I just wanted to blog about what amazing people I have in my life. A few weeks ago I got a message on facebook from my sister in law Hidie. Her cousin and her work wanted to do something wonderful for our family by doing a sub for Santa for Christmas this year. I couldn't believe it! How did these people know that I had done absolutely no Christmas shopping then to top it all off, how am I supposed to go shopping when Livi cant go anywhere this time of year. My hands have been tied for the last few weeks, having to rely on a lot of people doing things for me. I was so overwhelmed and so so beyond grateful! What wonderful people to think of us this time of year! There are some amazing people in this world, I am a witness to that. They came on Sunday and brought by all the wonderful, already wrapped (saved me even more!) presents. They took all that time to shop specifically for my family and they wrapped all the presents for us as well. They also hand made a quilt for each member of out family. Thank you so much!!!! Words can not express how eternally grateful I am for this wonderful gifts you have given our family. You have no idea the joy you have brought to our family this Christmas and we are so grateful!!!

I also want to thank the families at The Kids Village for their generosity this holiday season. Instead of the hug a bear project they normally do at Christmas time, they did a fund raiser for Alivia and her friend Daphnie, who has the same cancer as Livi. It was truly amazing and I was with out words.......for a while. I couldn't believe the generosity and the love all of Livi's school mates and their families have for us! People that barely know us are doing all they can to help us through this difficult time in our lives.

Thank you all so much, you have truly blessed our lives in a way you will never know. We are forever in your debt and are so grateful for all you have done for us. God bless all of you and have a Merry Christmas!!

What a Week

I have no words to describe this past week. Horrible, exhausting, those words could possibly give you an idea of what our family has been going through. Livi is going through so much, we're supposed to be on "count RECOVERY" and this has been by far the most horrible week yet. I unusiated the word recovery because you would think she would be recovering right? Getting just a little better right? WRONG! She is so tired, just stares into space all the time, cries for no reason, lays on the couch all day, I have to force her to get out of her pajamas. It is so heart wrenching to see her like this. No parent should ever go through this. I just have to try and comfort her when she's upset and I have no idea why or try to talk to her when she hasnt said a word to anyone for hours and its so hard.

At first I thought maybe she needed a blood transfusion because of how exhausted and pale she was. So yesterday I called our homecare company to come draw a CBC (complete blood count) and they called me back this morning and said her counts were all good. I was in total shock. So I asked the nurse if there could possibly be something going on and she told me to just watch for fevers, sometimes the body just has to crash for a while after getting so much chemo and going and going constantly. I seriously feel so helpless. I hate feeling like I cant do this anymore. I want my little girl back, I want to have a normal life again. I know that we will never live normal lives again. Even when this is all said and done with it will always be engraved in my mind and I will always ask "where did this bruise come from?" or "why are you so pale?" or wonder if someone has just been picking their nose to make it bleed or if there is a more serious issue.

I'm just venting for now, I'm sorry....This has just been a bad week full of what I call "Why me days".....I hope the next few weeks will pass by quickly and we can quickly get into maitenence and have no problems with that and everything will be smooth sailing for the next 2 years. Thank you so much for everyones love and support over the last few weeks. I dont know what we would do with out you all. We have recieved such an outpoor of amazing love and kindness this holiday season, with out you all I would probably have gone crazy by now! Just know that we are so grateful for every single one of you, we couldnt get through this with out such amazing people in our lives! We are so blessed to know each and everyone of you. Thank you and Merry Christmas!

This is where Livi finds the most happiness....the bath tub, we try to make it as fun as possible for her, we have all kinds of fun bath toys. This is the kids favorite foam...its awesome and they can play with it for hours if I were to let them.

Clinic Day 12/14/2010

On our way to clinic

What a goof! She got some 3D glasses and paper to color on for Christmas from the clinic ladies. It was a big hit! She wouldnt take them off!

Today is the last day for Doxorubicin! We're so ready to be done with this aweful chemo. It has been aweful at our house lately. She get so nausous and then to top it off she is on her steriods again. She's not as mean as she was the first time she was on them, she's much much more emotional. All she does is cry. It breaks my heart! She cries about everything, and poor little Ryker will look at her wrong or say something in his monster voice and it will upset her so much that he then gets upset too! We're all emotional basket cases over here....so if you plan on coming over bring some tissues with you ok?

Clinic was short (which we always enjoy) and we got to visit with a couple of Livi's cancer buddies and meet some new ones. She loves talking with her cancer buddies or meeting other little ones with "akeemia" it makes her feel good knowing she's not the only one going through all this aweful crap...

So as I'm sitting here typing Livi just came and jumped on my lap and said "what are you doing?" I said "Im writing to all of our friends about you and how clinic was last week." Her reply was "Mom tell them I love you and we love you all of you." So there you have it! We love all of

you!!

Meeting a new friend, I think his name was Oliver...very sweet puppy, Livi thought it was hilarious that he had a bow in his hair and it was a boy!

So today instead of the normal nausea medicine they usually give with this chemo, which by the way never helps and it drives me crazy because with this dose your not supposed to have any other nausea medicine for 24 hours, we decided to try and give her the normal Zofran (which she gets at home) and Benedryl....this was the end result....

SHE WAS SO SLEEPY! She was sound asleep through half of her clinic visit then the entire ride home! What a sweet heart. I dont know if we'll throw the Benedryl in there anymore but it seriously helped with our throwing up problem!!

The Kids Village

Alivia started going to preschool in October. She has only been able to attend a handful of times, she misses week after week because of some sort of complication or she's in the hospital, or at home on antibiotics or her ANC is too low or just any old reason. I hate seeing her missing out on so much. She missed out on her school program for Halloween, her Thanksgiving class party, and many many fun days being with her friends. So I got notice that her Christmas party was coming up and it broke my heart that it was going to lie right in the middle of her DI course. There was no way she was going to be able to make it. We went to clinic on tuesday for her second dose of the Doxorubicin or the "Devils Blood" and the time she had gotten it the week before she had been horribly sick every single day and her counts were only 1200, I was expecting them to be low, too low for a Christmas party. Low and behold they read me her counts and....drum roll......they were 4700!!! Amazing!! I was so unbelievably greatful that I was going to be able to take her to the party!! (That is if we could avoid the vomiting, leg pains, and horrible headaches.....another story) I tried not to get too excited because with a child with cancer, you can make no promises, no commitments, and cant count on doing anything you plan for. The cancer controls your life, your not allowed to make plans we have learned that time and time again.

Wednesday rolled around and Livi was doing pretty good. She threw up once in the morning, but overall was acting like she felt ok. I put her in the car at 330 to head over to the Kids Village preschool and crossed my fingers.....Everything was perfect. There wasnt too many people, Livi got to meet santa, sing a few songs, and get to see some class mates she hadnt seen for quite sometime. Needless to say we had a great time. Our other cancer buddy Daphnie also goes to this school and they were the highlight of the party. Everyone wanted to meet them, and shake their hands they also got to sit at the top of the little stairs so they were the center of attention. They were little celeberties that night.

Clinic Day 12/7/2010

This week has been a rough one :( Livi has been sick sick sick, it would just creep up on her at anytime, anywhere. Luckily we didnt do much this week so we generally stayed at home. All in all though she is doing really good. No mouth sores, that we can be thankful for! This week at clinic she got Vincristine and Dox0rubicin. It was a very short clinic visit! We were only there for 3 hours today (yes that is a very short visit, normally its 5-7 hours) Livi was crying when we were leaving because she wanted steak so bad....steriods man gotta love them! But she does get a week off from them now. So maybe she'll be getting back to normal soon......

Clinic Stats:

Weight: 17.8 Kg (about 39 lbs)

Height: 106.4 cm

ANC: 4700

We're so happy Livi's ANC is up, it might be a little too high but nothing they are worried about.

It just means that she will be able to go to her school Christmas party tomorrow, which she has been looking forward too all month! She hasnt been to school in weeks, she misses it so much and it breaks my heart when almost everyday she asks if she can go. Im a little torn in what to do. Her ANC is up but at the same time should I risk letting her go during flu season? She's bound to get sick if she goes, but whos to say she wouldnt get sick anyways?? Ehhh...The stress of my life....

We are so lucky to live in such a awesome neighborhood, my ward has been bringing us dinner every night we have clinic which is huge for me! After a long day and a long drive home, the last thing I want to do is cook dinner. So thank you so much ladies you have absolutely no idea how wonderful this has been for me!

Livi also had her appointment on Friday to get her PEG shots. The nurses said she did really well. I would have to disagree. She was throwing her body all over the place, arms, legs, basically any part of her body she could move, she was moving. It was horrible for me. Then we just had to stick around for an hour so they could watch her for a allergic reaction. She fell asleep, it was so quiet in clinic! There was probably 2 other kids there today.

Livi got this shirt from her friend staying in the ICS, you cant really see what it says because its giant, but is so cute it says "hair is overrated" Love it!

The awesome surfer santa from the Festival of Trees was in the lobby at Primarys, I think Liv was a little nervous around it, but it was seriously awesome.

She also got this cute bear from her little friend! Thank you Kambri!

Clinic Day 11/30/2010--DI course begins....

Alivia finally made counts! We had her home health nurse come check her counts on Monday, they were still just at 700, but her doc wanted to get started on this course. They normally like their counts to be at 750 when they get chemo but since it was just the beginning they were going to let it slide. So we got to clinic and they did a CBC and her ANC went up to 1200 that night....what a silly kid. ANC's can fluctuate thousands in days, its definitely very temperamental.....

We started the "scary" course today called Delayed Intensification. Its supposed to be one of the most awful ones....needless to say I am a little freaked out for what this will bring to us and what our Christmas will be like this year, but honestly I'm so excited that we're so close to maintainence! Its definitely a love/HATE thing.....and I really do mean HATE!!!!!

Here's our plan for the next 59 days:

Delayed Intensification

Vinc: IV push/ Days 1, 8, 15

Dexamethasone: PO (Orally, twice a day)/ Days 1-7 & 15-21

Doxorubicin: IV push/ Days 1, 8, 15

PEG: Shot/ Day 4,5 or 6

Cyclophosphamide: IV over 60 mins/ Day 29

Cytarabine: IV push/ Days 29-32 & 36-39

Thioguanine: Orally/ Days 29-42

Methotrexate: IT (LP)/ Days 1 & 29

Its so much to take in, but this is what she will undergo for the next little while, she's had the PEG shots before and it was horrible, I had to leave the room she was screaming and flipping out so hard. As you can see Livi Lou gets to start steriods again too! Oh no.....the meanness, the appetite, the yelling......Hopefully she will start gaining some weight if her appetite does pick up. She is getting the Methotrexate (we hate! She gets mouth sores every time!) Luckily its not given in a large dose and its just given in her spine. So possibly the side effects wont be as severe?? Livi is prone to mouth sores and the Dox is one of those chemo's that you could possibly get them. We're always in that "possibly" category I swear, I dont want to end up in the hospital over Christmas, so everyone say your prayers we steer clear of those awful things!

My family was here for Thanksgiving this year, and my cousin Aubry was able to come to clinic with us this time. It was so awesome to have her be there!

This is Dr Holly Sprayker, Livi's main doc, she is the greatest! She's so funny and down to earth, and gets right to the point! We love her!

We now play hospital everytime we come, Livi loves playing doctor...and it is really amazing on all the stuff she picks up on. These kids are smart! She know exactly how to clean and access her port, remove the port and she even gives her doll a bandaid. What a good little doctor.

The Child Life Specialist (Rochelle, whom we absolutely adore) showed Livi what her port looked like today, we saw it in the very beginning before it was placed but even I couldnt really remember what it looked like. This is what is underneith her skin, the off-white part in the middle is where they stick the needle to get blood draws, give her fluids or her medicine. Its so much nicer than being poked all the time! The line goes up and sometimes when she is yelling or crying you can see the line sticking up! Little creepy, but hey we love it!

Putting her dolls port in, we had to explain to Liv that her port wasnt put in with scissors, she was very concerned that this is the way we were doing her dolls.

Crafty lady! She made a girl snowman today

Today is day 1 of DI and she has to get Methotrexate injected into her spine, so they have to perform a Lumbar Puncture. This is the "sleepy doctors" as Livi calls them. She gets to take a little nap, its only about a 10 minute procedure. She usually does really well with it all.

Her milky drink to make her go to sleep

Goodnight Princess!

This is in the recovery room, she usually takes FOREVER to wake up! She is one tired little girl. Especially when I have to drag her out of bed at 6am and hall her up to Salt Lake!

Shes trying to wake up

Good morning! The poor girl was starving and all she wanted was chocolate ice cream, she ate that entire thing in 5 minutes, no joke!

Cheese!

On our way home. Im extremely scared to see what this week has in store for us, the ups the downs, the highs the lows, hopefully it wont be too bad and Livi will be able to enjoy the Christmas season.

Well we have been home for almost a week now on IV antibiotics. It wasnt as bad as it was in the beginning thats for sure. I think because in the beginning I was so overwhelmed and my brain was moosh and oh I dont know I was completely exhausted....just a few things that made it super hard. But she has been doing awesome. She is starting to get back to her normal self with no chemo now for 2 weeks. Oh how I've missed her histarical laugh and her jumping and dancing around the house. We've really caught a glimpse of our old Livi in spite of her being accessed and always trying to be so careful with her at home. She's also got her appetite back! She's been eating pizza and pancakes (quite the combo) like crazy!

We were supposed to go to clinic today for an LP and start the new course in Alivia's treatment called Delayed Intensification (DI) but we had to delay her chemo for a week because her counts have dropped and arent good enough to get it. Which has me just a little worried because her counts have never gone below 1000 and the nurse called yesterday and said her ANC was down to 600. So WEIRD! I dont understand how these little bodies work. When she was discharged from the hospital her counts were 2100, she hasnt gotten chemo (usually knocks counts down) and she has been on Zosyn which is an extremely strong antibiotic. This whole thing baffles me, which is why I will never be a doctor.....the human body is so strange....

The home care nurse had to come to our house on Monday to de-access then re-access Livi's port. Your not supposed to have the same needle in for longer than 7 days at a time while its being used. I thought she would do really well with it because we were home. Boy oh boy was I wrong. This was the worst port access by far. She was balling histarically and kicking a screaming like she never has! The nurse explained to me that its probably because she thinks of her home as her safe place, where as when we go to the hospital she's expecting to get pokes and things like that. I wanted to cry with her it was awful. Here's a couple of pictures to let you have a sneak peak into how awful this really has been for her.

We're explaing what the nurse is going to do

Getting ready for it

This picture breaks my heart. This really shows just a glimpse of what its like for her when she gets accessed

All done, watching her blood come out, which is actually weirdly enough, her favorite part.

ALL DONE! Very happy to because she got some awesome stickers

She gets de-accessed on Thanksgiving and is all done with antibiotics. Then we go again to clinic if counts are good enough on Tuesday, so we get one more week of our Livi Lou Lou!

Congratulations!

One of Alivia's little cancer buddies, Brinley just got her very last round of chemo! CONGRATULATIONS!! We are so happy for their family, it seriously brings tears to my eyes because Im so overwhelmed with joy for them and just knowing that there is a light at the end of the tunnel and we wont be doing this forever. There is also video of her last clinic visit and be prepared you will need tissues! WAY TO GO BRINLEY! YOU ARE SO AMAZING!!

Brinley's blog : www.sweetbrinley.com

Ehh Not Again!

Well with Livi going to the ER on saturday I watched her like a hawk....and Livi's fever continued into Sunday. I once again called the Oncologist and they told me to just monitor it throughout the night and call back in the morning. I was so scared. By this point Alivia looked horrible. Not only was she loosing a ton of weight, but she was pale and had big black circles under her eyes and just looking at her I wanted to cry, she was in so much pain! Why did they send me home with this little girl with nothing more than a single dose of antibiotic!!? This was ripping my guts out seeing her like this. I stayed on top of her oxycodone like crazy, but it just wasnt cutting it. It would take the edge off for a whild but she was still hurting. I was so overwhelmed at this point.....couldnt they not see that she needed more help than I as her mother could give her?? I tried everything though, I let her put oragel in her mouth where ever she wanted and as often as she wanted too. Probably not the best thing for the sores but it helped her for a little while so we kept using it.

BOOO MOUTH SORES!!

This is where she was all weekend...on the couch :(

Then I called the clinic on Monday morning to tell them what was going on with her. Mouth sores, fever, bum sores, not eating or drinking at all, in horrible pain.....they wanted to see her right away. I love the clinic people. I would seriously rather wait to discuss all my problems that I have when their not open than go to the ER again I think.....We got there about noon and the waiting started....we were there for almost 2 hours before we saw a doc and when we did they wanted to admit her right away. She clearly needed the hospitals care. So we made the walk down to the ICS and started our week. We were very happy to see some familiar faces though. Our neighbor was Livi's cancer buddy Skyler. They were so cute coloring pictures for eachother and waving through windows, it was so cute!

They said she had developed something called Mucusitus, its a fungal infection and is actually quite frequent. This is usually a side effect of the Chemo drug she was getting called Methotrexate (thank goodness we're done with this one!) and what chemo is supposed to do is kill the fast growing cells, the hair folicals, and the cells in the mouth. Well what happens is sometimes when the cells die in the mouth sores delelope and the bodys natural way of healing its self is the white cells form mucus or puss. And what mucusitus is its just a whole lot of sores and a whole lot of mucus.....In a nut shell....thats what she has...... They started her right away on Zosyn, (antibiotic) and Asyclovir (antifungal) and morphine for the pain. She also was started on fluids which picked her mood right up. I swear all you need to make you feel better is water.....but if you cant get your child to drink water, get it through a line and there you go!

We ended up staying 2 nights and 2 days and Livi is doing much better. Her mouth sores are still there but they are now managable by just oral pain meds. They look really yucky but she is doing very well for the time being. No fevers for the last 24 hours and hopefully the rest of our break goes smoothly. So much for 16 days off! We had to come back a week later and now we'll have to come back a week from today. BUMMER....but oh well small price to pay when I get to take home a happier baby girl! They are sending her home accessed (line hanging out of her port) for me to give her IV antibiotics at home for the next 8 days also, man how I hate doing this! It scares the blazes out of me, Im not in any way licenced to do such a thing! Wish us luck.

ER on a Saturday night :)

Livi got Chemo on Monday and from then on just wasnt feeling well at all, she went to school on tuesday but her teacher said she was acting very tired all day, I put her in the car and she slept untill about 5 that day. Then just day by day she just kept on getting more tired and started developing mouth sores. (always happens to us!) Poor girl :( so I was having to use oxycodone more and more. Friday she woke up and her mouth sores were horrible, just aweful, she also had sores on her bum which leads me to think she has the same thing she did last time she was admitted; when the sores go down the throat, through the intestines and out.....She of course didnt want to eat or drink anything except apple juice (what a help that is...) and I would just add a packet of Duocal to it. (adds 300 calories and 5 grams of protien) But that wasnt enough! I knew she was probably totally dehydrated.

Saturday she started to develope a fever. Just a low grade one, but I kept my eyes on it. By about 4:30 it started getting higher, it was 100.4 so I called the Oncologist on-call. She told me I should probably just bring her up to the hospital so they could look at her because if she has an infection she needs antibiotic.

When we got there Livi's fever was 101.5 so they gave her some tylenol and started a CBC. They also started her on IV antibiotics right away just in case.....when they got her counts back they were good, her ANC was 1400 so they just sent us home and said to just try to stay on top of her medicine as much as possible and do a follow up the next day.

Pamper yourself for a great cause!

Clinic Day 11/8/2010

Pretty girl all ready for clinic today! It was just me and Liv going up today, my sis usually goes with us but Livi's appointment was so early that I didnt want to wake Ryker boy up to take him to a babysitters so she just stayed at my house with him. It took us 2 HOURS to get up to clinic, traffic was HORRIBLE! It was raining and people were just driving EXTRA slow to be safe which I totally get but seriously people!! haha well we got there fine, just extremely late for her appointment....SORRY!

Look at this awesome toy! Livi loves to look at things while she gets her port in, it helps her focus on something else, toys like this, or books or a movie sometimes help.....SOMETIMES, she still has an extremely hard time with her port but she now realizes that its just something she has to do for the time being....

VINCRISTINE PUSH

Eating lunch because we were at clinic for so long they let her order some ramen....

Today was such a long day. She also had a lumbar puncture to get Methotrexate injected into her spinal fluid, she got Vincristine and Methotrexate, she got ramen, she also had a long nap. She did so good for her LP though, she usually wakes up extremely grouchy and wanting to get the heck out of there but it did take her about 45 minutes to wake up from it, she was so exhausted from waking up so early and hopefully the extra sleep altered her mood a litte, when she woke up she was a very happy camper!

This was the last day for this course until we start the dreaded DI....I'm so scared and so overwhelmed thinking about it. I hope it isnt as bad as I hear....but I'm preparing for the worst. Its also going to be over Christmas which will be a HUGE bummer for us! She is taking all of this very well though and I love her so SO much! She is such a trooper and we're rooting for her!!

Everyone Hail to the Pumpkin Song

Ryker playing in the leaves, he was actually 2 things this year, Bumble Bee and Buzz Lightyear

Our little family in front of Grandma Cooper's Clown Mobile...

Sleeping Beauty(Kynzie) Bell(Livi) Buzz Lightyear(Ryker) Ninja/Vampire(Jarrett)

Trick Or Treating at Grandma and Grandpa-Greats house

The boys going "Treatin"

We are big Halloween people. We went all out this year. Mostly because I think our kids LOVED that we dressed up with them. Chase was a scary clown guy, and I was Raggedy Ann (Livi called me her "Dolly" all night long) it was really fun for us. This year Halloween was a day full of fun activities and lots of candy! First off we went to Grandma and Grandpa Cooper's house to go trick or treating on Spanish Fork main street. We had lots of fun but there were SO many people! It made me really really nervous so we left pretty quick. Livi's ANC has been pretty good lately, but why should we chance it with thousands of germy people all around us? Then we went to our wards trunk or treat which was a blast, there were so many awesome costumes! They had a contest and I wish we would have stayed after to see who won because that would have been interesting. After we got home from that it was POORING rain....like BIG fat rain! It soaked us from the time we got out of the car to the front door of our house....we had to decide then what we were going to do if the rain didnt quit.

We headed then over to Grandma and Grandpa Johnson's for chowder in bread bowls (new awesome, delicious tradition) and waited for it to stop raining long enough to get the kids out to a couple of houses trick or treating the old fashioned way. We set off for Grandma and Grandpa great's house to trick or treat their neighborhood (our ward growing up) which was so fun we got to see lots of faces we havent seen in a long time!

We got home about 930 and the kids were pooped. We skipped baths and watched Halloween Town on the disney channel (very scary for the kids...) and fell asleep. It was such a fun day and the kids got tons and tons of candy which I actually let Livi (and Ryker..shhhhh) eat whenever she wants because she wont ever eat anything anymore! (Horrible of me I know haha) It was a very fun day though. HAPPY HALLOWEEN