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.