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Monday, January 30, 2012

Arrived in Memphis

Yesterday we drove down and took the scenic route through rural Missouri and Arkansas.  I had no idea Arkansas was so hilly!  We made it into town about 6 pm and took Avery over to the Med Room for labs and check up with the dr's.  This morning we got up early and were in diagnostics by 7:30 am for her MRI.  St Jude tends to be protective over their info and wanted to do their own scans as well.  Tomorrow we have appts with the Dr's again and Therapy.  Wednesday we will meet with the radiation oncologist and do the simulation testing for the planning phase.  As far as the rest of the week - well we really don't know as of yet.

Avery seems to be in good spirits and all her drs and the nurses have been very excited to see her.  They all say the same thing most of you say, "look how tall she is!"  To which we respond...nope -- same height as last spring.  I swear the kid needs to grow just so we can say "I KNOW!" instead. For now we are staying at the Grizzly House but we assume they will be moving us to Ronald Mc Donald or Target House by the end of the week. 

Jeremy and I are doing fine.  The next few weeks will be tough as we won't be together but we'll get through it -- not the first time, but hopefully its the last.


Thursday, January 26, 2012


After talking with our team today at Children's Mercy and St Jude we have decided to move forward with Radiation now.  We have had great - better than expected results with this particular clinical trial and we'd hate to lose that by pushing forward with another 2 rounds of chemo only to find the disease has found its way around the chemo.  Taking that risk into consideration we have decided now is the time.  Hit it while its down - so to say.  

This means that early Sunday morning we will once again pack our bags for that 9 hour drive to our home away from home.  Her appts start on Sunday afternoon and are so far scheduled through Wednesday but our guess is that many more will be added for the rest of the week and we will find ourselves running like normal.  Although it hasn't been confirmed, we are assuming we will start radiation on Monday the 6th.  The plan is for 4 weeks of all over spinal/cranial radiation, followed by 2 weeks of boost radiation to the specific tumors and the original tumor bed.  Once we had our appts with the radiation team in Memphis, we will update more specifically. 

Once again we find ourselves split up from each other...but something we will gladly do if it gives us the results we are so desperate for.  Avery is strong.  She is a fighter.  And we will give it our all to get rid of this damn mother effer of a disease. 


Monday, January 23, 2012

Happy 3rd Birthday Baby!

Avery's Birthday Party was a hit!  I think she was feeling a little under the weather so she spent a majority of the party in the Little Tykes Coupe with Grandpa's keys - but hey she had a good time.  The rest of the kids seemed to have had a great time.  She was overwhelmed by all the gifts so of course she went "running" with nana while I finished opening them up.  Thank you to all of you for such wonderful gifts.  She spent the rest of the weekend exploring them and has gotten very protective over them!

Friday, January 20, 2012

Scans were Stable

It looks like we got the birthday present we were hoping for! Avery's scans showed no progression of tumor growth nor any new lesions. This is fantastic and a huge relief for the moment. We aren't exactly sure what that means for us but after we talk to the drs next week we'll have a better idea of what is next. We are at a point in this journey where the drs are guessing and the decisions are not easy to make. The pressure to choose correctly is unwavering, followed by the immediate anxiety that we chose right. It's not a ride I recommend to anyone. But in the same breath I thank god for the chance to choose again...

Avery's MRI went smoothly....her LP was a little tough. Unfortunately being NPO before an LP doesn't help with fluid in your spine. The dr had to stick her quite a few times before she got any spinal fluid to come out. As a result, she has a sore back now. She milked us for the rest of the afternoon and managed to finagle 2 cake pops and a bag of cool ranch Doritos out of us because of it. Her shunt reprogramming went great and we love the new NP from neuro surgery.

Tomorrow we celebrate my hero's birthday. It's been 3 years already....3 birthdays with this fight...but three we wouldn't trade for anything. If we can take only one thing away from this whole situation we'll take this: PERSPECTIVE. Everything looks just a little better when you get some perspective on it. Think yesterday sucked? It could have been way worse....and for someone else it was...I think about that every time my mind wanders to that place...and it goes there a lot. But tomorrow I'm going to adjust my perspective...because I get to spend the day celebrating my hero's special day.



Avery's MRI is done. We are waiting for the Dr to finish up the LP. Once she wakes up we will get her shunt reprogrammed and go find some food. The plan is to meet with our team at 3 pm today for results. We'll post once we've had time to digest. Kepp em crossed...


Monday, January 16, 2012

Scanxiety Week

It's hard to believe that its been 2 months already but it has.  Her MRI is scheduled for 7 am on Friday.  We hope to have results by sometime in the afternoon.  Again, results will be shared with our Neuro Oncology team at St Jude before any decisions are made so it will most likely be Tuesday before we post anything. 

It's crazy but on Saturday Avery will be turning "twee".  We have a big party planned at a bounce house place here in Shawnee and we plan to bounce the toddlers into oblivion...or at least into a really good nap for Saturday afternoon.  Mickey Mouse is the theme for the party and it was a decision made entirely by her.  I really thought she'd want a Rapunzel party or at least Strawberry Shortcake party but she opted for Mickey Mouse instead.  It's hard to believe that it's been a year since we celebrated our Hero turning 2.  She's come so far in the last 12 months...talking, standing better, communicating so well and trying so hard to be the terrible 2 yr old that we want her to be...

Turning 2 - Super Hero Party

This week, just shy of 3
We'll get some pictures out of the party this weekend.  And we'll get word out of the scans as quickly as we can.  Please pray for us this week as we once again are faced with these difficult decisions.  Please pray that God leads us through this time and gives us courage and strength to find the right path to continue on in this journey.  Please pray for all of our cancer family friends that are facing this same situation here in the next few weeks and are looking for the same positive outcome that we are with scans.  Most importantly, kiss those kids twice matter how crazy they drove you today. 


Sunday, January 1, 2012

Happy New Year!

It's hard to believe that we've finally left 2011 and are moving into 2012.  For most, the new year offers hope for an improvement, a change, an adventure.  For us it offers only the very real possibilty of a terrible year.  It's hard not to see it that way, standing where we are.  We are hopeful that we will continue to make good decisions in the new year and that they will yield the amazing results we are so desperately seeking.  But we are realistic that this year could prove to be even worse than 2011.  So for now, we step gingerly into the new year - not wanting to make too many waves for fear that someone might notice and we move forward with the unknown.

Thank you to you all that have supported us  - emotionally, spiritually and financially.  Each is so very important to the survival of this family and it is a debt we will never be able to pay back.  For all your generousity in 2010, 2011 and for the yet to come....we thank you from the bottom of our butts....they are much bigger. : )