Clinic Day 10/18/10

When we got to clinic today there was 2 wagons full of toys for Livi to pick out something. It was from a family who's daughter had been in treatment 6 years ago. She was 2 when she started treatment and is now a healthy 10 year old! She raises steers every year and then with the money she sells them for she buys toys to take around to all the cancer patients. What an awesome little girl to have such a big heart. It was so cute and it was so good to meet someone who was all done and had a great outcome from chemotherapy!

She chose Hungry Hungry Hippo from her friends with the wagon

Got it all out of the box and already playing with it!

This is her getting her Vincristine through her port, and taking it like a champ!

Cheese!!

This is the one we hate (we hate both of them of course, but this is the one that makes the kids the sickest) Methotrexate....they uped her dosage this time even though they said they werent going to anymore but Dr. Lemons suggested it was for the best. And since he is the best Oncologist at that hospital I'm going to trust him. We're probably going to be in lots of pain tomorrow but he thought it was for the best to cure the Leukemia.

Here is how it is given, over a course of 20 minutes in this machine.

All done and ready to go home!

CLINIC STATS:

Weight: 16.8 KG (she is loosing lots of weight, time to start power packing)

Height: 106

ANC: 3200!!!!

HCT: 29.7

WBC: 6.2

She had an awesome time in clinic today. She got a game, watched a movie, was able to order chicken nuggets to her chair and meet some new friends. This was a clinic day we actually enjoyed. First time I have ever been able to say that....She is such a trooper and since they uped her dosage I am extremely nervous about the days to come. But we are all set with Oxycodone and magic mouth wash and nausea medicine, so hopefully we can keep the side effects under control and wont have to make any special trips up to the hospital this week. Thank you Jessi for watching Ryker for me as always, I really appreciate it with all my heart!

Buy some bows, help with bills!

My sweet friend Lexi wanted to help out Alivia and her family with some of their rising bills, so she decided for this week only (10/18-10/25) 40% of all sales from SugarandSpice1.etsy.com will go to Alivia and her family. She has the cutest bows, crocheted hats, flower bows, etc. Check out her website! Help spread the word! You can check out Sugar and Spice Baby Accessories' blog at

http://www.SugarandSpice4baby.blogspot.com/

48 hours

Wednesday morning Livi woke up with a sore in her mouth and a sore on her bottom. Since the mouth sores are a side effect of the Methotrexate she has been getting up at clinic I didnt think anything else of it. But the bum sore puzzled me so I called clinic. The nurse told me not to worry that it was probably nothing and just to watch it for infection and for a fever. As the day went on Livi just kept keeping more and more irritable and not wanting to do anything or eat at all. Thursday morning she woke up with even more mouth sores and not wanting to eat or drink anything and wanted to do nothing but lay on the couch and yell at everyone....

Thursday night around 6 Livi started getting a little fever, it didnt last long at all in fact I checked it again in an hour and it was 98.6. I kept checking it all night long and it just kept going up and down but never staying consistant for longer than an hour. Friday morning I called clinic and they told me to just bring her in so they could look at her. So off the Primary Childrens we went. When we got up there her primary Doc was there, Dr. Sprayker. They accessed her port and took a CBC and while we were waiting for those results the doctor came in to do an examination. Livi stuck her tongue out for the Dr to look in her mouth and there it was.....THRUSH!! I cant believe I'd missed it! Then they looked at her bottom and said that the sore was actually a fungal infection that was most likely caused from the mouth sores. (When they get mouth sores it is mostly all the way down their throat, through their intestines and sometimes out through their bottoms.) So the mouth sores has caused quite a problem. Dr. Sprayker said they were most likely going to admit her it just depended on what her counts were. She went to go look at them and quickly came back and told us her counts were not good. Her ANC was 400, her white blood count was 2.3 (Low) and her Hct was 25.8 (low). We were being admitted.

We went over and got all hooked up and got some fluids in her (the girl was totally dehydrated) and right then and there she was a different person. We had some awesome visitors that night who brought dinner and yummy treats (Thank you so much Amanda and Chelsea! You guys rock) and we were ready to be there for at least 48 hours. The next morning Dr. Lemons came in and told us her ANC had actually dropped but her white count was going up which was a good thing but he wanted to give her a little extra boost by giving her a shot called a GCSF. It was amazing and did its job! Sunday morning her ANC had jumped up to 1400!! So we got sent home at noon with 5 new persciptions to fill and a happy little girl! Thanks to all those who came up and visited (Thanks Jessi for all the fun stuff to do!) and who held my house together while I was gone. So after a clinic visit, an admission, a fever, an infection, a shot, a breakdown, we are home! WHAT A WEEKEND!!!!

First day of Preschool

I made this book for Livi to take to school with her so her class mates could better understand what was going on. Also to help them to see that we always need to be so careful about germs.

Getting ready to go! Pretty girl :)

Lets get going Mom!

Finally here and already playing with new friends!

Picking our Livi Lou up from her first day

in front of the tree house.

Had an awesome day, HORAY!

Livi Lou started preschool yesterday! I enrolled her in a school called Kids Village. Its this cute little school on 1600 N in Orem. She went there last year and we absolutely loved it. They have been so awesome with following every instruction we have given them. I walked her inside and immediately we saw our friend at the front desk Kathy (the one who made this all possible) we love Kathy! She was so excited to see us and walked us right back to meet her teacher. Her teachers name is Miss Rebecca and she is so excited to have Livi in her class and wants to do all she can to keep her safe, she made me feel so good about everything. They took her picture for the class room, which she loved, then off we went.

Livi was a tiny bit nervous but the giant tree house in the hall way eased that for her I think. She grabbed Rykers hand and off they went to go play. Then it was time to go into the class room. I grabbed her hand and she was squeezing so hard then we went in and she saw the kids playing, looked at me, and ran over. She was so happy because there were a couple of kids that were in her class last year in her class this year. It made me feel better knowing that she

already had a bunch of friends.

Mission accomplished! We are so excited for Livi and are so happy she had fun!

Clinic Day 10/8/10

Happy girl

Port Accessed

Favoring her right side, but happy its over with!

Playing with Grandma Johnson

Clinic was a good experience today, no flu shot, no back poke and no bone marrow aspiration! Just Methotrexate and Vincristine through her port. They used a 1 inch needle in her port today because it has had trouble in the past drawing back with a 3/4 inch. It drew back right away and was nicely done by the nurse. Livi is still having a really hard time with it, she started kicking and hitting but we got her under control long enough to get the bandages on then she calmed down almost instantly. Its not painful for her because I put TONS of emla cream (numbing cream) all over so I know she cant feel it. Its just really scary for her still. They also upped her dosage of the Chemo drugs today. It went from 100 to 150. We saw the effects of that later that night. Just all of a sudden she got very very sick. Throwing up left and right and tired as all could be. Poor girl. I'm not excited to see what the next couple of times hold when they have to up her dose each time. EEKK!

CLINIC STATS:

HEIGHT: 105.5

WEIGHT:19.4 KG

ANC:1400

PLATELETS: 614

HEMATOCRIT:31.6

Moms with Cancer Fighting Cuties

The most awesome group of ladies I know

Just when all started to feel lost and I felt like the world was closing in on me, I became a part of a group. I got an invite on Facebook from a friend we had met up at clinic. (Amanda :)) When I joined the group, it felt like a burden had been lifted off my chest. Like it was going to be easier from now on. I didnt ever want to be a part of a group titled anything that had to do with cancer, but I am, and it has been a blessing. I have a special bond with them and knowing that they are doing the same thing I am everyday is the best therapy anyone could ever offer. They are the most amazing women I have ever met and I am so grateful to have them in my life. The main ways we all communicate, share things and ask for advice is on facebook, blogs, email or group chats. Some of us live hours away, some just a few minutes, but its where we all get together almost everyday and are the best group of people out there!

(I stole this from Chelsea's blog, Thank you!)

I belong to a special group of women

My friends and I have an amazing bond.

We never wanted to be in this group,

Yet we are in, for life.

Maybe we have met, maybe we haven’t,

Yet our love for each other is boundless.

We know the pain the other one feels,

And we share our victories small or huge.

Words like chemo, IV, Zofran , bald heads

Are always parts of our conversations,

As well as roidrage, tears, and meltdowns…

We always know where the closest puke bucket is ,

We can hold it in one hand and if necessary,

Swallow the sandwich the other hand was holding.

We can drive to the hospital ,

Park in the dark parking garage

Make our way thru the halls of the hospital

And to the appropriate floor,

Settle in a room, turn the TV on,

Give instructions to the head nurse,

Silence loud beeping IV pumps,

Direct a wagon AND an IV pole

To the playroom without hitting anything

Make our way back to the correct room

And all this, mind you, With our eyes closed at any given time.

We know how to draw blood from lines

Sticking out of little kids chests.

We can hold them down with one hand ,

While a nasogastric tube is inserted in their little nose,

And be on the phone with their dads at the same time.

We can live for days on hospital food,

And on maybe only one meal a day .

We know the names of up to 20 different drugs ,

Their purpose, dosage and time to be taken.

We are always on call, 24 hours a day ,

Seven days a week.

We are used to not always looking our best,

Hard to do with only a few hours of sleep . M

ake up , hair styling, skirts are words of the past .

We have become addicted to texting ,

hospital, clinic, home, wherever…

We talk sometimes at all hours of the night ,

We know we can count on someone to be up.

Then for one of us , the world stops .

She has to walk away, broken.

This job is over .

The job is over, but the fight is on.

Remember , I said we were in this forever.

We are friends, sisters, temporary nurses,

We are each others rock, each others punching bag,

We listen , we vent , we cry , we laugh together .

We share our lives and our deaths

We share our pain and our victories.

We are strong, but not by choice ,

Sometimes we win , sometimes we lose,

But never are we defeated .

We are not nurses

We are not doctors,

We are cancer moms…

Blog blog

Ok, so its been a while since I actually blog, blogged....I write stuff as often as I can, but I dont actually write anything that comes from me, I just tell everyone what we're doing. Well I woke up this morning tired as heck because I stayed up till one reading my giant binder the hospital gave me. Yes I know, I still havent read through the whole thing, but seriously you should see this thing! Partly I havent read it because I want to ignore it and pretend this isnt real, this isnt me, not my life....I try as hard as I can to live as normal as possible, go to the gas station, go tanning, go to the grocery store, cook dinner....but the truth is, nothing is the same. I have a hole in my heart and in my stomach. I cant ignore it, nothing is the same. Its so hard to have motivation to do anything anymore. I feel like all I do is sit around and do nothing.....so a couple of days ago I decided I need to do my own reasearch on my daughters disease, I need to know whats going on inside her little body. So I ordered a bunch of books from Amazon.com and started reading all the things the hospital gave me and started reading things online. It just makes me very sad when I read all the symptoms of it and realize that she had all of them....the easy bruising, the paleness, the red spots on her neck, (called the dr twice to ask what they were, they kept telling me it was probably just heat rash) the tiredness....I beat myself up everytime I think about it. I just thought she was getting bruises because she was playing so hard with Saige outside, climbing trees and running and falling (shes kindof a clutz....) I just thought we needed to spend more time outside so she could get a little bit of a tan, I could have taken her sooner. I should have taken her sooner. But I cant change anything about what happened. And thank goodness for that ear ache or who knows what would have happened. And thank goodness to Dr Clayton for following his gut and sending her to Utah Valley Hospital. He is an amazing Dr and I recommend him to EVERYONE!!! So now that things are settling down and people are fading away its been hard to get back to just us. At first there were always people at my house wanting to help, its good though, because it cant be like that for the next 2 years, sooner or later we are going to have to face this as a family, just our little family.

I question myself everytime I take Livi anywhere, is this safe? What if someone is sick here? What if someone sneezes on her? What if someone has the chicken pox? I'm just a freak..... Yesterday I took her with me to Target then to Toys R Us to do a little searching for Beauty and the Beast, and everytime we walk inside somewhere I cringe.....then as we walk around and people stare it just makes me even madder and makes me want to punch them in the face....or when little kids stare at her and make her feel bad....ewwwww....Geese I'm crazy....Then when I see moms with their little ones, I just want to take them and shake them and tell them to be so gratful, because you never know what can happen to your babies.

So yesterday it was Rykers turn to go to the doctor. I dont know if you all know Ryker but he has quite the personality, and a voice to match. Instead of talking normal he grawls. Grawls everything he says, its really funny but then when you think about it, its really not normal..... So I took him to the ear, nose and throat dr that did his tubes last year and first he checked on those. They had fallen out and were just sitting there so he grabbed them with these weird looking tiny tweezers. He asked me if I wanted to keep the tubes which I thought was weird, but I said yes so I could show Chase. hehe. Then the throat business began, I had to hold Rykers head down with one hand, arms down with the other hand then wrap my legs around his....when the dr was telling me to do this I was starting to get pretty nervous....he stuck a tube up rykers nose and down his throat and was looking at his vocal cords with a camera at the end of the tube. Ryker didnt even cry, he flinched and whinned a little bit but he did so good! What a brave boy! He said the vocal cords look normal, their is some swelling a reddness around them but he doesnt see anything to worry about. He is just going to be a dinosaur forever, I think he's ok with that though.....He told me to come back in 6 weeks for another check and to put tubes back in his ears. What a day. I took Livi with me to his appointment and I think she really enjoyed not being the one their looking and poking and hurting at for once....

I am so grateful for my kids, everyday I feel like we just get closer and closer. I used to work kind of a lot. I felt like I had a good relationship with my kids but not like the one a stay at home mom would. I miss my job, I miss seeing the people, I miss working with the fun girls, but I am so thankful to be at home with my kids now. I just hope Crest misses me too!....but my babies need me right now.....I dont know if i'll ever go back!!

Clinic Day 9/28/2010

We got our favorite room, She loves this

toy on the wall!

Today we start a new course of treatment. In this course Livi only has to come every 10 days to get Vincristine and Methotraxate. (Two different types of IV chemotherapy) The homecare nurses had to come by our house on monday and access her port and get her counts to make sure they were high enough to get both of them the next day at the hospital. Well I got a call from our insurance saying they wont cover the homecare nurses to do that anymore so now we have to go up to the hospital and get her counts checked, then go back the next day for treatment. But if her counts arent good enough then we dont have to go the second day and they just postpone it for when her counts are up again. Sheeesh!! Lots of driving! Good thing I traded the SUV in for the Honda! :)

Here are her Stats for this week::

Height: 105.5

Weight: 19.4 (about 45 lbs I think.....)

ANC: 2600

Hct: 28.8 (34.0-40.0)

Circus Circus Circus!

Getting ready for the Circus to start!!

The cutest bald kids ever!

Cool cool! Guys dancing on stilts

Looking smashing trying on some circus jackets

Cheese girlies!!

We went to the circus up in Salt lake for Hopekids, its an amazing organization that lets these kids do fun exciting things that they probably wouldn't have been able to or even planned to do. Its so nice to go to something like this planned for you, all you have to do is show up. They get the tickets for you, a place to sit, its awesome. The kids are able to go to certain events and just be normal kids. They have at least one activity a week, sometimes 3 or 4. Its so awesome and we dont make it to Salt Lake very often so its a lot of fun when we do this stuff with them. We have also met a ton of awesome familes that have touched our lives forever. Livi has made lifelong friends and we love you all!

Jessica came with us to this event because Chase had to work late :( but it was lots of fun, thanks Jessica! We got there and it was pooring rain, we ran in the building and right as we got in the doors there was a long table with CR sitting behind it (the only employee for hopekids) handing out tickets, and of course he had a silly hat on, Livi always loves to see what hat he is wearing its so fun for her. Thank you so much hopekids, this was a lot of fun for us.