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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 http://events.r20.constantcontact.com/register/event?oeidk=a07e908h95i78929301&llr=tpfao8oab&showPage=true.  

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: http://give.childrensmercy.org/site/Calendar/1390169748?view=Detail&id=101064

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 http://www.dottodotrun.org/index.html

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. 

Jenn

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. 

Jenn