Clinic Day 10/28/10

This week at clinic was really jumbled....We got there and started right away doing crafts. We got called back, did her vital signs and everything looked awesome! She started gaining back some of the weight she lost in the beginning of October which was so relieving! FEEHEW! She also has a yeast infection from all the antibiotics they gave her last week, poor girl, but she's doing so good!

Little miss Livi was pretty sneaky this week, you see she had a lumbar puncture scheduled for 1:30 (SOO LATE IN THE DAY!) She isnt allowed to have anything to eat for 6 hours and nothing to drink for 2. Well she snuck a bite of Rykers poptart for breakfast....the girl was starving! Of course I got mad at her because I told her not to eat anything but how mad could I possibly get when she hasnt eaten anything all day.....Poor Liv! We saw the Dr and thats the first thing I told him, he said we cold either wait and have the LP done at 4 or just have it done next time we come either one they said it wasnt a huge deal when she gets the LP. We decided to do it next time and they made her appointment for 8:30, thank goodness! Why they had her scheduled so late in the day I dont understand but they really need to know they cant do that to starving little ones. Especially sneaky ones....

They also upped her dosage of Methotreaxate again to 175 MG! I couldnt believe it, we're making our way up there. She only got 140 last time so that was a huge jump! We're all loaded up on our Zofran (for nausea) and our Oxycodone and magic mouth was, so hopefully we'll be able to keep the side effects under control.

Oh how we love the crafts at clinic!

Livi wanted to make Ryker one too

This is her ghost she made herself.

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Getting her line flushed, she gets more and more interested in what their doing each time we go. She'll ask, "Is this a drink?" or "Is this my medicine?" or "Is that my blood work?"

Vincristine Push

Sitting on Mommy's lap. Normally I wouldnt say anything bad about the nurses we have in clinic, but this time I think our girl was new. She kept pushing Livi's needle in and out and moving it around, so so painful for Liv!! Usually they just have her move her arms around or stand up or something because her line is so positional. By the time I figured out what the heck she was trying to do I quickly let her know that she wasnt doing it right....Holy cow I was so SO mad at this nurse! She really hurt Livi. I mean its still already so hard for her to get her port accessed and now why dont we just freak her out some more about it?? Ok I'm done venting about that...

Clinic Stats:

Weight: 18.0 KG

Height: 105.6

ANC: 1200

HCT: 32.2

Until next time....

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…