Faith

It has been said that if you have enough faith you can say to the mountain, "move" and it will be done.

I have also heard, "Sometimes all the faith in the world can still never change what isn't meant to be."

So, even if I have enough faith to move a mountain, if I am suppose to climb over it, then I better start climbing.

Odette poses

Those of you who know me really well know that I am a freak when it comes to pictures. I want a picture for every occasion and activity that the kids do alone or as a family. I promise my husband and myself that someday they will all be neatly labeled and put into a scrapbook...
Just by shear luck, on Odette's first birthday a photographer came to the hospital to take pictures of patients. She came into Odette's room for an hour and got some beautiful shots of Odette. You never would guess that these pictures were taken on a hospital bed an hour before Odette decided it was time to puke!
Odette loved the camera and smiled and talked most of the time. Fortunately for us, she also had one outfit left that wasn't barfed on and a matching hair bow in the diaper bag. (Yes her mom does attempt every now and again to dress her cute!) She left the bow on the entire time!
Even with her nose tube, she is the most beautiful, bald baby that I know! I am absolutely in love with this angel of mine!

Keeping with Traditions

One of the hardest things for me through Odette's illness has been having to "miss out" on what we might normally have been doing if she wasn't at the hospital sick. Even if it has been difficult, we have tried to stick to our regular traditions with the family. We have done most traditions, it is just hard to have part of the family missing each time. Only part of us get to participate.

For birthdays each year, we usually get the kids a helium balloon for each year they are old. (Yes, this is my tradition I started because growing up one of my friends said that is what their family did and I thought it was so cool. Besides, what kid doesn't like balloons?!) One balloon seemed dumb for Odette so we thought about getting 18 and saying one for every year we want you to have a birthday while living at our house. This didn't work because they wouldn't fit in the car, so we got three. Don't ask why we got three, but Odette is in love with the balloons.
Our next tradition is getting our teeth cleaned every six months. This time, Josselyn was old enough for her to have a turn. I was very worried that maybe she would freak out or spit at the hygienist, but we got lucky! She was the best patient ever after she got to check out all the tools. Her very favorite was the water sprayer and the vacuum. She passed with shining colors and has 20 teeth! Prospects where not so good for the other three of us!

Our final tradition that we did this week was make gingerbread houses. We usually make them after thanksgiving, but with the help of a great sister, and one donated gingerbread house so everyone could decorate their own, we did them on one of my nights at home. The only thing missing was the little candy canes that I had forgotten to buy and the rest of the family up at the hospital. The kids had great fun squirting frosting, decorating and of course eating way to much candy! But it wouldn't be the same without eating all the candy!

Now for seeing what our traditional Thanksgiving will end up being tomorrow being at the hospital. At least the hospital is making an exception and the kids will be able to come up tomorrow so it will be fun to have the family all together eating whatever the temperature the food ends up being after an hour drive up to Primary Children's.

Open your Eyes

At the beginning of the month many people said that they were going to try and come up with something different every day to be grateful for since it is the month of Thanksgiving. A few people also commented that this might be a difficult thing. I was very disturbed by this comment. Honestly there aren't at least 30 things to be grateful for? (I know for me 30 is easy since there are that many people in my family!) Obviously the song "Count your Many Blessings" needs to be sung a few times. Over the past five months, I have sung this song plenty and my eyes have been opened to many "hidden" things in my life. Not that they were ever hidden, I just had my eyes closed to the many great and wonderful things that are around me.

Each year for family home evening we have the kids write things or draw pictures of what they are grateful for and then we hang them on the front door so that we are reminded many times a day of the good things, which are easily overlooked when burdens, frustration and despair are so rampant in the world (and sometimes your own home). I wanted to share a few things that my kids are grateful for.

JOSSELYN: the moon, princess movies and crowns
KATHLEEN: outside, doctor, medicine, family, food, house and moonlight
BRANDT: mom, dad, sisters, dog, bed, house, food and mints

A while ago in a Relief Society lesson, it was about gratitude and we made a list of things. I reflect on this list frequently when life gets stinky and it has helped to make me see life as much better. I am also much happier when I reflect on all the things I am thankful for.

1. a husband who works incredibly hard for his family. Everything he does is trying to help me and the children be happy and comfortable.
2. a very smart husband that can fix almost anything.
3. four beautiful children that keep me smiling and jumping every day. That means I am getting my exercise!
4. a mother who taught me compassion, endurance and forgiveness.
5. a father that taught me hard work and independence.
6. a beautiful home that I get to take care of that has floors that can be mopped, doors that can be locked and toilets that can be flushedn (if the kids ever figure this one out!).
7. a dryer so that my clothes don't have to smell like the neighbors BBQ dinner.
8. visiting teachers that spiritually and emotionally support me.
9. temples that make my family forever.
   
10. a talent to love and understand others.
11. that I love service.
12. knowledge that I have a Heavenly Father who has a plan for me.
13. a Savior who sacrificed for me and knows all the pains I endure.
14. the ability to repent.
15. friends who check up on me daily and bring smiles to my face.
16. my health.
17. I can read.
18. my husband has a job with great insurance when we need it the most.
19. medical research that gives my daughter the best chances of fighting cancer.
20. a pull out bed at the hospital--can you imagine if I had to use a sleeping bag on the floor!
21. my talent of sewing so I can make modest clothes for my beautiful daughters.
22. live in the United States, even if I don't like the current boss.
23. running water so I don't need to go to a well or worry about kids falling into one! (I'm terrified of water when it comes to little people.)
24. public education so that I don't have to be an expert at everything...yet.
25. Grandmothers who teach me all that they know about gardening and canning, not to mention unlimited amounts of hugs.
26. a grocery store not far away so when my garden grows nothing but weeds we can still eat.
27. a years worth of pretty much everything...
28. chocolate to make my frustrations melt away.
29. text messaging so that we can talk to Ken's deaf brother easily. (and many others!)
30. a vacuum cleaner. How else would we take care of the carpet? (the dog might work I guess?!)
    

The list could continue on and on. What do you see in your life when you take time to open your eyes and look around? You might be surprised, so go ahead and try it!

Happy Birthday Odette!

Today was our first day back to the hospital. Since Sunday is Odette's birthday, we decided she needed to have a cake. An excellent neighbor made a 48 cupcake cake for Odette to share with all of her "family" at ICS. We thought that 48 cupcakes would last long enough for both shifts of nurses to have one, but it was gone within an hour! (I guess that means to celebrate finishing chemo we will need at least 150!!)
I attempted to have Odette try a cupcake, but she didn't want anything to do with it. Here she is sticking out her tongue to lick it, but after that she just cried when she looked at it. We will have to try again, maybe when she has to take steroids and then she will want to eat stuff (or at least play with her food!)
Even though she didn't want to eat her piece of cake, she had lots of fun going around sharing them with her doctors and nurses who are all in love with her and visa versa. What isn't there to love about a 16 pound, smiling, bald baby?!
While being at the hospital isn't our most favorite thing, it is nice to know that we have a great support group and people that love our little Odette.
I guess I shouldn't call her little anymore. She made it to the big 1! A few months ago it seemed she wouldn't make it here. Thanks to so many people we have all made it this far! Watch for more birthday stuff to come because you know me...a birthday isn't complete without balloons, presents and siblings!

Happy Days

Since we have been home and done with chemo for over a week, it seems that happy days have once again returned to our house for everyone. The puke has been at a minimum-still no days with none, but once a day is awesome-and the kids have fallen into their "old" routine with mom home in the morning to make breakfast and kiss them goodbye. An added bonus has been that Ken has had most of the week off as well, so I have been able to have some of the extra hands that I have needed to take care of the little girls, cook, clean and finish sewing one of the girls Christmas dresses! Terrific!! I love Ken!
It has also been great because Odette's counts-for the most part- have been up, so we took her outside to play and swing. She was all full of giggles and smiles and she didn't even puke when she went really high in the swing!
This week has been full of more smiles and laughter than the past five months combined. Odette thinks that Kathleen is extremely hilarious and will crack up just looking at her-it is the most precious, silly laugh. I can only hope that this next round of chemo isn't to horrific and that it will not take that long to have happy days return to our house again!

Odette's counts are: White Blood Cells-2.7, Hct-34.6
ANC-2.1 and platelets a whopping 270! (I guess once Odette decides to make platelets she really puts it in high gear-more than 6 times what she had on Sunday!) So, all of you smart readers...do we go to the hospital to start our chemo tomorrow? Are her counts high enough? Yes they are! Now, to pray that we can be at home for Thanksgiving since we have an awesome visitor coming to spend the week with us!

Counts

I refer a lot to Odette's counts and decided, after being asked a number of times what that meant, that I would attempt my best to explain. Remember that I am not a doctor and don't always use the most technical of terms! This probably will be as clear as mud, but here it goes.

Counts refer to Odette's blood and the components that make it up. There are lots of things in blood. There are four things that we keep good track of to determine if Odette is ready for her next round of chemo to begin or to make sure she is okay. The doctors watch a lot of other things, but for Ken and I there are the four things to keep track of.

The first one is White Blood Cells (WBC). The normal range for these is between5.5 and 17.0. This is the one that is affected by the leukemia. The body makes weird white blood cells that don't do their job and reproduce quickly and take over-leukemia. During chemo, the goal is to get rid of the fast reproducing cells. (This is why baldness happens since hair is a fast dividing cell.) Odette needs to have at least 1.5 on her white blood cells in order to start a round of chemo. Currently Odette is at 13.3. In the past 5 months it hasn't been above 4.7, however she has been on nupogen shots for the past week to stimulate her bone marrow to produce because she had 0 for about a week.

The next one is her Red Blood cells or Hematicrit(Hct) - I have no clue how to spell that one. This is just red blood cells that take oxygen around. The chemo will kill these off to, so we watch it since oxygen is a vital necessity! If it ever gets low, that is when we give Odette blood transfusions. (So please go and donate some blood today!) Red blood cells replace themselves about once a month. Normal is between 33 and 39. Currently Odette is at 35.6. She got blood just one week ago today.

The next thing they watch is Platelets. These are what allow your blood to clot and heal cuts and keep your body from bruising. When we first found out Odette had leukemia it was because she had bruises all over...super low platelet levels. Normal is anywhere between 150 and 400. Currently Odette is at 41. In order to start the next round of chemo she needs to have a minimum of 75. You might wonder why not just give her a transfusion, but this is only done when she gets around the 20 mark, besides, we want her body to try and make her own. She did do this over the weekend since she started at only 27 last thursday.

The final thing that we watch is ANC. This is your immune systems ability to fight disease. Normal range is 1.5 to 10. Odette is only allowed out of the hospital if it is at .5 or higher. This is why she gets sick easily. However, since having the nupogen shots, her level today is 10.2! (NO, this does not mean it is okay to come over and visit even if you are sick!) This is super high for her and will probably drop back down into the normal range since we aren't giving shots this week.

So, based on this information, Odette is not able to start her round of chemo today because, "she didn't make counts". Now you all should be pros and understand what that means--right? We will be waiting until Thursday to see what her blood looks like then and hopefully be able to start on Friday. Maybe with a little luck and some prayers she will be home for Thanksgiving!

Excitement

I'm so excited and I just can't hide it! For some reason I have been super excited to be home for the weekend...could it be that we only have one more major round of chemotherapy where we have to be admitted to the hospital and then we, I pray, get to do the rest of Odette's treatment as outpatient?! I thought the day would never come that we would be able to decipher what our new "normal" life would be like!

Sure, it is still a long road ahead for Odette, but at home with all the best medicine sisters and a brother can give it will be a much happier road! Odette still has a little over 32 weeks of treatment to endure. The chemo is suppose to be much "nicer" (if you can say those two words in the same sentence) and shouldn't affect her counts as much. This means, a more healthy, happy child that should learn to crawl, walk and eat! So we can get rid of the very ugly, yellow tube that has been taped to her face for the past 5 months! She is beautiful with it taped there, I can only imagine what she will look like without it! Sure there is going to be more work for us here at home with being a full time nurse, mom and housekeeper, (thank heavens Ken is so willing to help) but to be home is a dream I thought would never come true!

I know we will be back at the hospital every now and again for blood, platelets and to visit the awesome staff at ICS. Hopefully we won't be back for any fevers or other strange things. I am sure we will have quite the pharmacy of drugs here (like I don't already) that I will have to keep track of giving at all the right times, but I have so many things to be excited for...hopefully home for the holidays, a one year old birthday party that we were unsure of making it to 5 months ago and, the best of all, maybe the puke will end! What more could you want in life?!

Lessons Learned

So you know how it is always said, "We go through trials to learn lessons and become stronger." Sometimes going through the trial, you do like I have done and just try and keep your head above water. Who cares what you are learning, you just don't want to drown! Well, today as I was driving, I was thinking, which is rare (because then I can't concentrate on driving because of all the tears!) and I realized one of the reasons why I am going through the trial of having and caring for a very sick little girl.

Ken has always told me that I am way to nice. Many people have also told me that I need to learn to say "No". I have always loved pretty much everyone and always said yes in helping someone else, even if it seemed impossible to do or caused my day to be extremely chaotic. In going through my trial, I have had to swallow my pride and have so many people help me instead of the other way around. It has been difficult and often embarrasing to admit that I can't do this alone. HUMILITY

I have had the opportunity to be the compasionate service leader a few times and I loved it...I love to serve, care and feel for others. Now, I can care one step more because I have walked in places that not many get the chance to walk in and felt things that not just anyone can understand. I have a deeper understanding of the unconditional love that our Father in Heaven has for each of us, no matter what our circumstance. (Or how dumb we behave.)

While at the hospital, I have prayed that I could be of help to someone every day. Amazingly, I have been able to do this because all wounds aren't healed with a casserole. I have made friends and connected with people on a whole new level. I have never felt so much love and understanding for people that I hardly know. It is the most amazing and overwhelming feeling--indescribable. I know that the more you are willing to give, even if you don't think you have anything to give, you will be blessed 100 fold! It seems crazy to give someone $10 when you don't really have it to give, but then to get $1000 in return...what can I say? Obviously CHARITY NEVER FAILETH.

What would you do?

This week is an unexpected week. We were suppose to be able to have Odette at home with the family until friday when she was going to start her "last" chemo before our maintenance chemo began. I guess I should be use to change in plans since we can't really plan for more than five minutes in advance, but this week has me frustrated and overly emotional.

When I was told on Monday morning to bring Odette in just for a check-up my heart sank. When have we ever just had a check-up and been able to leave the building? Once at the doctors office, they drew labs and the nurse came back and said, "just so you know her counts (what make up her ability to fight diseases) are zero". I knew then that we had just bought ourselves an admittance to the hospital . It didn't help when they said, "and she needs blood". This means a fever is incoming. I didn't give up hope though and when it looked like she wasn't going to get a fever and we might escape I went and got her medicine from the pharmacy. When I got back guess what had happened--a fever! Goodbye $20 for the medicine that I now no longer needed and hello hard pull-out bed and cafeteria food-Yuck!

In the drama of the day I also missed getting my N1H1 shot, so Ken and I arranged for a day of driving and chaos so I could get my shot while he was at the hospital. So, I got my shot and grabbed the kids from school so I could race them to scouts and grandmas and get back to the hospital so Ken could get the kids home before to late. What a crazy whirlwind. My heart is so torn and I am starting to fall apart. Josselyn grabbed my leg and wouldn't let go and said "Don't leave my mom. I want you to be by me." Kathleen keeps hugging me and saying she loves me through tears and asking when I will be back and whispering "can't you stay with us mom?" Brandt of course is the tough guy and tries to just say by and walk away. It takes me almost a half hour to bring myself to leave. I want so much to be with the kids, but an eleven month old is miserable with gas pain, a bum rash that looks like something chewed on her butt (something did-5 kinds of antibiotics) and also crying for her mommy is waiting for me. What to do? Ken is an excellent dad/husband and has been doing great to balance all that is required of him. (Its no small task to work full time and then come home and be a mom full time and sometimes a nurse at the hospital--never time for a break.) The kids love for him to cook cuz he does the yummiest food, not just the quickest.

I know there really isn't much of a choice...you do what you have to do, whether it breaks your heart or not. You just tell yourself and the kids everything is going to be alright and soon we will be back together. You be strong for them, and then walk out the door and let the tears begin. What else can you do when your torn between places and all you want is to hold each of your children every day and sleep in the same room as the person you are married to...

M.O.O

MOO stands for Monday Orange for Odette! It was so great to hear and see how many people wore their orange shirts to show that they were in support of Odette. (Even if orange is not one of your favorite colors like it is mine!) I know that times are tough for pretty much everyone and this is a simple, inexpensive way to show Odette and her family that you care. Knowing that you are cared for can make all the difference in the world. I know that our family thinks that it is great-they thought it was awesome to see other kids at the bus stop with the same t-shirts on. It made them feel like someone else loves and understands their situation. (At least as you can hope to...I hope that no one can ever truly say they understand the situation!) Send us your pictures of your MOO day and thanks so much for showing us you care!!

Playing Doctor

Josselyn loves "her Odette". When Odette is at the hospital, Josselyn will call and ask just to talk to her, she doesn't ever really want to talk to the parent that is there with Odette. She will talk as long as you will let her hold the phone and Odette will smile and sometimes attempt to squawk back. It is very sweet.

The other day, when I snuck a potty break, I was ready to come back mortified at something Josselyn had done while I was away for thirty seconds. (Because this is always how it is...potty accidents, food all over, anything you don't think of she does!) Instead, I found quite the cute and pleasant sight. Josselyn was dressed up in all the doctor gear that we have, gloves, mask and the "listening thingy" and was taking good care of Odette who was laughing and helping her listen to her stomach.

It is obvious that Odette is greatly loved by her big sister. Odette loves her siblings also. She grows and does so much better when she is here at home under the care of the "little people doctors". I know they can always get her to be happy and what better medicine is there than a little extra love and TLC? I can't complain either because it is free services!

This is My Life

While driving home from the hospital this week, I did as I usually do...I cried. I should be so happy that I am coming home with a beautiful baby girl that has decided it is okay to laugh again. I am very happy, but also very overwhelmed and extremely tired. Music always has had a great amount of influence on me, for good or bad. It seems that every time I get in my van to go anywhere I hear a song that hits home and I am always crying. (You would think that I would learn to turn the music off and just travel in silence!) This time it was Garth Brooks-the one where it sings "I will sail my vessel til the river runs dry..." Why on earth did I start to cry! Maybe you can listen to it and tell me why.

Anyway, Odette is home until Friday the 13th of November. (Good thing we aren't superstitious.) We will then be taking her back for her last round of chemo and then we are on what the doctors call maintenance. (Something that four months ago seemed like we would never make it to.) This is still chemo, but a lot less intense and we will be able to do the chemo drugs at home and have our home nurse come and take blood draws a few times a week. Then we just pray we don't get a fever and have to go to the hospital for that. We are looking forward to this time where maybe life can become a little "normal". Of course it will have its difficulties-I hope I can keep up with all the housework and kids homework and Ken will be back to work for a more regular schedule.

Currently, we are just taking one step at a time...the only Christmas song that has come to my mind "take one step in front of the other and soon you'll be walking out the door..." (If you haven't watched the Kris Kringle show you won't know that one.) Sometimes I don't think that I can even take one more step. Odette is constantly puking again and you can't sit her down without lots of tears and of course that makes more puke. So, instead of getting anything done, more messes are just coming. I am so glad to have her with the other kids though because everyone is more happy, but I have to stop myself from thinking the "grass is greener" at someone else's house. So often I wish I wasn't me...can't I just have four screaming kids that are fighting and making a mess, that each have an immune system and for the most part sleep at night? Why do I live in fear of fevers, nose tubes being puked up and giving wrong medicine? (I think we have 9 different ones now.) I know that everyone has "issues" that would make their grass not so green, but right now I don't think I have any grass!

This is my life...full of craziness, tears (of joy and sorrow that don't just belong to me, but everyone in my family-children included) and puke. For some reason I/we need to have this life right now and someday's I understand and others I don't. Today it is because we have been married 13 years and I have been told that the 7th and 13th years are the hardest ones in marriage...so far they are correct...at least I haven't been told any other years that stink so maybe there is a light at the end of the tunnel! When this is all over, I am sure I will have learned and been made stronger. I know the Lord is walking me through this every step of the way...through the laughter and the tears...because when I can't take that next step he picks me up and carries me.

Halloween

This year for halloween I was really stressing out. I usually have costumes all made by the end of September and their is never any question as to what the kids will be. However, this year, a week and a half before the holiday, I still didn't know what the kids would be and obviously didn't have any time to make anything for them.

Great Grandma must have known my frustration and decided to be helpful and hold her funeral a few days before hand. Thanks to the Schiess side of the family, the three older kids got to spend Halloween in Disneyland and I didn't have to dress anyone up except for Odette...who is easy because she hasn't developed the picky jean yet!!

We dressed Odette up in Josselyn's old monkey costume. She looked cute in it for a while, but we didn't leave it on long because it was so hot for her and us to hold her. She did get to go on parade in the hall to show off her costume and met up with cat in the hat, a pirate, dorothy and a bumble bee. She didn't eat any candy, but had fun letting the Dr. and Nurses trick-or-treat her candy bucket!

BELIEVE

I love one word "phrases" that mean so much. If you ever come into my house, they are posted everywhere. I put them up to remind me (and hopefully the rest of the people that live here) of lessons taught and learned. Lately, it is BELIEVE. It is funny how one word can trigger a string of thoughts, feelings and emotions. In many things I have been told, scriptures I have read recently and music that keeps playing in my mind, the word that has been frequently "popping" up is BELIEVE. I wanted to share a few shortened thoughts:

• BELIEVE-Do not fear
• If only you BELIEVE...
• BELIEVE in yourself.
• He BELIEVES in what your doing.
• He BELIEVES in who you are.
• BELIEVE in the Savior, Jesus Christ.
  

I only wish I could have you hear what is playing in my head, it sounds so much better. I do know that BELIEVING is half the battle. If you can do this much, miracles can, will and DO happen.