Hollywood Connection with HopeKids

Jenni joined an organization called HopeKids. [HopeKids provides ongoing events & activities and a powerful, unique support community for children with cancer and other life-threatening medical conditions. We surround these remarkable children and their families with the message that hope can be a powerful medicine.]

They had a day at Hollywood Connection where the kids that are part of this organization got to go up with their families and have the place to themselves. Jenni invited us to come and all the kids had such a blast! Thank you Jenni for inviting us! This is such a wonderful organization! I couldn't believe what they did for these kids. It's amazing. I love HopeKids! And will forever be a supporter of this group. Go to their website and read about this organization if you would like to. They are amazing!

Jenni with her babes on the carousel

grandma Michaelle with my kids

haha! These bumper cars were a BLAST!

GO Livi!!

we loved them!

awww.. the cute cousins ♥

strike a pose Ryker! haha.

Afterwards, we went to Chili's for lunch.. and right now they are doing their "Create a pepper" to fight Childhood Cancer where all the donations they raise are going to St Jude's Children's Research Hospital in hopes of finding a cause and cure for Childhood Cancer. And on September 27th 100% of their profits will go to this cause. So, make sure to visit your local Chili's that day!

(click on the picture to learn more about Chili's/St Jude's donations)

What a great day!

Alivia's journey so far...

I made a quick video of Alivia's journey so far with everything that she's been through. I posted it at the bottom of the page :) It's a really great video and shows a lot of memories we've had with our special Livi and a lot of the memories being made now..

Clinic Day

Outside the hospital by the fountain

The Nemo fish tank outside the elevators

Today we had our routine clinic visit up at Primary Childrens. Right when we walked in the door Livi saw her little friend Amelia, she has the same type of cancer Livi does and they are the same age and they are both so cute! Livi always talks about her and whenever we have to do anything (port access, shaving of the head...) she asks if Amelia has to do it too. Its the cutest thing ever since they have only actually met twice, but we look at Amelia's blog page a lot too so thats probably where she knows her from.

So today Alivia's counts weren't too bad, but they were a LOT better last week....

ANC-1800 the cells that fight off infection, they were 7600 last week :(

HCT- 29 (Hermatacrit)

PLTS- 732 (platelets)

WBC- 4.7 (white blood cells)

When we first walk in, they get her height and weight and her vital signs, I need to start keeping track so....

HEIGHT: 106.0

WEIGHT: 19.2 KG

Then her blood pressure was:

110/66

Then we go back into her room where we wait for a minute until the nurse comes in and then they access her port.....oh my gosh, I keep thinking its going to get easier but its not, its only getting worse and this time she kept kicking the poor nurse. Luckily Aunt Jessica was with us so I held her hands down while Jessica held her legs. Its so terrible! Then the Child Life Specialist comes in to talk to her and asks her if she wants any games or books or toys. The Child Life people are so awesome, their job from what I gather is to just make the kids happy and they just want them to have fun! What a fun job! I feel like I can really ask them anything about her behavior or how to handle certain things, they are all just really amazing people.

Then this week we had a Lumbar Puncture and we tried something a little different for the sedation. We usually go downstairs to the RTU (rapid treatment unit) but we thought we would give this other type a try. I cant decide if I liked it, she was basically awake the whole time, they gave her some anesthesia to make her sleepy like at the dentist but her eyes were still open, (rolling around, teary, sleepy) and I was able to be in the room for the whole procedure. I'm not sure I liked watching that.....little freaky....that needle is probably 3 inches long!!!! AAHHHHHH!! Yeah I dont think we'll be doing that again......But other than that it was a really good clinic visit!

Childhood Cancer Awareness Month

(I found this on another fighting family's blog and felt I needed to share it with all of you.. thanks for the post!)

September is Childhood Cancer awareness month...

Gold is the color of Childhood Cancer. Wear it proudly.
I am still learning all I can about childhood cancer, please do the same.
We learned the hard way that this can happen to ANY child at ANY time, lets do all we can to help find the cause and cure!

You can visit these sites for info and to donate-

curechildhoodcancer.ning.com
http://www.curesearch.org/
www.stjude.org
http://www.goldthenewpink.net/
http://www.alexslemonade.org/
http://www.cookiesforkidscancer.org/
http://www.curechildhoodcancer.ning.com/
http://www.stbaldricks.org/
http://www.gladtogive.com/
http://www.crochetforcancer.blogspot.com/

The Bald and the Beautiful..

So..... we cut Livi's hair today. It was so fun! And Jarrett was the perfect friend to do it with! He made it so fun and exciting for her. THANK you Jarrett for being you and always making everyone feel so special and loved! Alivia loves her hair cut and looked in the mirror right after and smiled. :) I think it was harder for the adults than it was for the kids.. Gosh I love that little girl SO MUCH! what a beauty!

before the hair cuts.. they were so excited!

the twins..

Something was pretty funny I guess...

starting Livi's hair cut..

Oh! What a CUTIE!

she wasn't so sure but was loving it all at the same time..

almost done!

..aaaaaand... She's GORGEOUS!

the cutest bald cousins ever!

Trip to the ER

Well we have now had to make 3 trips up to Primary Childrens this week (good thing I traded in the SUV for the honda.....) The first one was for an extremely high fever-101.9-fevers are very bad and they usually indicate a sign of infection somewhere. But we got to the hospital; which is 45 minutes away and the fever is gone, of course!! They still ran all kinds of tests so they had to access her port when we got there (STILL A NIGHTMARE!) to get her blood cultures. They also did a urine sample and found white blood cells in it.....? They thought it meant a bladder infection so they sent me home with a prescription.

Then in clinic on Thursday they told me that they let the urine sit for a while and if bacteria grows then it is in fact a bladder infection but there wasnt any with hers, so what is it? They didnt know they tested her blood yet again and found no sign of any infection. So again we go home.

Saturday rolls around and Livi just isnt herself, whinney, tired, and didnt want anything to eat or drink AT ALL, and complaining that her tummy hurt really bad. So I called the Oncologist on-call and they told me to take her in to the hospital AGAIN....when the clinic is closed they just tell you to go to the ER and they will handle everything the same there..... Well after a long 7 hour wait of sitting and waiting, and the nurse having to access her port 2 different times because she used the wrong sized needle, (GOING TO KILL HER) they did another urine test, a CT Scan, and more blood work they decide she has appendicitis!! I started LAUGHING at this doctor, there is no way after all we have been through with the cancer that someone decided to throw that in too!! I thought the mastioditus was enough! But after they admitted us to the 4th floor (at 4 am) where we were at the beginning, they quickly ruled that out, it turns out the girl just had a really bad case of constipation.....who would have thought? So they gave her some laxatives and sent us on our way! So today she is acting totally fine playing and running around and no more belly pain and no more fever! All is well thank goodness!!

Hats Off Party!!

Look at all those fun hats!

Cheese mom!

She doesnt look very happy right here, but these

ones are actually her favorites!!

Pretty eyed girl....

Hat from Grandma Johnson

Hat from Aunt Jessi! Look at that huge GRIN!

Lovin the cowboy hat....

This was a very special day for us, it was to make this darling little girl feel good about loosing her hair. So many people came and she got so many cute hats and headbands! She loved every single one and wont need hats till she goes to college! The party was thrown by my mom, Darsi, Jessica and Jessi. Thank you guys so much for all you did and it was an awesome turn out! Luckily Livi was off her steriods so she was starting to become a little bit more friendly and talkative with some people. She had an awesome time playing with cousins and friends that she hadnt seen in a while, it was great seeing her wanting to run around and play games. Thank you to everyone that came and supported our little angel!