant to help rescue the body from the negative effects of the chemo. So, they are to help neutralize the chemo drug or fight adverse affects, such as protect the kidneys and liver or help to make the stomach stronger so ulcers are avoided or lessened, or to help jump start your bone marrow into producing the good kind of white blood cells. (This is what we want since ALL is cancer of the blood and is seen in the white blood cells having a mutation and growing at a way to fast of a rate.) Obviously there are still side effects that aren't "fixed". Odette will not have any hair after the next week or so since the next chemo drug affects the hair. She also is very sick to her stomach because she has sores there, so she doesn't want to eat and pukes frequently. (This is why we have the feeding tube.) She will also have fevers, not just because she is sick, but as a reaction to a drug or even the cancer. A lot of the drugs can cause irritability, which is rough because normally she is a happy, calm baby. Hopefully next week, she will be getting the steroids and this makes her hungry, then maybe she will start to eat some baby food or anything again!

So, that is basically chemotherapy in a nutshell. I am glad she doesn't have to get poked often and even though it is gross looking and a pain to keep clean and limits her time in the bath tub, I know the central line is helping her to get the treatment that she needs. If anyone has other questions feel free to ask and I will see what kind of answer I can come up with!

Worries

When we first went to the hospital, I know I was really worried about Odette being sick, but I had two other things that were really bothering me. 1-My strawberries need to be weeded. The family had just planted 32 new plants so that hopefully we would have enough for us all to eat and not just Josselyn! I didn't want them to be choked out and die! 2-We haven't had family pictures yet because Odette couldn't quite sit up and I had been waiting. Now I was really worried...what if I never got a family picture?

Thanks to some great neighbors, my strawberries got weeded, and are currently spreading like crazy! Also, a neighbor volunteered to come into our house to do our family pictures. They turned out awesome even though she was not able to use all her professional stuff. They turned out awesome even in our kitchen. The one of Ken and Odette is one that she took...I just love it. If anyone is looking for someone to take pictures, I highly recommend you go through Melanie. Her website is: studiompictures.blogspot.com

Thanks for all of you who have helped out with my silly worries!

Healthy and Happy

Odette is finally healthy and happy! Just in time to start her round of chemo tomorrow. Today she finally laughed, giggled, smiled, rolled over and tried to eat some real food! It is so sad to know that tomorrow it will all be different again. She is getting a chemo that runs over a 24 hour period of time. Last time she got this one, it took a week of puking and a week of slow feeds to get her happy again. I am not looking forward to this, however the sooner it happens that sooner we will be to the maintenance phase which means chemo isn't as often or as harsh...probably at least six months away. I know that time will pass quickly...it has already been 6 weeks of this two year journey...37 days in the hospital. I think we will definately have a baby worth a million dollars when this is all done!

Having Hope

When we first found out that Odette had leukemia, my heart stopped and I wondered why on earth this was happening to such a precious little girl. I didn't know what to think or do. I spent quite a few days just staring into space feeling lifeless. A few days later, I asked for a blessing for Odette because she was having fevers, crying awful and just looking terrible. I was "freaking out", I thought this was for sure the end. The blessing brought great peace to me to know that my Heavenly Father loves me and he would help me get through this trial. So far it has been almost 8 weeks and we are making out okay. Each day brings joy or a new frustration for us and we have to live a few minutes at a time to make it through. Today while reading the scriptures, I was touched when I read "If God had commanded me to do all things I could do them." Enduring our trials well is what we are suppose to do and I have renewed strength knowing that God will help me and my family make it through this rough time. I also read "And if it so be that the children of men keep the commandments of God he doth nourish them, and strengthen them, and provide means whereby they can accomplish the thing which he has commanded them." I know this to be true. How else would I still be able to be doing what I am without the extra strength given to me by Heavenly Father. There have been many sleepless nights and days of worry and concern for my entire family. I have frequently wondered if our family was going to fall apart through all of this, but I am reassured that there is a way provided for us to accomplish what we are suppose to do and he will strengthen us, nourish us and provide for us. I know my Heavenly Father loves each of us and we will make it through this time in our life, maybe with a little less hair, but tied closer together as a family and to each of you who so willingly share your time and talents with us. We love you all--Stephanie

What once was lost...is now found!

While spending a lot of time in the hospital, the weeds at home were continuing to grow. They are kind of like interest! They never slow down or take a break until you rip them out by the root! With the help of the neighbors and in our spare time we have finally managed to get the weeds in the garden. They are almost as tall as Ken! Today, however he has made it through part of the garden and to our amazement, he as found...tomatoes, green peppers as big as the ones you buy in the grocery store and-this is the best part-BASIL! I might still be able to make my homemade tomato soup in all of my spare time! I am so very excited. Maybe he will find some carrots, onions, zucchini and pumpkins. That might be pushing our luck, but you never know! So, if anyone wants to loose their kids, send them over to pull some weeds in the backyard!