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

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....