We say goodbye to Great Grandpa Joe tomorrow morning. Mommy and I are very sad that we couldn't go with Daddy back to Neola, but we sent our love and lots of kisses. Great Grandpa Joe was 97 and had a very long, successful life, but I will miss him terribly. Daddy says he's headed up to Heaven to clear up some things about when I'm coming...year 3006 is is the date we have marked down.

In the mean time, mommy had some help this week. Brenda Matsen and Jen Curtis came down to visit and help Mommy take a break. (she gets a little high strung sometimes you know...)And boy did we have fun! I finally made it out of isolation!! That means I can actually leave my room at the hospital and when I get out on Saturday we can head back to Target house finally. My first chemo drug is done, but it will take 2 days to clear from my system. In the mean time, I pee pee A LOT. This is good for me, but the diaper changes really interrupt my play time. I have been a chatty cathy as well. Mommy says I look like my dad but sound like my mom. Jen also taught me how to wave...course the best time to do this is at 10:30 pm when the rest of the floor is sleeping. That means when I scream and giggle in delight that everyone will be able to hear me and boy that makes me happy. I'm sad that Brenda & Jen are leaving tomorrow, but happy that daddy will be back on Saturday and then Aunt Nikki comes sometime next week!! Next week won't be as fun, cause that's when I start to feel icky, but at least I'll be able to cuddle up with my Auntie!




Love you all....
Avery

(and yes it is 11:48 pm and my child is up and screaming with delight)

Fun Weekend for Avery

We had a great weekend out and about in Memphis! On Friday we went to the popular Marlowe's BBQ joint down by Graceland. It was fantastic eating and Jeremy is so jealous. Avery really enjoyed the brisket baked potato her and I shared...and they told us to send her picture in to put on the tables. They post pictures on the tables of people and thought she was just the cutest. On Saturday we headed up the street to check out the famous Beale Street action. The Memphis Grizzlies had a game that night so they had live music and the street closed off. There were a ton of people out and about, so lots of people watching. We ate a fried hamburger at a joint called Dyers. This is a place we had seen on the food network and they are known for their incredibly unhealthy, but really good fried burgers. They are also the place that will deep fat fry just about anything you bring in!

Today, we were on our own....so we decided to head over to the park by the zoo and take a walk. They had a nice dog park and playground area and lots of walking trails. I can tell we'll be heading over there a lot when the weather gets nicer. As for today, we were lucky as it was 67 degrees out! Although Memphis is further south than KC, IA, or MN -- it usually averages in the mid 50's this time of year...67 was way above average, so don't get entirely jealous yet. Tomorrow the high is supposed to be 42.



On Saturday in Kansas City, they held the Poker Tournament at Will Jenny's (my favorite place to eat) and it was a fantastic time. Jeremy was able to attend and he really enjoyed seeing everyone that came out to play and watch. It was so great to hear about all the support and I am looking forward to seeing pictures. Thank you so much everyone! Ryan Lawn & Tree and Paychex are amazing companies to work for and we are truly lucky to be a part of their teams. Jeremy and I are once again amazed at how supportive everyone has been and we are so blessed to be part of such a great community in Kansas City. Thank you all so much...

Avery will start her second round of Chemo on Tuesday night. We will go inpatient on Tuesday evening and be admitted until Saturday afternoon, provided everything goes smoothly. Last time her body did really great with the methotrexate drug, so we are hoping for more of the same. Let's keep our fingers crossed that she doesn't pick up any random problems this time!!

Love,
Jenn

Texas Hold 'Em Tournament and Silent Auction Reminder

Hi there everyone! Just wanted to stop by quickly and remind you that this Saturday is the Texas Hold 'Em tournament and silent auction to benefit the Avery Christiansen Fund. The benefit in Neola last weekend was an amazing event and we are excited for more of the same this weekend! Just knowing that there are so many people out there loving and praying for them is an amazing comfort to Jeremy and Jenn.
The spots for the tournament have filled up already, but even if you haven't signed up to play, please stop by and take a look at the silent auction items, (there will be a lot of great things to bid on!) and also to see Jeremy. He has been back in KC since last weekend and I know he is very much looking forward to seeing everyone.
This event is taking place at from 12 to 4 on Saturday at Will Jenny's on 135th street in Overland Park. If you bid on and win an item in the silent auction, but cannot stay until 4, you will be able to stop by the PayChex office in Overland Park to pay for and pick up your item at a later date.
Hope to see many of you on Saturday!

Nikki

Great Day!

Today was a great day for Avery. Her counts were at 3300 and she must have been feeling wonderful because she was happy as a lark all day. She worked really hard in therapy today and spent a good portion of the day attempting to get into things she shouldn't! She even got a real bath for the first time in almost 2 weeks.

We've discovered that she absolutely loves grilled cheese (Megan Rank...she might be your twin) and will eat it at every meal if we let her. She wants to get her hands on the computer more than anything, but mostly when we are using Skype to talk to Aunt Nikki & Harper or Daddy. The nurses finally told me tonight that they can hear her giggling on the other side of the hospital wing and it just cracks them all up. (keep in mind we've been in Memphis for almost a month and she's spent 3 of those weeks in the hospital) And yes, she was wide awake at 10 pm giggling as loud as possible. She loves peekaboo and the 'mommy eats my feet' game. Those just get her rolling.

The plan is that she'll finish her antibiotics tomorrow(thurs)and be discharged in the evening. We are still on Isolation so they will let us leave the hospital but will put us in an isolation room in the Grizzly House on campus or in an isolation unit at the Target House. Basically they don't want us to get the other immunodeficient kiddos sick. I can take her to Target though and let all the "normal people" get it all the want!! HA -- just kidding...she's not contagious per say. Hopefully we'll get a few days out before we come back in on Sunday to start round two -- yes, it's been 28 days and we are now ready to start the cycle over. Day 1-4 are inpatient chemo and day 8-12 are inpatient chemo. The rest is out patient but after day 15 is when her counts drop again and the risk for infection increases. (that is what happened this time and why we are in the hospital and have been for 11 days) Avery did well with the Chemo part, it's the other random stuff that has gotten her -- the stomach bug, the UTI, the C Diff, the andovirus, the line infection. Cross your fingers this round goes a little smoother for her!

She is finally losing her hair...I cried when I saw the little strands on her pillow. Not sure why, she's been practically bald the last 12 months so it won't really be a big change for us. For some reason seeing that seemed to solidify for me what we are actually doing. Some days it feels like we are simply on some random new adventure where she isn't feeling so hot....and then other days the reality hits me and I am forced to deal with the fact that my daughter has cancer and that our lives will never be the same. Yesterday was one of those days. I'm ok with new and unknown....change is a challenge for me, but my bald daughter is losing the little bit of hair she has and I just lose it. Go figure. I just keep telling myself (and Jeremy) that I have complete justification for my collection of hats, bows and headbands that I have spent a small fortune on. And now for my new hobby, hat knitting.

I also keep thinking when we get back to KC and she goes back to daycare, Riley is going to be so ticked at how many new hats and headbands Avery has on her head everyday! (Riley is 4 and hates all hair accessories and no matter what I put on Avery each day, she would promptly remove it each morning and roll her eyes at me. God it made me laugh. Poor Jeanne would put it back on every afternoon before I arrived to pick Avery up.) This really makes me giggle....

Cross your fingers all goes as planned tomorrow! I could really use a night in a bed...

Jenn

Happy Fat Tuesday!!

St Judes had a parade today...I couldn't go outside my room to watch, but I could see all the kids and their masks from my window and boy it was fun! I even got some beads....no I didn't show any skin for them either!!


Mommy learned how to knit hats and this is the first one she made...I don't have the heart to tell her it's not long enough to cover my ears...boy she sure tried hard on it. Nana and GJ are here this week and Nana cracks me up. She likes to duck down behind things and pop up -- man I think that is just a riot!

Gotta get back to eating my Grits and playing with my beads....love you all!

Avery

Counts went up....Daddy went home

Jeremy left yesterday morning to head back to KC for work. It was tough for him to leave and he called multiple times while driving to check in on her. His trip is about 8 hrs and it was a long one. Cy was so excited to see him when he got back though and of course Jeremy let him sleep in the house with him. All of our Kiddos are going to be so spoiled!

Avery's counts went up today! We are so excited they finally left the bottom and are at 300 today. Still too low to not be at risk of course, but at least they are moving up now! Her C Diff and Blood Infection are doing fine. The antibiotics will continue until Thursday and then hopefully we'll be cleared for discharge. Nana and GJ came down from MN yesterday and will be here all week to help out. Since she is in the hospital until Thursday this will be a big help -- hard to shower when she can't come with me! Nana arrived just in time as I have no clean clothes left and Avery ran out of clean pj's....YAY! Today they have us scheduled for our PT, OT and Speech therapy so we'll have a very busy day. She has lost a little weight...down to 18 lbs, but she is eating much better now. They told us she could eat as many calories as we could get into her. So she's been eating the heck out of grilled cheese, sweet potatoes with brown sugar & butter, pound cake, fruit loops, pop tarts, and loaded mashed potatoes. I am totally jealous.

The IA Benefit was on Saturday in Neola and they had an amazing turnout! So many people came out to support Avery and it was tremendous. Jeremy's Aunts, Uncles and cousins were quite the party throwers we hear! Thank you so much to everyone. It brought tears to our eyes to see the pictures and hear the stories from everyone. Please feel free to send us more pictures and stories either through the blog comments or through email. (avery.christiansen@gmail.com) We are so blessed to be part of such a great community. We love you all so much!

Jenn

TEAM AVERY

Ladies from BCSI in MN


























The Cooks

&

Miss Vivian














My Cousins Jayden and Gabe

Daddy went shopping at the Avery Outfitters store today! Believe it or not, they are located in Memphis. He got me a new hat...but it appears to be a little big! He says he'll hang onto it until I get big enough to wear it.

Dr's said today that they finally identified the type of infection I had in my line and it is the type that most kiddos have when they are teething....difference being that I don't have the white knights in my body right now to fight it off. Antibiotics will help me. I am also apparently dealing with a virus of some sort, kinda like a cold, only nothing they can do for this one. Good news is no pneumonia! I had a transfusion of platelets today because my counts dropped below the line. That seemed to perk me up. Mom says I am being crabby today, but she just doesn't get how much this teething thing stinks!

All in all, I am hanging in there. They let me eat whatever I want...which means today I had sweet potatoes with brown sugar, chocolate milk, mac & cheese, and chocolate cake! Well, I have a ton of fun to have in the next 2 hrs before I finally let Mommy and Daddy go to sleep so I better get started! Thanks to all for reading my note -- talk to you soon!

Avery Anne

CDEF- tummy troubles

We discovered today that Avery does indeed have a nasty case of what they call CDEF. Basically a bacteria that lives in everyone but can get really over populated in kids with low counts causing a long lasting bout of runny poo and tummy troubles. Poor Avery has this and of course the only medicine for it is incredibly bad tasting. After the 2nd attempt we were able to get it down, so hopefully that will help her (She puked up the first attempt). Bad thing is she has to have it 4 times a day for the next ten days -- not so sure that is going to work out well for us. In the mean time, we are in Isolation at the hospital which means anyone coming in or out wears a mask and gown. Rumor has it any adults that come down with this are in it for at least 2 weeks....and no one wants the runs for 2 weeks! Poor Kiddo!

Her platelets have also dropped to 45 thousand so we most likely will do a transfusion for these tomorrow. Due to low platelets, we aren't able to do her PT -- too risky in the event of a fall, for internal bleeding. She was able to do her speech and OT today though which was good.

They had a Valentine's Day Carnival at the hospital today for all the children, but because we are in isolation Avery couldn't go. The staff was so sweet and brought up valentine's day gift bags to all the kids too sick to attend. She got all kinds of little valentine's day goodies! Course her favorite toys at this point are a box that held thermometer covers, a puke bucket and an empty water bottle -- seriously?! It's amazing Fisher Price is still in business.

Jenn

A New Tooth!

We are still in the hospital and going through a few rounds of antibiotics. Avery seems to have gotten rid of her fever for the moment, although she still has some sort of stomach bug causing lots of dirty diapers. They did find that she has an infection in her boob tube (hickman line) and are treating her for that. They are waiting on cultures for everything else and they plan to redo the chest x-ray tomorrow am to check for pneumonia. The plan is for us to stay for a few days, especially since her counts are still at zero. She had an infusion for her hemoglobin last night as those numbers were low and that has helped in her oxygen levels, although that is still not where we need it to be.

On the up side -- she is finally getting a new tooth. She has made do with the two bottom chompers for the last 6 months and we thought she would never get the rest of her teeth. But finally today, we can feel the top left one coming in. We are so excited!! This will definitely make eating more fun for her! Since she hasn't had a big appetite (she literally had 4 bites of vanilla pudding, 3 bites of sweet potatoes and some fruit loops today - that's it) I am hoping this new fun will help her eat a little better. We'll see....


As if this wasn't fun enough, my night owl of a daughter is wide awake right now -- at 10:30 pm. This is pretty typical for her, most of you know she was not sleeping through the night yet. But Mommy could really use some sleep and she has no plans of letting that happen any time soon! The nurses give me looks...I swear she is the only kid on the floor still up and playing in her bed!



Jenn

In-Patient Again

It's Nikki again...I'm sure Jenn will update soon with more detail, but wanted to let you know that Avery spiked a fever last night just shy of 102 degrees and was readmitted around 10 pm. They are testing her for a bacterial infection and have already started antibiotics. She also received a blood transfusion and they did a chest x-ray to check her lungs.
This is about all I know at this point, but wanted to do an update so that you can all be praying that Avery feels better soon. This round of chemo has been pretty rough on her and she could really use our prayers!

Dropped Counts

Avery's counts dropped today. Expected, but still scary to us Newbies at this Cancer gig. At this point Avery's Nuetrophils are lower than 500 (200 actually) and that means her body has very little protection from an infection. The rules of the game is that we call any time her temp gets to 99.4 degrees, and from there the Dr will decide whether or not to admit her. Yesterday we hooked her up to a tag-a-long pump that was giving her IV fluids. She was a little dehydrated from the puking and pooing so we thought it best to hook her up. She is off them today, however still not drinking a whole lot, so we may have to hook her up again tomorrow.

She is progressing well in her therapies. She is able to hold her head up for a pretty good amount of time and is doing well with sitting up on her own, although only for short amounts of time and she isn't very stable. She is doing great in her Occupational Therapy as well. Has no problem picking up small items with her pincher fingers. This coming week they want to work on self feeding....course she wasn't great at that before this happened either so that might take a little more work. Speech is new for her altogether. She stares at Miss Angela when she puffs and ba's at her to teach her vowels. She starts moving her mouth though, which is a sign she is trying to make sounds. All in all, the ladies agree she is moving forward quickly and wanting to get back to her base line. Motivation is sometimes the hardest thing for patients, so she is doing great there!

Plan for tomorrow is more GCSF around noon and maybe some fluids. Then we'll watch the football game as a family. They are having a big party down in the dining room for the game, but with Avery's counts being so low it's not an option to be around so many people. Jeremy bought nacho ingredients and pizza and I have a feeling he will find a place to go pick up some wings from, so we should be set to watch it in the apt. Not sure who we'll root for since the Chiefs aren't there (never gonna happen) so no betting going on between the 2 of us.

We've heard the plans for the IA benefit are in full swing. We can't wait to see pictures and hear stories of all the fun. We are so excited, but at the same time so bummed we won't be there to see you all. We'll definitely be thinking of you -- feel free to send us pictures of the evening -- the rumor is it should be fantastic fun!

I suppose....NASCAR just started...better get going!
New Score Update: Jeremy - 3 Jenn - 4 -- I'm losing

Love,

Jenn & Jeremy

Christiansen Family Portrait

We just got our Team Avery gear and we are so excited! Thank you to all who purchased from her store and to those that plan to. We have gotten lots of compliments on them already!

Team Avery Gear

Thank you to those that have sent us pictures in your Team Avery Gear! I know there are many more of you who have ordered and we look forward to getting pictures of you!

Chance Mander...we love a little man not afraid to sport the pink!



Aaliyah Glenn...how cute is that headband?!?



Gidget...Lisa Davis' little puppy




Dan Sutton with Cy! (Cy is missing Mom, Dad and little sis, but Uncle Dan is really fun!)

Chemo Session Complete

Chemo sessions Day 8 & 9 are done! Yea! Avery seems to have handled them well. The Dr's seem content and plan to send us home at some point tomorrow afternoon. Avery is in great spirits and even got the chance to finger paint today. (Mostly mom and the poor volunteer, but we managed a picture too.) The next few days they will be monitoring her ANC (absolute neutrophil count)and we will have to go to the hospital everyday for a daily dose of her GCSF to help her neutrophils reproduce. We'll of course continue other things like her therapy, clinic appts and labs as well. The GCSF requires an IV hook up and takes about an hour or so. When her ANC drops below 500, Avery will be required to wear a mask and avoid all crowds -- lot of time at home with Mom and Dad! The biggest concern at that point is that her body is not able to fight off infection once her levels drop that far and therefor we need to avoid the risk. If for any reason we think she has an infection we immediately head to the hospital. Fever is considered important at 99.4 degrees...so the moment she hits that we go -- they told us to pack a bag, kind of like when you are pregnant and be ready to go at any moment.

Jeremy and I are anxious to get back to the Target House. At the hospital only one of us can sleep in the room with her and the other has to sleep in the parent room. Neither of these options are "cozy" so we are looking forward to sleeping in a real bed back at the Target House. We are now considered germaphobes...we wash our hands 50 million times a day, wipe down all surfaces with Clorox wipes daily, and throw a lot of things away unused, but open.

Avery has been working with PT/OT at sitting up. It's going well and she is slowly regainging control of her head. She is able to hold it up for a fairly decent amount of time now, but lacks control in her trunk. This causes a lot of wobbliness and coordination issues for her but she is determined to crawl so she keeps at it.

I think that's about it for today...looking up for us!

Jenn & Jeremy