Thursdays

I DO NOT LIKE THURSDAYS!  At least for the moment.  They are the day that I have to give Odette a dose of Metheltrexate.  I absolutely think that this is the worst chemo drug there is.  Each time she was given it in the hospital, granted it was a very high dose, but it took a couple of weeks for her to be able to hold anything down!  Now, I just get her doing good, a puke or none a day and have to give her this drug and she pukes the rest of the day and a few times for a day or two afterward.  How on earth am I ever suppose to get her to want to put food in her mouth and actually swallow it when I have to give her this?!  At least it is just once a week and not every day like the other chemo I am giving her.  It doesn't seem to be affecting her in any way, except she doesn't sleep very well...we are always down on the front room floor.  (Why she can sleep there, but not in her crib is beyond me!)

Other than the puking, Odette has been doing really well being at home.  She can almost crawl and it cracks me up to watch her kneel and then do a "boys" push-up and walk upward and throw herself forward.  She thinks it is great because she can get to anything she wants, including Josselyn who use to be just far enough away to make her mad!  She has the cutest giggle and loves to tease her siblings.  Odette is also very smart, after all the watching she has been doing, she has been able to put her knowledge she has acquired into action!  Any time someone says "no" or "don't" she will shake her head back and forth.  She loves to wave bye-bye and give kisses to the kids at bedtime and smile for the camera.  Her favorite words are dog and dad and I am pretty sure she can say Josselyn in her own dadadada language!

Strong Enough

I am constantly being told that "You are so strong. I could never handle the things you are going through now."  For some reason, this comment really frustrates me.  Each of us is blessed with different strengths and weeknesses.  (Can you imagine how dull life would be if we were all the same?!)  Since we are all unique, we each have our own set of trials.  What I can do and what someone else can do are completely different, but each test will stretch us a little beyond our current abilities, teach us to love a little more than we would have and strengthen us.  You are strong enough for what you need to do.

I was thinking about this on Sunday during our Relief Society lesson.  It was about the Savior and how he suffered alone for each one of us.  Only he could suffer this way for us.  He was all alone and couldn't have anyone else do it for him, but thank goodness he was strong enough to do what he needed and wanted to do.  Each of us have things that only we can do, however, when we are suffering and we feel we are all alone, we need to remember we really aren't all alone, because he was strong enough and went through what we are going through right now.  He knows all of our emotions, thoughts, feelings and most importantly, our heart.  We may feel alone, but we are never alone, we just need to allow the Savior to pick us up and carry us.  We, together, are strong enough.

So, don't feel like you could never do what I have to do, because if you were asked to, you would be strong enough.  (I am praying you never have to go through what I am experiencing now.)  Be thankful that you are strong enough to grow in ways that you are asked to.  If you don't think you are, then ask-HE IS STRONG ENOUGH.

Christmas Day

On Christmas Eve we have a tradition, like I am sure that most of you have as well and that is to have everyone get a new pair of PJ's to attempt to sleep in that night.  Amazing enough, this year I was still able to make the kids their pajamas.  Josselyn didn't want to wear hers because they were "too big"!  (They were exactly how they were suppose to be, but she has some serious touchy feely issues!)

In the morning the kids were given instructions not to wake us up until 5:30, which is when I have to get up to start Odette's medicines and feedings.  At exactly 5:30, the two big kids were in our room saying "get up, get up we want to see what Santa brought".  (I'm thinking to myself, you just walked through the living room where it all is, duh!)  I wasn't near fast enough for the kids!  Josselyn was also still asleep so we woke her up. At least she was happy because there was a pretend banana in her stocking, which is what she asked for!

Brandt got his Mt. Bike that he had been asking (more like begging) to have for over a year since he is "too big for my kid bike"!

Kathleen got all sorts of crafty, art stuff, which is her absolute favorite thing.  Mom is the one that doesn't like this stuff because it makes a huge mess with little pieces and I have to be a good supervisor/helper of the projects.  I think she got some stuff that I won't have to help as much with.  She has already loomed one hot pad!

Josselyn's favorite thing to do is play cooking in her kitchen.  With the help of a neighbor, we refinished a little table and two chairs.  They turned out great and Josselyn enjoyed the day feeding everyone her gourmet meals on her new dishes.

Odette loved everything and was way over stimulated!  She chewed on all her new little people toys and I am sure other things that she shouldn't have, but she was home and so happy!  She even ate red and green jello to celebrate--totally awesome!  (Now if the jello had all the nutrients plus 100 calories we would be in really good shape!)

For the biggest kid at home, Santa brought a nerf machine gun.  It was great fun for the entire family and now we have something to protect us from all of Brandt's weapons!  (Watch for a nerf gun war coming soon!)

Christmas Day was great this year.  Thanks to all of you who helped to make it wonderful.  I definitely still believe in Santa!

Christmas Letter 2009

So...with all the help and added chaos at my house, I just realized that some people did not get my annual Christmas letter.  So sorry, here it is, just no picture because I don't have it digital.  

Happy Holidays Family and Friends!

Each year I enjoy sending out letters telling about our adventures of the year past.  Even more, I love to check the mailbox daily for news from each of you.  I love getting things in the mail other than very expensive bills!  (Who doesn't?)  well, onto the exciting stuff.

Brandt is eleven years old!  I can't believe that we have a child old enough to babysit.  It seemed that we would never be able to have our own babysitter - then again, I thought I would never be old enough to drive!  Brandt did awesome swimming this year and got a plaque for swimming the butterfly.  He won 3rd place in the country meet!  He is so excited about swimming and reminds me that he is going to get a job teaching swimming in a few years so he can be rich.  He also finished up all his requirements to get his Arrow of Light in Cub Scouts.  He is doing excellent in school, even though he isn't in the ALL program this year.  He is an awesome big brother that his sisters are so glad to have  We went to his Priesthood Preview a few days ago and he told me, "Mom, your little boy is growing up!  Don't worry though, I still have a few years!"  Too late-I already miss that little boy.

Kathleen turned eight this year and was baptized.  She made her mom and dad very proud and she looked beautiful in white.  She also started the third grade and is doing well for the little help she is getting with her homework.  She started doing girl scouts and has enjoyed many fun meetings and going to a horse riding camp.  She also is a very good cookie seller - save your money for January when you get her phone call!  She has been working hard at playing the piano and loves to practice when Odette is listening because it makes her smile and laugh.  We couldn't ask for a better big sister.  She takes excellent care of her two little sisters, even if it drives her crazy to let them touch her toys.  She is very loving and kind to everyone.

Josselyn has passed the terrible 2's and onto the terrific 3's! (That's what it is supposed to be right?)  She is still mischievous, but she is honest about what she is doing whether it will get her in trouble or not!  She loves to watch Scooby Doo and it is difficult to try and watch anything else when she is around.  She also loves anything princess-Briar Rose is her favorite-and wears a dress each day!  She has finally decided that a princess movie is almost as good as Scooby.  She makes me laugh, cry and panic.  I don't know what life would be like without her around to keep me and many others entertained!  She has unconditional love for everyone and will give anyone a hug and kiss if they are brave enough to ask!

Odette is one year old and the most beautiful, brown eyed, bald baby I have ever seen!  We found out on June 19th that she has leukemia.  She is finally starting to feel good enough that she sits up really well and is attempting to crawl.  Now if we could get her to decide that she likes food as much as her big sister!  She has been quite the fighter since June and we are so lucky to be her parents and have her as part of our family.  She still has about a year worth of treatments to go, but she will be at home much more during this next part of her treatment-yeah!!

Ken is still working at SSA Marine, which might not be gymnastics, but a job with insurance! (Hard to come by these days.)  This year he finished the laundry room and it looks awesome!  He is so great at building things.  I am not quite sure what he will work on next since the house is finished...maybe a new back porch!  If ever I think he is lost, I just look by the computer.  His favorite past time is to get lost in the World of Warcraft.

This year life has changed dramatically, but we have been greatly blessed.  We did manage to go to the beach and visit Great Grandma in the spring before her passing.  The kids also enjoyed going to Disneyland this year with the extended family.  We are so greatly blessed to have great family and friends like you!  We are also very grateful for the birth of our Savior this time of year.  May your holidays be Merry and Bright!!

Christmas Fun

This year, we had some new Christmas experiences.  Since Odette has been sick with cancer, we have made a bunch of new friends and also been invited to be involved in some Cancer groups.  For Christmas, this Cancer group had a Christmas party.  We didn't dare take Odette because her counts had been low and all she does is puke.  I decided that I wanted to be sick and Josselyn was beyond tired, so Ken took the two older kids to the celebration.  They got to have pizza and pie, play lots of games, meet the BYU basketball team and yes, sit on Santa's lap--they even got Ken to smile and sit by Santa!!

Another thing we did new this year is go to Thanksgiving Point to see all of their lights.  (Way over-rated!  We decided it was better to go freeze at Temple Square than to pay $8 for a five minute or less drive in a circle!)  Each year, I always beg Ken to go and look at lights and we never end up doing it.  Lately we have been trying to think of things that we can go and do as an entire family, not just one parent and three kids, but to take Odette as well.  We don't want to go take Odette and expose her to all the crap that is out there this time of year, so we decided anything that we can just stay in the car would work.  All the kids enjoyed the lights, but Odette and Josselyn thought that they were great!  Josselyn especially liked the fact that she got to help drive the car while looking at the lights.

 

Home

We have been home for two weeks today! In June when they said the hardest part would be over by Christmas, I prayed for Christmas to come, but felt I could not make it until then and low and behold, we are there! It hasn't been an easy road for our family, but together we have endured through the good, bad and the ugly. We are not even half way through the treatments for Odette, but we are to what I think should be much easier. (I better be careful what I think or knock on a piece of wood!)

It has been hard to get back into a routine here at home and still be doing what I and a nurse would be doing at the hospital. Odette is still really sick from the chemo and hasn't had a day of no puke in what seems like an eternity. She is still in need of medicines frequently, however not in the middle of the night unless she wakes up. We are also doing her chemo now at home because they are oral chemo drugs that I just put down her feeding tube. They shouldn't drop her counts like in the past(they will still be low so we still need to be real careful) and that is why we are allowed to be at home. Our biggest and most frustrating thing at the moment is getting her to learn and want to eat. She never learned how to drink out of a cup or a bottle because I was nursing her when she got sick. She won't put any food near her mouth-except a sucker Mel gave her the other day! It just doesn't taste good to her and she knows that she chokes and pukes up everything that seems to go down her throat. It would be awesome to have her eat and drink on her own...the fight to get medicine down her throat doesn't seem like such a big deal.

The other kids are having a hard time adjusting since the "meanest mom on earth" is at home and expecting them to clean their rooms, do their chores, practice their music and do their homework. It is also hard because when Odette is around we can't have friends over and so they get pretty bored. (If you ever want an extra at your house, feel free to call!)

All in all, dinners together, movie nights have returned, sleeping in my own bed(most nights), using my own shower, cooking my own food and getting more exercise than just rocking Odette-come on my stairs count-has been terrific. I am grateful for the lessons learned in the past six months, but I am even more grateful for the "at home" future that is ahead of us!

Speechless

I am in total awe at the outpouring of "gifts" for our family during this Christmas season. It is amazing to me the love of neighbors, family and total strangers. I know each act of charity is a blessing from my Heavenly Father in answer to mine or someone else's prayer. Thank you!

The Longest Dr. Apt.

I don't know about you, but every time I use to go to the Dr. office I would read the sign that goes something like: "a charge will be given for any missed apt" and then be very irritated. I was on time for my appointment, but I waited an hour for the doctor. Is it okay now for me to charge them because they "missed" their appointment? That's how I think it should work anyway. (One time they did actually give me a $10 gift card for a restaurant because they were so slow.)

I use to think that 2 hours at the doctors office was a super long time. (It is, right?) Today was our first outpatient doctors visit. Just the driving time alone would beat my two hour limit, so I knew I was in for it. It started at 8 am and we left the hospital at 1:30! (I know I should just be grateful about the word "left") The doctors visit went like this:

• check in and get weighed, measured, blood pressure (Crap, Odette has lost weight again!)
  
• sit in the room (Screaming from poor Odette who hasn't been able to eat for the past 12 hours and puked all day yesterday.)
  
• have a nurse draw blood and wait for lab results (She actually is good in everything except a little low in the red blood cell department.)
  
• doctor comes and looks at Odette (Her ears are finally not red! "If she is still puking with the anti-medics don't give them to her, she is a baby so expect puke." Mom is mad.)
  
• go down to RTU for spinal chemo and a bone marrow aspirate--wait a half hour for Odette to wake up from the anesthesia
  
• try to get Odette to eat/drink something so we can leave RTU (One swallow works, right?)
  
• go back up to clinic and get her "regular" chemo
• have doctor explain the new maintenance chemo routine and order prescriptions (Should have done this earlier, but like a regular doctor office was running late and we needed to get down to the RTU.)
  
• wait an hour and a half to mix the chemo prescriptions, get our chemo schedule for the month and schedule our next visit--not for 4 weeks!! :)
• go brag to the inpatient nurses that we are going home
• get our prescriptions by paying an arm and leg! (Only $70--I thought it would be at least twice that!)

Now that is a long doctor visit...I don't even want to imagine what it will be like getting chemo and a blood transfusion...probably we would get a fever and be stuck in the hospital for a week, so no need to worry.

I am so excited that I get to be home and take care of my children and attempt to have a clean house so that Odette doesn't get sick with any fevers! We get to have the holidays at home. I couldn't have picked a better gift for myself!

Snow Day

Today was the first day that there was actually enough snow out that the kids could attempt to play in it. They were all very excited to get all bundled up to go out. Brandt and Kathleen went sledding for a while, but then decided they were going to start piling snow up so eventually there would be enough snow in the pile to make a fort.
Odette had been watching Josselyn slide down the little ramp in the back yard that the big kids and Ken made for her, but just kept on screaming and pointing out. I figured that her counts were up and a couple of minutes wouldn't hurt her, so I bundled her up and took her out.
The little girls thought it was great and even Ken must have been having a nice time because he was smiling--even showing his teeth! Odette was even brave enough that we put her on the sled and let her go down. She was a little bit more slippery than the sled and ended up off of it. She was smiling and squealing still. Not until we went in the house and she was mad did she end up puking. Oh well, I think it was all worth it!
The kids can hardly wait until the next time that there is a big snow storm and mom decides its worth all the struggle of getting warm clothes on again! I am sure there will be plenty more days like this to look forward too!

Lemonade

"When life gives you lemons, make lemonade." I am sure that you have all probably heard this saying. It seems easy enough if you are given lemons (a few at a time) to make lemonade, but right now, I feel like I am being pelted with lemons from every direction! ("When it rains, it pours!") I don't even have a second to put a glove on to catch them so I can even attempt to make a drink!! Even when I do manage to make lemonade, it is SO VERY SOUR!!

At least I think it is going to be sour, and then I start drinking and realize it isn't so bad because of the bits of sugar added to it from you...a phone call to say you are thinking about my family, a kiss from a crazy 3 year old, a smile, an offer to run errands and knowing you are all praying for my family's wild and crazy life...then I know that my lemonade has been sweetened to exactly what I need. Thank you for helping me not be so burdened down that I can't make it through another day.

Pink

"Mom, I am adorable in pink makeup." This is what Josselyn informed me of as she looked at herself in the "show me the beast" mirror. Obviously her favorite color is pink, Kathleen should hide her makeup and I shouldn't go and flush Odette's feeding tube without taking Josselyn with me! She is adorable though!

GI Test

Today Odette made a trip up to the hospital and actually came home in a two hour time frame! I have to admit that I was really worried that we would end up admitted because that is always how it has worked out.

Today Odette had an upper GI test done to see if they could find anything to explain her puking constantly, even though she hasn't had any chemo for three weeks now. She had to drink some dye, and much to my amazement, she drank it right out of the cup. When the doctor said that was enough, I took it away from her and she through a huge fit. I guess that we need all her food to taste as yucky as I am sure that dye stuff tasted! Anything that looks like chalk can't be that good. They won't know for sure the results until next week, but it didn't look like anything was out of the ordinary. I don't want anything wrong, obviously, but it sure would be nice to know how to slow or stop the barf.

Christmas Tree

What better way to celebrate that the family will be home together for the holidays than to decorate the Christmas tree. Each year we usually go and pick a real tree because I love the smell. Of course, we are never able to afford a real tall one, so we joke about having a "Charlie Brown" tree. They are never taller than I am! This year a real tree is out of the question because of all the "junk" it has on it would put Odette at great risk. I have a great friend that knew this and called to tell me that she had our tree for us. It consisted of 2 1/2 yards of green butcher paper and numerous sparkly papers for the kids to make decorations. So, no Charlie Brown tree, we have the tallest tree we have ever had...almost goes all the way to our vaulted ceiling!
The kids all enjoyed cutting and pasting the decorations for the tree. Odette rolled all over attempting to get the tree and eat the ornaments. She was successful a couple of times to make it to the tree! (Yeah, this means she is trying to crawl!) Josselyn loves trying to reach the star on top- with the help of her daddy. Brandt and Kathleen of course enjoyed doing something crafty that didn't involve just crayons and paper. (This is all they have been able to use without mom home for supervision.)
The kids had so much fun making our tree this year that the comment was made, "We should do this every year!" It was tons of fun and a lot cheaper I am sure than buying a real tree, but I am sure it is just as messy as a real tree! (Garbage pick up should be easy though since it will fit in a garbage bag!!)
I am so thankful to so many of you who realize the little things in life that make such a big difference to my children and go out of your way to help them be able to experience life in a fun, new way! May your Christmas be Merry and Bright!!

Maintenance

We finally made it! I never thought that I would live to see the day that we were onto the maintenance part of Odette's chemotherapy. The days and nights past have been so very, very long, but with all the faith, love and prayers everyone has offered in our behalf, we have survived the past six months! I have never done and hope never to have to again go through something so very hard.

Odette, and family, still have a long road ahead. We will be going in on the 14th of December for a spinal tap and to get our teaching about the chemo we will be doing at home. We should have seven weeks of being at home before we go back into the hospital for a couple of weeks of high doses of chemo. (As long as we don't get fevers in the mean time.) Then the process is repeated over again. (Right now 10 days of amoxicillin doesn't seem so bad!) This will continue until we reach week 49 and then we do the final evaluation to make sure that all this worked.

Being at home is going to be great for the family. Having a baby have cancer has had many challenges go with it. It has been really hard on the entire family. Hopefully being at home all together, we will be able to get into a routine and Odette will be able to have continuity and learn. I was sad that I wasn't enjoying Odette as a baby and praying for her to grow up because that meant we would be out of this mess. However, it looks that I still get her as a baby because she is about at the same level as when we started chemo. I still get to teach her to crawl, walk and eat-without puke I hope! The nicest thing is that she still loves to cuddle like a baby...lots of days this is my best medicine.

Hooray for Odette being such a great fighter! She has beaten the odds and proven that she has a very strong spirit to share with many!

Transfusions

Once again, Odette was in need of a platelet transfusion. Her count was at 7 (normal is 150 to 400) and she was getting random bruises appearing, not to mention that ones that were where she got her nupogen shot or rolled over her feeding tube. So today while getting the transfusion, I realized that I have ever explained how transfusions of blood products works. Remember that this is just my understanding. I am sure that stuff is a little different than how I explain things.

Before you can even order blood products, you need to first now how much the patient weighs (7.4 kilos-this hasn't changed since we were admitted) and her blood type (O positive). Then the doctor will figure out the amount she needs and order from the blood bank. Once we get it at the hospital, the nurses have to do some double checking to make sure it is the right type and okay and then we can start the infusion. It is always good to double check that you are giving a patient the right stuff-kind of like measure twice, cut once!

Odette is hooked up with her central line for the infusion. For platelets, they are sticky so they are run in quickly, over about a half an hour. Red blood cells are run in over a longer period of time, about two hours, because its a lot of liquid for the body to absorb. During any transfusion, vitals need to be taken frequently to make sure that the body is not having an adverse reaction to the new materials being put into the body. Vitals consist of temperature, oxygen level, heart rate and blood pressure.

It is a simple procedure, but a very vital one. Most people can donate blood, but you can't choose whom the blood goes to. You can donate at any blood donation bank and it only takes a couple of minutes and it can be done frequently. You can also donate platelets, but I am told that it takes a couple of hours to do this. I am so thankful that so many people care enough to take the time out of their busy schedules to donate, especially since Ken and I do not have blood that the banks want! Thanks for helping save Odettes' life in a way that we can't! Keep donating so we can continue to transfuse!!

Family Time

A few months ago, my sister Katie decided to take her chances and come to have Thanksgiving with our family. She new that life is very unpredictable at our house, but was willing to come anyway. Unfortunately, Odette was in the hospital the entire time she was here to visit, which also meant that I was gone, so Katie ended up being our babysitter. It worked out great to have her here to be with the kids. I am so grateful that I have such a great family that goes out of their way to make sure Ken and I have everything that we need and then some and love us unconditionally.
When Ken was with Odette on Saturday, the kids, Katie and I had some "family" time. (I can hardly wait until our family time includes everyone!) We went to see the lights on Temple Square, or as Josselyn kept calling it- "The temple of squares". It was fun to look at the lights especially since it wasn't too cold yet. The favorite was the lights on the fountain and the pink lights. (Who ever would have guessed that the pink ones would be the favorite!)
I think Josselyn's favorite part was riding on the trax train. It was difficult for her to stand and wait for it to come and once it finally got there, she was running to get on and when it was time to get off, you can probably guess, it wasn't the funnest thing for anyone!
We also went and saw the 3D Christmas carol. The kids thought that the glasses were really cool. Josselyn wore hers for all of 10 minutes and then would put them back on every time it would start to snow. The movie wasn't all that great, but being with the kids was lots of fun.