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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  

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.