At Home Again

Finally after spending 17 days at the hospital, Odette was able to come home on Thursday. She always gets excited to get in her car seat at the hospital because she knows she is going home-the only place she goes anymore other than the hospital!

She did do pretty well with this last round of chemo. She ended up having a fever for a few days and we found out that she has pseudomonous- a grahm negative bacteria that is just part of your normal flora, but very harmful when you don't have any immune system. She did eat well this go around, and we even got her to drink some out of a sippy cup! Her favorite food currently is mashed potatoes with chicken gravy- she is one of my kids!!

We go back to the hospital on Wednesday to get, in mine and Kens opinion, the worst chemo ever- high dose metheltrexate. I hope and pray that her body is stronger this go around and it doesn't have such awful affects as last time.

For now, we will forget that we are going back and enjoy a few happy, relaxing days at home.

Pretty People Picking Perfect Peaches

This year is the first year that we let our peach tree get peaches. We wanted to make sure that it was big and strong so it wouldn't break, besides we were told that you needed to not let a tree fruit for a couple of years after you planted it. We were so excited to let it fruit this year, but we figured that we would get just enough peaches to eat a couple for a week and that would be all. As summer came it didn't seem like there was that many peaches on the tree and we were constantly finding little ones on the ground from the wind blowing. I hadn't really paid attention to the tree since I was never home to do so. A couple of days ago when I was home, I realized that it was peaches canning time-not that I have time to do that, but it made me look at the tree! It was an awesome sight! We had lots of peaches-more than I had time to deal with. The kids had a great time picking the perfect peaches. (Ken helped me with the title-figured that you could try and say that 5 times fast!) Brandt freaked out with the bugs and Kathleen just got bored doing it, but Josselyn endured to the end and climbed up to get the really high ones. We got enough to dehydrate, freeze, eat and some will probably be going to the hospital if they aren't fertilizer by next week!

A day with Odette

Some people have asked me what all happens while at the hospital with Odette, so here is my best attempt at "A Day with Odette".

I am not quite sure what time to start the day since the hospital never sleeps, so I figured that they start at Midnight as zero and go from there, so here it goes:

At midnight Odette gets her vitals taken. Vitals consist of a blood pressure taken on her leg, getting her heart rate and oxygen level which is done by putting a pulse-ox on her big toe and taking her temperature in her ear. She gets her diaper changed then and also is usually given some sort of anti-nausea medicine. Amazing enough, she sleeps through all of this!

At about 2 am it is time for some more drugs again. This is the only time a feeding tube has come in handy because you can sneak them in while she is asleep and she doesn't even notice.

At 4 am it is time for vitals again and also time to draw blood for labs. It use to be that she would sleep through this also, but her line has become more positional, so if the blood doesn't just pour out, we need to wiggle her. We have discovered that if you make her arch her back and have her head back the blood will come. After blood is drawn and more drugs are given and her diaper is changed again (We have to change diapers often to check urine output and to help with having the chemo coming out in the urine from burning her butt.) she will usually rock right back to sleep.

At 6 am it is time to give more medicines both oral and currently IV since she has an infection. It is also the first feeding of the day. She usually sleeps through this.

By 7:30 the "real" day begins. It seems like everyone is peeking in to see if she is awake so they can begin their job. Could be that the nurses change at 7. The nurse practitioner comes in to listen to Odette and do a quick overlook of her so they can talk to all the doctors and give them any information they need. I am told what Odette's blood counts are for the day and if we will need to do any transfusions or if there are any concerns, such as her potassium levels are high(they have been for about a week now.)

8 am is time for more vitals. They take vitals often because things in Odettes body can happen so quickly. If a fever is going on, it can be life threatening. Usually Odette is awake now and getting bugged at everyone who is poking at her. By now we have also had the attending doctor come in and sometimes even the resident. All of them do the "physical" overview of Odette

9am is feeding time again and we get to try real food along with her formula that is put in her feeding tube. She loves when we order from the room service menu. Especially since the past few days they have given her a toy to play with! Usually she is tired out and she will take a nap. While she naps, the cleaning lady will come in and bleach the room and mop and dust. I also usually get donuts or bagels off the hospital cart that comes around this time.

Odette's sleep pattern is random, but usually she is pretty playful in the morning. She has not had to be hooked up to the IV a lot lately because she is keeping enough fluids in her from all her feeds. We play on the mat on the floor with toys, pratice sitting up and rolling over or, if her counts are high enough we take walks in the hallway. She loves to leave the room and talk to all the nurses and techs and doctors! She is such a social butterfly!

10 am she has more medicines

11:30 ish is when we try and feed her lunch and she gets her formula at noon along with another set of vitals. Hopefully they don't find she has a fever. A fever is anything over 100. If she does, they will draw blood cultures to see if anything grows and will start her on an antibiotic for protection.

By 1 in the afternoon we have usually seen the"real" doctor for the week and asked him all of our questions, like what drugs would be best to keep using or discontinue or how is she responding to chemo or, if we are close to the end of treatment, when does it look like we could go home.

2pm is snack time, nap time and more medicines. We have tried to keep her getting some anti-nausea medicine every two hours to keep control of the puking and so far it has worked quite well.

3pm is formula time again and we play. Odette likes to sleep more during the day time than at night it seems to me. Every time you start to rock her, she curls up in your arms and with you singing, she will fall asleep. However, she loves to sing head, shoulders, knees and toes and then she won't sleep, she laughs and has you sing it for what seems eternity! It is always great to find something that she loves.

4pm is vitals and drugs once again. Don't forget a diaper change as well if it already hasn't been done. When she is on antibiotics and chemo, you have to do diaper changes frequently because she gets diarrea or pees a ton! Her bumb is famous around her for how bad it once was, and for how she now has a cute "baby" bumb. I hope it stays this way!

I almost forgot! Sometime in the afternoon or early evening is chemo time, unless things get started really late and once it was at midnight! Some of the drugs run in for 24 hours, some 1 hour and some are just a shot. It varies and she doesn't always get chemo every day while in the hospital, just most of the days. Once her chemo is done, we are waiting for her blood counts to be going up which means that she will be able to make some of her own cells and have a little bit of protection against being sick.

6 pm is formula, drugs and dinner time. She loves mashed potatoes with chicken gravy and dinner rolls. Of course you have to break the dinner roll apart or she will cram the whole thing in and then laugh!

7 pm is mom and Odettes favorite time. It is when we call the kids at home and talk to them and tell them goodnight. Each of the kids love to talk to Odette and she just smiles huge and will try and eat the phone. If the kids are lucky, she will squack a little at them. Just hearing their voices makes her so happy!

8pm is vitals and drugs once again and a new nurse comes in for the night. We usually watch tv or go on an evening stroll.

9pm is her final feeding of formula for the day and when I attempt to get her to fall asleep. Usually this isn't too successful because all the night nurses come to say hi to Odette and love her because they have their other patients taken care of. Odette definately has made some great friends here!

10 pm is drug time and mom is exhausted time. I always hope Odette is asleep by now. If not, I have been trying the put you to bed, kiss you and hope you can teach yourself to sleep. However, she must like the dark because she will talk forever to herself and laugh until she rolls and gets her legs caught out the crib. Then you start the routine all over again. It is funny, you can say "SHHH" and she'll quit talking for a minute, but then will start all over again. She is quite the turkey at night.

By 11 or so she is asleep and so am I. Ready or not, the day starts all over again at midnight!

Smiles

While I am at the hospital, I enjoy the time I get to spend with just Odette. We blow bubbles, read stories, play with toys, watch Mickey Mouse, snuggle, give kisses and take naps. It is nice to be able to spend time with just Odette, however I really miss the other kids at home. I call them quite a few times during the day to talk to them and check up on them, but I feel like I am out of the loop with everything that they are involved in and that I am missing them growing up. When I do get the chance to come home I am really excited to be with my kids there, but then I am missing Odette. This is probably the hardest part of my life right now, not having everyone be able to sit on my lap at the same time! (Not that I have that big of a lap...maybe sit on my belly!)

Today I went up to visit Ken and Odette at the hospital since Odette was getting her spinal tap and although it has happened plenty of times, it is scary to watch your baby be awake and playing and in an instant out cold. It was then that I thought about how much I enjoy that little girls smile, laugh and toungue(she has just discovered that she has one.) No, I am not thinking my Odette will be gone soon, but what if she was? I decided that I needed to make sure that I enjoy every minute that I have with all my family members...enjoy their laughs, smiles, hugs, tears and even the crayons on the wall. (It is just a wall right?!) Forget about all the silly stuff that you get hung up on and take time to make your kids laugh or help them make a mess and finger paint!!

Miracles

I use to believe that miracles had to be something really big and awesome, like seeing an angel. I figured that I would never experience any because, well, you just don't see angels that often. This week I have been thinking a lot about what is going on and it came to me that I have seen and experienced many miracles in the past three months. I would like to share a few of them with you and maybe then you can also see the miracles in your own life.

Just this week, Odette got really sick again with a high fever. I always freak out when this happens, because her heart rate goes really high and she just looks terrible. Anyway, she got this fever and they took the usual blood cultures and started her on antibiotics. Nothing ever grows on the blood cultures, so it seems we never know what is wrong. This time, something grew rather quickly, a grahm negative bacteria. These are really hard to kill the doctor told me and said that most kids without immune systems end up in the ICU-I think it is bad enough where we are at. After he told me this, the next time they took her temperature, her fever was gone, heart rate down and she started to eat and play again. Not an angel, but definately a miracle to me.

Also this last week, Ken started getting sick. Definitely not what we need right now. The next day a friend called and asked how she could help. She went to my house, cleaned and got dinner ready so Ken could rest when home from work. He felt much better the next day. This time there was an angel and a miracle.

Some other "little" miracles to me:

• My mom being in town at the right time when we found out about Odette's leukemia and a sister who flew up to help out.
• My garden grew enough stuff to make some salsa even though it was mainly weeds! My peach and apple tree produced fruit this year and didn't break under the weight!
• I have been able to take care of my kids and family with very little amounts of sleep and Ken has also been able to do the same.
• Phone calls from friends and family just when I didn't think I could make it any farther.
• A song comes to mind with an answer of what I need to do to help me feel at peace.
• My kids make it to the bus everyday and are enjoying school.
• We have the money to pay for the bills that are pouring in. Thanks to listening to the prophet and staying out of debt, the blessings of paying tithing and fast offerings and to those of you who felt they could help out this way.

The list could continue on, but I just felt impressed to say that miracles don't have to be angels appearing to us, but come in the form of little children smiling at you and a neighbor making a phone call saying they were thinking about you. Each of us can be a miracle to someone else. Thanks to all of you who are a part of our miraculous life.

Making History

On Monday we left Odette to befriend her nurse and took the kids to the natural history museum at the University of Utah. It was lots of fun, even though it was difficult to not worry about how our little one was doing while we were away. The kids loved the "house" and were very thankful that they don't have to live here!
I think that the frogs exhibit was my very favorite. There are some really weird looking frogs out there! My favorite were the blue ones that were little...probably poisonous, I don't remember!

We had a great time being together and enjoying one another. Brandt even decided that it was okay to smile for mom and her annoying camera! Gotta love the kids when they get bigger and think that they are to old to be in such silly pictures!

The Good, The Bad and The Ugly(or just plain scary!)

The Good:
Odette is eating lots of real food-not just little nibbles, but cups at a time of cream of wheat, jello, mashed potatoes, fruits, veggies and her favorite, ICE CREAM! She is a true member of our family if she'll eat a lot of ice cream!
Ken had a great time bonding with Odette over the weekend. She was so happy and well behaved for him. She must have lost her grumpy bone...or I took it home with me!
Odette's counts are still up high enough so we are able to take her for walks in the hallway. She loves visiting with all the nurses and has made some friends with the other little patients who are also out and about. She is such a social child. When the hospital door opens, if she doesn't go out, she is not a happy camper!
We got to spend some time all as a family this weekend while the nurse watch Odette. It was weird to not have the baby with us, but it was great to be together with Ken and the other kids.

The Bad:
We are still in the hospital for a couple more weeks because Odette still has to endure 4 shots of chemo, a spinal and a day of chemo.

The Ugly(or just plain scary!):
Odette's central line broke off yesterday! They performed a routine patch job and we were just waiting for the glue to dry. I was holding her while Brandt blew bubbles. I felt my hand get wet, looked down and saw blood dripping out onto Odettes clothes and my hand. I quickly pinched the tube while Ken leaped across the room to grab the clamp and Kathleen pushed the nurse button! It was crazy to witness, but all is okay now--or so the nurses and doctor assure us. The first patch was just too little, so it just slipped right off. Of course in mine and Kens head we are thinking-what if that happened at night or while driving home or... I guess that we shouldn't let our minds wander there, but inevitably they do! They did another patch job and so far it is holding, but I am checking it frequently.

The Best Medicine

While at the hospital, Odette is on a continual regiment of all sorts of drugs. It is a guessing game to see what medicine will help her to not feel so yucky. This last week, she has been extremely grumpy and working on how to throw the perfect fit. The doctors assure us that this is normal when someone is taking steroids. However, it is extremely annoying and unlike Odette to behave like an grumpy, irritable baby. She has always been the opposite. This week, comfort was very rarely even found in thumb sucking. After trying drugs of all sorts, I gave up and just would let her lay in the crib and scream or give her to the nurse to see if they had any magic powers that I haven't discovered yet. The change in people and activities calmed her down some, but not by any large amounts.
On Saturday, Ken brought the kids up to visit and trade me places so I could attempt a night at home with the other kids. Usually it is a quick swap out, but this weekend, we discovered that the very best medicine for Odette was to see her siblings. She wasn't grumpy at all. She giggled and talked and played for hours as we rode in the wagon out in the hallway and blew bubbles in the room. She hasn't been this happy for a while. It just was proof to us that happiness can be found anywhere and laughter definitely is great medicine!

CANCER SUCKS!!

I haven't felt much like writing lately. I have had at least 100 things go through my head of what I could write about, but couldn't muster up the desire to do it. This last week has been a very emotional week and from it all, I have boiled it down to one thing--CANCER SUCKS!

While up here at the hospital I have tried to talk to other parents and make a support group for myself. One of my very good friends little boy, just 3 weeks younger than Odette passed away yesterday. I don't know what to do or say. He was the cutest little guy and evidently to good to live through this awful earth life any more. I am sure that his family would agree with me that CANCER SUCKS!

With my family, life has been really challenging for all. School is fun for the kids, but they struggle with not always being able to come home to their own home, snacks, sisters and mom. Not often do they play because who knows where they are. Josselyn is tough and as long as she can play dress up doesn't much care where she is, but she does hate that Odette isn't home to kiss her goodnight. For Ken, thank goodness he is willing to do so much. It isn't an easy job to be a mother, but for him to be a mother and a father is a ton of hard work. There isn't enough time to do it all, but he does awesome at it and the kids were so excited when he got up early enough to make German Pancakes before school--their favorite! I am so grateful that he does do all he does for our family. It is hard for me to be here at the hospital-very lonely and depressing and frustrating. I want so much to cook dinner, read with my kids and of course do math homework! Of course I love that I can have this time with my little, precious daughter. There are days that I feel my life is in such uproar and so fragile. If one thing is overlooked, it is going to shatter and my family is going to fall apart. I know a couple of years is short in the grand scheme of things, but I know all in my family agree--CANCER SUCKS!!

I know that I have a Heavenly Father who loves me and knows me and for some reason thinks we are strong enough to bare this burden. I know we are blessed in ways we never would imagine when we keep the commandments and have faith and trust the Lord. I know that families are forever and I am so glad I have this knowlege. I know prayers are answered through many ways, mainly through other people. Even though I know these things, in the end I also know that CANCER SUCKS!

Beginning Again

Yesterday was the beginning of chemo again for Odette. This round is the same drugs and the same length of time as what we first started at when we found out she had leukemia. She was doing really well yesterday, had even made some of her own platelettes while she had been at home--YEAH!! She was the most patient baby I have ever known. They were running behind at the RTU and didn't get her in until 3pm. She hadn't eaten anything since the night before, and even though she gets it all fed to her through her feeding tube, she still feels the hunger pains. I knew when she w0ke up from the anestesia because I could here her screaming clear down the hallway! Once I got to her and was loving on her, she stopped and slept for the next few hours and looked so angelic. Last night she was given her chemo, one of which is the worst shot ever that goes into the deep tissue of her thigh. Her time scheduled for the shot was 11:30 pm--don't ask why so late--but she wimpered for about 10 seconds and went back to sleep until 6 am this morning, when I awoke to the most beautiful noise in the hospital--Odette's playful talking noises! I am so thankful she is doing well. Yes, we have had puke already, but that is to be expected--besides its just baby puke, so it is a lot easier to deal with than "real people food puke"! Hopefully we will stay on the good track and make it home by the end of the month!!