Best Day in a Long Time?

Maintenance....we have been waiting a long time for this, been through hell and back and just trying to keep our head above water from day to day. It feels good knowing that we're going to start having a little more freedom. But I'm also scared out of my mind not knowing what is in store for us next. In maintenance Livi will only be seeing her oncologist once a month, she will also be getting chemo just once a month....the chemo she has been getting once a week for the last 6 months. This scares me. Why do you ask? Well without that horrible poison keeping the cancer away there is a chance that it will come back. Relapse....this a word I hope I never hear anyone say to me. Im excited for Livi though. Counts will go up, this means hair starts growing back and she will be able to start going to dance and school again! Start playing with her dear friends again!! Im so excited for her. I will not let her know what a nervous wreck I will be though. It also scares me only having her ANC checked once a month.....what if its good one month so I let her go and do.....then when they check it again and its super low!!?? I will feel horrible for exposing her to all the germs! I hope after a while everything will just sort of stick to a good count and we wont have to worry about that.

What is Maintenance??

Maintenance (consists of repeating cycles lasting 12 weeks each, lasting 2 years from the start

of Interim Maintenance for girls and 3 years from the start of Interim Maintenance for boys)

Vinc: IV push/ Once every 4 weeks

Dexamethasone: PO (Orally, twice a day)/ 5 days each month

Methotrexate: PO/ Once a week

6MP: PO/ Days 1-84 (every single day of Maintenance)

Methotrexate: IT (LP)/ Once every 12 weeks

First Maintenance appointment!! Way to go Livi! You did it! 6 Months of horrible horrible courses and you made it so far! We are so proud of you our little angel!!

I <3>

Here is Livi with her pill tray...Yes I actually acquired it from my grandma...haha not really but you would think!!

Here's all the perscriptions Livi got sent home with today. They consist of 6MP which is a chemo pill she will be getting every day for the next 2 years, Dexamethazone....dundundun...yes the lovely steriod yet again....she's only on it for 5 days a month though...feeeww! Then the septra which she will also be on for the next 2 years but only takes it on Mondays and Tuesdays. Then she was put on Acyclovir because the poor thing can not get rid of those stupid mouth sores!! Last but not least Methotrexate, she will be taking 5 of these pills once a week.

Snuggling with her daddy :) Daddy's on the phone....

ATTENTION ATTENTION PLEASE!!! If you will please notice...you probably cant because I have a horrible camera but there is peach fuzz growing on this cute head!! Im sad to see the bald go. Is that weird? I feel like I didnt take enough pictures!!

Steriods :) New favorite is KFC

And corn dogs of course. This girl could eat us out of house and home when she is on steriods, No joke!!

Clinic Stats:

Weight: 18.4

Height: 101.5

ANC:800

Another awesome story, we had Livi's ANC checked 2 weeks after she ended DI. It was 1000! After being 400 throughout the whole course we were really happy. So when I had it checked the day before she started maintenance I didnt think twice about it. Here we are on Tuesday January 24 getting up at 6 am to drive up to clinic. Livi's appointment was at 8 because she had a scheduled LP. We are so excited, in the best mood ever, got up there and before we even get called back in to a room a nurse walks in to the waiting room and sits next to me with a piece of paper: her counts. The first thing she says to me is "Did no one call you yesterday?" with a really queezy look on her face.... Immediately I said "No, but her counts were great last week and she hasnt gotten chemo so I just assumed they were fine." She looked at me with a very symathetic look, "her ANC is only 600 and it has to be 750 to start." AHHHHHH!!! What?? And no one called me??!! Oh man was I mad, but I didnt want to make too big of a scene so I just walked up to make an appointment for the next week......Seriously though? That was crap!!!

Daddy's Surgery :(

This last week Livi's dad had to have surgery on his rotator cuff and his Labium cuff. They were completely torn from the bone, and he also had a piece of his bone floating around that had broken off at one point.....This bone was probably the size of a quarter, it was huge!! The doctor let us keep it which was pretty awesome....... His shoulder is so messed up and has been for a very long time. We havent been able to get it fixed because we didnt have insurance for the last 2 years. Finally we got it done. He is going to feel so much better once it heals. It was horrible not being able to move his arm over his head, or bend down to grab anything or throw a ball with his right hand. It got so bad that one time it popped out of socket in his sleep! It was popping out of socket at least once a week.

When the surgeon got done and came out to get me and tell me he was done he just kept saying what a bad shoulder it was and how he really hopes this will fix it and Chase will regain mobility. They said he probably will never be able to throw a ball again which is sad, he wont be able to teach his son to throw a baseball or a football :( sad day!! I really feel for the guy. But luckily Ryker has lots of uncles who will be more than happy to play catch with him!

Chase is just trying to heal now, he had a block which lasted 24 hours but now that it has worn off and he's feeling it all, he's one sad guy. Its good to have him home though. Hopefully everything will heal well and he'll be able to go back to work soon! 3 months+no working=NO INCOME :((( Looks like mama will be going back to work soon for a while until Chase can....I dont want to, but ya do what you gotta do!!!

A Break From it All!

Livi had a 3 week break from chemo between DI and Maintenance, it felt so good to have life be some-what normal for a little while. Livi's counts were still really low so we couldnt really go anywhere but we played lots of Wii, colored, and lots of games. It was really lots of fun. After the first few days it already seemed as if Livi was back to her old self and I was hoping (and I still am) that it sticks.

About 3 days into her break though she did need a blood transfusion so back up to the hospital we go! She wasnt acting weird or anything, she was just sleeping ALOT. She didnt wake up till almost 11! In normal parent land you just think how awesome it is, and you get that extra time, well in cancer mom land you automatically jump to something is wrong. We got to go to Utah Valley Hospital for her transfusion which was nice that we didnt have to drive clear to salt lake. Man did they spoil her rotten!! She got 2 blankies, 3 new hats, coloring books and crayons, stuft animals....they dont see bald little ones around this hospital very often. Nurses kept coming in to meet her, everyone loved her to pieces! Who wouldnt??

Look at this little boy! He is such an amazing brother. He is always so caring and so loving towards everyone. He was such a good boy for the 5 hours we were at the hospital. Livi is so lucky to have such a wonderful brother and vise-versa.....I have the most amazing kids anyone could ask for!!