Sleepy in Saratoga

We are all tired and exhausted at this house here. Kathleen survived a three day girls scout camp where she road horses. She was so excited and had tonz of fun! Brandt has just finished up his last swim meet at the Silver County Championship meet. Of course he did great! Odette has finally stopped puking and is home after an unexpected week away and Josselyn, well lets hope she will sleep in her own bed tonight! Life has been busy and rough this week, but it is excellent and wonderful to all be home under the same roof together. I love my family...especially when we all get to go to bed early!

FRUSTRATED!!!

Odette has been in the hospital for the past three days because she has not been able to keep any food down. She can keep pedialite down but nothing else. She has awful sores in her mouth and throat, from the chemo she just had, made worse from all the puking she has done. It is so bad that she has been puking up blood. She is in obvious pain and it is worse when you lay her down flat on her back. If you keep her sitting up by holding her or sleeping in her carseat, she does much better. Now, most of you who have had a baby know what it sounds like she has. Reflux right? Well, the doctor when they discharged us last took her off some of her medicines. I didn't really think about it because she is on so many other ones that do similar things. Doctors are suppose to know what they are doing, right?! Wrong! (Sorry Amy, I am sure that Aaron has a good amount of knowlege!) We finally conviced them that her symptoms today were like reflux and if there was any medicine we could try for it...you know what they prescribed? The one that they said we didn't need any more of when we came home. Hopefully this drug will work so that Odette can eat, be happy and come home. She is so miserable and in so much pain...and to think that she didn't need to be! Obviously medicine is a guessing game, but how frustrating that the doctors didn't think of this earlier by looking at her chart! AAAAAAAAAh!

A family tradition

Since we are at the hospital frequently, we decided to get a family zoo pass. Each year we always go once to a zoo somewhere. Our favorite has been the San Diego Zoo! The kids have enjoyed the zoo trips at least once a week. Josselyn's favorite is the fusa and sitting on the elephant that makes noise. Brandt loves the reptiles and Kathleen likes the whole thing, especially the merry-go-round (my least favorite part!). Maybe sometime we will actually be there at the right time so we can see the bird show from the seats!So, if anyone is ever planning a trip up that way, let us know, we would be glad to join you!

At Home in the Hospital

This last round of chemo was really rough! We got the go ahead to go home with Odette after a short 5 day stay. This was short lived when the next morning Odette had been puking all night and was showing signs of dehydration, so we went back up to the hospital where they pumped lots of fluid in her and a few hours later managed to pee out of her diaper. (Just a note...Huggies are the absolute worst diapers I have ever used! They don't hold anything in for Odette! I am so glad that I don't buy them, but they are just given to me at the hospital, so when I use 10 a day I don't worry about it! Maybe they are better for boys, but target brand deserves 5 stars from me!) Odette has lots of sores in her mouth and down her throat and this is why she isn't eating. Kind of like bad reflux...burns going in/out. The doctors have decided that they will put the next chemo on hold for about a week so hopefully she can heal some before getting beat down again. Then we start all over again and might be another 27 day stay in the hospital. They did say that the first six months are the worst and then it does get better--or we are at least used to everything! I'm at least glad that Odette feels at home in the hospital and can get some sleep and with her families favorite cartoon character-Scooby Doo!

Money Money Money

Okay, so we are having a competition. We just got our first itemized billed for our first stay at the hospital. Whoever guesses the closest to the amount billed-this is before insurance pays their part(at least I hope so!)-can pay our bill! I'm just kidding! I just about fell over when I read the amount, so make sure you are sitting down while reading this. Are you ready?

$111,512.37

Anyone guess close? My guess was half of that and I knew everything that she had recieved in the 27 days we were there! So my advise to all of you...if you think that you are prepared, think again! Our rule was always to have $1000 per person in a savings account for an emergency. Obviously this is not enough. However, the nice thing is you can always be prepared completely for other things. You can have a year supply of food, clothes and of course toliet paper! When push comes to shove you will definately want some TP! I know that since we are prepared physically and monitarily the best we could be, we will be blessed. Might not be getting the latest and greatest for scrapbooking or sewing for a while, but we will have enought to make it through the rough times.

So, save those pennies you suck up in the vacuum cleaner! You might need them some day and besides that, they aren't good for your vacuum!

Roller Coaster Ride

Life is absolutely crazy!! One minute we are up on a peak seeing great things happen with Odette and the rest of the kids and within seconds this has changed! While at the hospital this last time, we started out great--Odette's spinal tap went good and we were in the room awaiting the start of chemo--then it was puke city for the next few hours, days of puffiness and then fevers and more puking. I thought we weren't ever going to get any food to stay down. Then, after she puked this morning, the Doctors came into the room and said "you ready to go home?" Of course I was and within minutes we were at the best part of a rollercoaster! We were on our way home. The best feeling ever...like your stomach dropping going down a big hill. It is great and crazy to be home again. The older kids have to get use to the "mean" mom again since I have rules here and I need to get used to juggling time since I have four kids and not just one. There are mixed emotions for everyone, lots of crying, hugging, fighting...I just need to remember this to shall pass! Or, (heaven forbid) It can always get worse!

Oh, yeah, we are having hat trying on practice. Although Odette still has some hair, we know it won't be for long and winter is coming (I hope it will at least cool down sometime!). Hopefully she will leave them on for a while if she is use to them. Who am I kidding...my kids leave something on their head?!

Quiet Nights

Odette really does do better at nights here at the hospital! She can sleep through diaper changes and getting all of her vitals taken! At home, I guess I need to start doing the same thing and eveyone will get better nights rest. Things are going okay. Odette looks like a marshmallow-all puffy and squishy. Her eyes open up to little slits. This is because of the chemo, it will go away in a few days. She is doing well and is happy. We are now just waiting for her chemo to leave her blood stream and then we will be back on our way home. She is such a fighter! I am so proud of her and love her. She is also eating from a bottle now, even from me, which is a wonderful blessing! Then the feeding tube can eventually come out-and not because she has pulled it out!

It is funny how things happen, but Josselyn was getting paper out to color yesterday and she found one that I had stuffed in a pocket "for safe keeping until later" and it had this great quote on it.

"Mercies and blessings come in different forms-sometimes as hard things. Yet the Lord said, 'Thou shalt thank the Lord thy God in ALL things.' All things means just that: good things, difficult things-not just some things. He has commanded us to be grateful because He knows being grateful will make us happy."

This is true. The more we can be grateful for EVERYTHING the happier we truly will be. I am thankful to know this and am thankful for our trial at this time. Great things are happening because of it.

Blessings

So we are back for the second round of treatment today. It is so weird that Odette has such different personalities lately. At home she has been so happy, but we walked into the hospital and she instantly was grumpy and would not crack a smile. Then came the tears when all of her vitals were taken, but that wasn't bad. When she has a spinal tap, they put her out. It is frightning to me to watch her look at me with her beautiful open eyes and then in an instant be out and completely limp. Sure I love when she has a nap or sleeps at night, but this is awful. Once she woke up, the puking began. She had to have her bed changed three times in an hour and her daddy had to change his clothes also. Then it was out the other end. I sure hope her diaper rash doesn't get as bad as last time. When things are so sad, frustrating and depressing and I know that there is nothing I can do for this little one, I think of how our Heavenly Father must feel when he sees us suffer, especially needlessly. It must be really hard. I also try and think of the good things. It helps I think to make a list and then life seems to have more rays of sunshine:

• Odette learned how to drink out of a bottle today!
• Brandt and Kathleen are able to do their scouts and swimming thanks to great neighbors!
• Our grass and yard are not dead...yet!
• We got 5 pounds of raspberries out of our backyard in the past two weeks!
• I haven't had to worry about shopping for food or toliet paper because we are prepared for a year or more if you count all my noodles!
• I have had more time to read my scriptures while in the hospital.
• I have made great friends at the hospital and am trying a little missionary work!
• Our family is being stregthened by this trial in many ways.
• Other people are learning from our struggles.
• Josselyn has an excuse for no hair and hopefully she will quit pulling!
• I have learned I don't ever want to be a nurse! (I thought teaching teenagers could be an emotional rollercoaster!)
• I was reminded of how important families are.
• I know we need to cherish, love and be quick to forgive those around us because we never know when they will be gone or the opportunity gone.
• I know HEAVENLY FATHER LOVES ME!

There are so many I could go on and on, but I think that is all you need to know for the time being. Thanks to all of you who have helped me be strong and remember these blessings and what is truly important in life!

Back to the Hospital

Tomorrow we will be returning to the hospital. Hopefully the stay will be 3 to 4 days as expected. Odette will be getting her 4th spinal tap where they inject chemo drugs into her spinal fluid and then getting another high dose of chemo that the doctors need to watch in her blood for a few days to make sure she is getting rid of it quickly enough. My main worry now is that Odette hasn't wanted to eat for a few days much. Tonight she is not able to eat anything after midnight until she is done with her spinal that starts at 9am tomorrow. I think knowing she can't eat is going to make her want to eat.

Hopefully she will be as happy at the hospital as she has been here at home!

Swimming Superstar

Thanks to a wonderful neighbor, Brandt has been able to continue racing with the swim team. He has done excellent work this summer. He won first place in butterfly at his last meet and shaved 5 seconds off his freestyle at saturdays meet! We are so proud of him! Life has been difficult for the kids since Odette has been diagnosed. We are so thankful to all of you who have made it so that they can continue to have as "normal" of a life as possible.

In the Hospital

While we were in the hospital for 27 days, a lot of things happened, so I am going to try and fill in some gaps when I have time. I was of course worried about Odette loosing all of her pretty red hair without getting some for her scrapbook, so instead of waiting for it to all fall out, with the help of a nurse, I gave Odette her first haircut. It was sad, but we have the cute pigtails to scrapbook in all of my free time! The doctors say that hair will grow back about 6 months after chemo treatment stops. This means that when she is about 3 she will begin getting hair. They also say that it will often come back different colors or curly if it was straight before. It is all a mystery and something exciting to look forward to. I personally hope that it is still red, but really curly!!

I Did It!!

As most of you know Odette has had to have a feeding tube for the past few weeks because she was loosing so much weight-3 pounds to be exact. It is quite a nuisance and to be quite honest, ugly. However, it has proven to be useful to sneak in all of her drugs and the formula she needs, so she has almost regained her weight. She thinks she is being sneaky and will reach her fingers up to get it frequently. Well, today she was successful! She got it out twice! Now, I was okay with playing doctor and giving her all her medicines (After all, some of my family think I am always giving my kids drugs-benedryl), so that was no big deal and Ken is okay with giving Odette her shots, but to put the tube back in...well, I got brave and the nurse said it was no big deal--after it took them an hour at the hospital, I had my doubts--so I pushed it in. She was not happy with me, but it is what is best for her and she'll know that some day. You can tell from the picture she was very proud of herself when she got it out!

THANK YOU

THANK YOU!! THANK YOU!! THANK YOU!!
So many of you have helped in many, many ways. I just wanted to tell you all thanks for the meals, cleaning, pulling weeds, babysitting, play dates, running errands, prayers and fasting. I do have some thank you cards ready to go, but who knows when I will get them out and I know there are many things that have been done without me knowing. So, THANKS to everyone who has taken time out of their crazy life to help out with ours! We love and appreciate all of you!

Home Sweet Home

So we have been home for two days now and I find myself missing the beaps and noise of the hospital! However, it has been nice to be home. I don't know if the three older kids would agree with this. They were used to no mom and nice babysitters and now it is back to work!

I thought that keeping up with all the medicines, feedings and maintenance of Odette was going to be super difficult. Josselyn has changed my mind. In the few days I have been home, she has swallowed a penny (The only reason I knew this is she asked me to get her money back and opened her mouth!), spread calmoseptine all over her arms, legs and face, screamed for an hour last night because she had leg pains and everytime I turn around she has taken all the pillows off the couch and is jumping or has some form of chocolate in her mouth and on her hands and face! She might prove to be more difficult to deal with, but I do love her!

Odette is doing great and is SO HAPPY! She laughs and giggles and eats even worse than she did in the hospital because she wants to play and watch the other kids. She has even started to roll around again-something she quit when we were at the hospital.

In the beginning...

It all seems like such a long time ago. Most of you know the story, but in order to cut down on the game of 20 questions, I have decided to start this blog.

It was almost time to get packed for vacation to New Mexico. Grandma Pankretz had come to visit and take the trip with us to meet the new cousins. (And of course for them to all meet Odette!) Late Thursday evening of June 18th Kendall noticed that Odette had some "rash" on her legs. (We now know it to have a technical name, pitichae.) I had figured it was from putting socks on her that were a little small, or my worst fear chicken pox-this would mean no vacation to the new babies. We figured we'd better be safe so friday morning we were scheduled for a doctor visit. The doctor knew right away what the "rash" was and sent for blood work, but told me he wasn't worried since Odette hadn't been sick. Four hours later the doctor was calling and apologizing for dropping a big load on me but that we needed to rush up to Primary Children's Hospital, that they had a room for us and that our lab work had come back very abnormal. Then he said the word leukemia and my heart stopped. We grabbed the diaper bag, which only had stuff for Josselyn in it, a package of diapers and left. Thank goodness that Grandma was there to be with the other children.

The next couple of days are a blur. Odette was poked with more needles for more blood work. We were told that she would have a Central Line put into her chest in the morning so that she could get chemotherapy without an IV and this is where they could also draw blood as necessary. The diagnosis: Pre B ALL in an infant, extremely rare and just a random act of nature. Nothing we did or didn't do could have prevented or caused this cancer. It is just Odette's trial that she has to go through and just dumb luck. (When she is older we are going to have her buy a lotto ticket!)

After making it through surgery and having a spinal tap, it was onto chemo. We were still pinching ourselfs and praying that we would wake up from this awful nightmare. However, with a lot of blessings, prayers(thanks to all of you!) and faith, we made it though sleepless nights, being covered with puke, fevers, lots of crying(from everyone), 27 days of the most expensive "hotel" living and the first round of chemotherapy!

Odette came home to everyones happy faces on Thursday July 16th. This is one of the first times she has truly smiled, laughed and been happy since the day we left. We feel truly blessed to have such great family and friends who have done so much for us....meals, babysitting, cleaning, phone calls. It will be a long two years, but we know that we can make it through with all of you!

Hopefully between 20 minute diaper changes, feedings and drugs I will have time to keep everyone posted on Odette and of course our other three balls of fire!