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Saturday, December 20, 2014

Disney 2014 Christmas

3 years ago in October we were told Avery had relaspsed again, this time with visible tumors and leptomenigial spread.  Devestated once again we had to make hard decisions to spend quality time with her or to put the gloves back on and keep fighting.  We have never regretted choosing option 2 even though it has come at a high cost for Avery.  Her deficits and delays will plague her daily for the rest of her life.   But yet here she is  - 3 years later - stronger than ever.

When Avery relapsed we asked to have Avery's Make A Wish moved up as we prepared for the worst.  We headed off to Disney World for Halloween, just weeks after hearing the crappy news.   We  even had a huge party of friends that were willing to go with us.  It was amzing.   When we returned we battled hard for 8 more months and finally seemed to kick this beast down.  It has been 2.5 years since her last radiation treatment.  We have had 2.5 years of what they refer to as "stable" scans.  There is a lot guessing and crossing of fingers that spots are nothing and can be chalked up to "treatment schmutzt."  This last visit to St Jude however, gave us a little different report.  This time we were told that they found a hemoragic bleed in her brainstem.  This is common for kids that have had as much radiation as she has.  Unfortunately, her bleed is in her brain stem - a place that is not forgiving for extra fluid.  As a result, we have been watching closely for changes neurologically.  Stroke, weakness, paralysis, siezures and of course death.

Hearing this kicked our "someday"  into gear and we decided it was time to take her back to Disney World - a place she's been begging to go since we were last there.  To say she has fun is an understatement.  Her and Emmett squealed, oooed and ahhed all week long.  She giggled and ran around with her brothers and the Scahub boys, while Nana and GJ chased them around the many parks of Disney.  No one was lost and the meltdowns were few and the Christiansen's have had a very  Merry Christmas already.  Thank you to Nana, GJ and Jeremy for pushing this to happen now -- my preference to plan would have not allowed for an impromptu trip like this - with memories that will last forever.  And just a small reminder to all - don't put off till tomorrow what you can do today.  Tomorrow is promised to no one.  Cancer Fighter or not.


Wednesday, October 22, 2014

Pumpkin Patch 2014

Still a minny thing, with a brother that is quickly catching up!  She loves the pumpkin patch and even stood up alone to show us her pick.  Great time had by all!  Can't believe we are almost to Halloween!


Saturday, September 27, 2014

Sorry for the delay in posting Avery's MRI results.  It's always a game of catch up when we get back home and we didn't get the final results of the LP until we were on our way back to KC.  It was great to be back at St. Jude.  We all felt a since of relief when we walked in the door.  The good news is that the MRI showed no tumor growth and her LP was clear so her scans were stable!!!  The bad news is she has developed a small hemorrhagic bleed.  This radiation damage is very common, however Avery's is in her brain stem and that makes it a little tricky.  Her risk for stroke, seizures, and paralysis have now gone up and we will need to keep a close eye on her behavior and look for those signs.  There is not a lot that they do for these when they are small and if it does get larger surgery still might not be an option because of it's location.  Avery's Dr. was concerned but stressed that if it stayed small that it shouldn't be a big issue.  So it's a wait and see approach for now.  We will go back in 4 months to do another MRI and discuss any further action if needed.  Please pray that this resolves itself and Avery continues to have stable scans.  Thanks again for you continued support. 

Sunday, September 7, 2014

Almost 4 weeks into Kindergarten & 2 Weeks until our St Jude Trip

The last few weeks have been a whirlwind as Jeremy and started to figure out the new arena known as elementary school.  The teachers and aides are getting accustomed to Avery and her behavior and we are working on options for helping her get through the day.   She struggles with her energy level (thanks radiation) because there is no nap time in Kindergarten, so by the end of the day she pretty beat and not cooperative.  The school has instigated a sticker chart to help her stay motivated.  She struggles with writing and with group time the most.  We have discovered that in preschool she may have been allowed to wander during activities and group time, rather than participate.  That is a behavior we are working to change.  We have also discovered that she is quite the perfectionist and as such doesn't enjoy doing her writing because she hasn't figure out slanted lines.  We knew she has some OCD tendencies  but hadn't yet displayed the perfectionist card.  Only fitting I suppose, given who her mother is.  She loves school so far, although I think her favorite part is Lunch and Library.  I have been chosen as room mother so I am hoping to get some extra time to see her in her new environment.

In 2 weeks we leave again for St Jude. Its been a ridiculously long time since we were last there - 5 months - and we are nervous for this trip.  Luckily Avery has been acting like her normal self so there is no symptoms causing us to worry.  She has had a pretty quiet summer in terms of her health which we are so grateful for.  She did however develop a UTI this weekend but its been months since we have had one of those. 

September is Childhood Cancer Awareness Month.  I know for many, its the start of the Breast Cancer season, but we ask that everyone hold off on the pink and hang onto Yellow for a few more weeks as we try desperately to bring awareness for our kids.  This month has a lot to offer for our kids and we are excited to participate in them.  The Hope Gala is on September 27th in Overland Park and is an event put on by Braden's Hope - an organization devoted to giving grants to Dr's across the country working trials that may help kids like Avery avoid the awful "adult" treatments that have wreaked havoc on her body and will forever plague her with deficits.  This year's recipients include Avery's very own Oncologist at Children's Mercy.  To read more go to  

Children's Mercy is also hosting the KCares for Kids Walk at the Sporting KC Complex on 09/27.  This event raises funds for Cancer Research at Children's Mercy.  Events start at 8:30 am - family friendly fun, followed by a 1 mile walk at 10 am.  More information can be found here:

We will also be participating in the Paulina Cooper Dot to Dot Annual 5K walk & run/10K run on 09/20.  Avery will be the featured child for the race this year and will be introduced before the start of the race.  This run honors Paulina, a local Kansas City girl who lost her fight with a brain tumor in 2004.  To learn more, check out the site at

Across the nation, families are doing all the can to bring awareness to this month for our children.  Many bridges, buildings and structures are being lighted gold in honor of this fight.  We proudly support the gold awareness and will answer any questions anyone might have.  When October 1st hits - we will switch gears to support the Ta Tas with the rest of the world, but for just 3 more weeks we ask that you all join us in supporting the Gold for our kids....for the future Ta Tas that someday I dream Avery will have. 

We appreciate everyone's continued support.  For us the battle field is much quieter now, but we know all too well how quickly that can change. 


Thursday, August 14, 2014

Milestone Achieved - Kindergarten Day 1

Well we have hit another milestone here at Team Avery -- we now have our very own Kindergartner!    Avery started kindergarten this morning and couldn't wait to get there.  She was so excited.  Course the nurse has already called me to let me know she hit her head on the playground and her tummy is hurting.  Awesome - it's only been an hour and half.  The first day is always the hardest they say - so hopefully tomorrow will prove better.  (especially after an enema!)

She has Mrs Talb and their are 20 kids in her class.  Mrs Talb is a very orderly and specific teacher and rumor has it she is a great one.  She has been teaching for a long time and I look forward to a few weeks from now when she has Avery figured out and we can get down to business on the learning.  I have high hopes that Avery will make some new friends this year - ones we can have play dates with.  I yearn to hear those girly giggles floating out from her bedroom as she pretends with her new best friends. 

This will be the start of a new phase for me as well -- dealing with the School and Avery's IEP is something that most parents do not find an easy task.  My goal is to play nice as best I can  -- or this could be a long 12 years...  I have not yet met with this school's team as we transferred in from our assigned school and they don't approve that move until a few days before school starts.  Hoping to meet with them next week to fill them in on Avery and her baggage.  I keyed the nurse in today about her "Master Adult Manipulator" skills -- hoping that helps a little today. 

Our next visit to St Jude is at the end of September -- a longer wait than normal due to scheduling.  Crossing our fingers that waiting 5 months hasn't left anything unchecked. 


Friday, July 11, 2014

Fantastic 4th of July

It's crazy to think that we are halfway through July and almost done with summer.  Avery is slated to start kindergarten on August 14th -- which is only a month from now.  Her backpack and lunch box came the other day and I was at Target this week as the school supply displays were being set up.  I can't believe how fast summer has flown.

Avery is working hard on standing and walking and gets more daring each day in her attempts to maneuver around.  We are still trying to gain as much independence as we can before the start of school.  She has an IEP lined out that includes daily special ed time, weekly therapy times and assistance from a para.  We are of course nervous for this new step.  She is not yet in control of her bladder thanks to that damn radiation, which means she will be dealing with pull ups and wiping and potty breaks outside of the classroom.  Right now she has a bathroom in the classroom and the teachers assist her if she needs it.  This makes me really nervous especially because she is so OCD about any spills on herself.  We change our clothes daily because we have a drop of water on our shirt.  Control what you can - right?

Our holiday weekend was spent in Iowa visiting the big family clan and hanging out at the pond.  The kids loved the fireworks and were enthralled both nights when they got to see them.  Lots of candy, sweets, late nights and no sleep.  It was great to see all of our cousins and spend time with them. 

Scans have been set for Sept 23rd.  Late I know but the 4 month appt was not fitting well with our family vacation to MN and the start of school so we pushed it back a bit.  Makes us nervous, but no signs of any issues as of yet.  The appointments will resume the 4 month cycle again after that because I don't need any additional stress and this extra 2 months will most likely freak me out more than any other wait.  We have never waited this long between scans. 4 years of at least every 3 months....well it has us on edge for sure.  

We have ordered more koozies for anyone that is looking to get some.  They are $2 a piece and I will have them by Friday.  Just let me know so I can hold some for you.  I also have bracelets and keychains in case anyone is in need of a new one.  I know my keychain was a little yucky at this point -- 3 years I suppose is about the max on keeping that thing usable. 


Monday, June 9, 2014

Day 1 A success!

So far we haven't talk to her because she is way too busy to call us.  Apparently she is having way too much fun I guess.  She received mail today and made out like a bandit thanks to the MN crew -- she was so excited to receive her own mail!  We are patiently waiting for her to call us tonight, trying hard not call her first.  Her companion sent us some pictures today so we have gotten a small glimpse into her day but we can't wait to talk to her.   Man is this what it feels like when they go to college???


Sunday, June 8, 2014

Frozen Cabin

The companions created a Frozen cabin for the girls in Avery's cabin.  They were so excited!

Camp Quality - Big Kid Camp

Today we watched as our not so little girl climbed aboard a school bus for the first time and eagerly waved us goodbye.  Summer Camp - Big Kid Camp - Cancer Camp.  We were lucky to have found out about this amazing organization that puts on a week long camp for kids 5-18 that have all been forced in the awful world of cancer treatments and deficits.  Here for a week, these kids get to be just like everyone else  - games, horseback riding, fishing and swimming.  They have it all, and they all get to do it regardless of wheel chairs and walkers, hearing aides and meds.  To say she was excited is an understatement.

Each camper is assigned a Companion who is with them the whole week  - here Avery is with Miss Melanie.  Bonus for us, Melanie just happens to be the daughter of a friend of mine from work - so we feel 10 times better knowing she is with her.  Each kid was also given a game jersey (or dress in her case) and the theme this week is "Game On."  The camp is located in St Joe and they have a CMH Oncology Dr onsite all week, as well as 4 nurses.  The ratio is like 3:1 so each of the kids will be well taken care of.  Melanie has an IPhone so we have plans to Facetime later tonight to see how things are going.

Right now we are looking at a whole week of Emmett time and he is also very excited.  No one taking his toys or telling him no all the time -- he's ecstatic as well!  We'll post more photos as soon as we get some from Miss Melanie.


Tuesday, March 25, 2014

Stable Scans March 2014

2 years ago about this time, we finished our last radiation treatment and crossed our fingers...

Today we heard the fantastic news that her scans are still stable!  No new changes and they still don't know what the spots are in there but for now they are quiet and we'll take it for what it is.  We tested her growth hormones because my bossy 5 year old hasn't grown since radiation.  She now hovers in the height and weight bracket of a 2-3 yr old...and Emmett is gaining on her fast!  We meet with her endocrine team shortly to see what the test results say.  My guess is we will start shots in the coming weeks.  


Monday, January 27, 2014