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Friday, June 21, 2013

First Fish with my Daddy

Friday, June 7, 2013


Hit up the first "first Friday" of the season!  And my picture had 5 bids on it already!  I'm pretty proud of myself for sure.  I made a picture to sell in the show for the Giving Solo organization that raises funds for kids with major brain injuries to have a n Art program at the Rehab center of KC.  I loved it!

My First Gallery Showing...

I call it Blue

Tuesday, June 4, 2013


Totally gone would have been awesome...but no new areas to watch was a welcome relief today.  Avery's platelets went down to 64 by this am so we will recheck in the morning and possibly top her off before leaving tomorrow afternoon.  We will recheck again on Friday at home and most likely again next week if need be.  They are thinking virus for now but the chance of a secondary cancer is always out there...leukemia wouldn't be that far of a stretch at this point in the game.  Yeah I just said that.  Welcome to our world.  Crossing our fingers that her body is just rebuilding from a virus and that we will see some progress in the next few days.  

We are fairly content with stable, although I hate reading the MRI reports that repeat the words "possible leptomenigeal disease" in more than one area.  But we are crossing fingers, sending prayers and feigning lack of interest for the next 3 months until something changes.

My mommy radar was on high alert these last few weeks because Avery has been an absolute defiant little turd.  In my head a kid can not possibly be that big of a brat and not have intercranial pressure...turns out you can.  So on the plus side-no new tumors.  On the negative side- I may need that British nanny to come spend a week with us.  Who new 4 year olds could be so strong willed??  

Thank you for all your amazing prayers...


Monday, June 3, 2013

Unexpected Transfusion

Today was a long one...especially because 2 kids decided to get up at 2:00 am.  Not sure why that happened but boy it was fun.   We hit up the local children's hospital down here to get a few diagnostic tests done and we arrived go find out they told us the wrong time.  Great start to the day.  After a 4 man battle to cath a very strong willed 4 year old we moved over to St Jude to get blood draws.  Halfway through the day we got a call from our NP who informed us the Avery's platelets were at 13.  Uh. Major issue.  We redrew and got the same results so this evening we spent 3 hrs in the Med Room getting platelets.  Not exactly the day we had expected.  

On a good note,  Avery's eyes looked good and no new prescription was needed.  The Dr indicated we will most likely do surgery at some point but for now we are good.  Her bone density scan revealed that her body thinks she is about 2 1/2,  which is great because she is the size of a 2 1/2 year old.  In terms of age,  she comes in at the 3% mark.  But if you put her on the 2 1/2 year old scale she shows up at 50%.  That means that her body is on par with growth for the age it thinks it is.  If her bone density put her at 4 we may be a little more concerned with her lack of growth.  I'm pretty sure Chubbs will out weigh her in 3 months.  

Tomorrow we have early labs again before her MRI. Not sure if we will get results tomorrow afternoon or not.  We have appts on Wednesday as well and then we drive back to KC.  Thursday we managed to  get an appt to cath her again in KC so we can hopefully get some answers from our new Urologist.  

Keep the prayers coming...


Sunday, June 2, 2013

St Jude Trip Today

Well 3 months has come and gone more quickly than it ever has for us.  We are on our way to St Jude now and hoping to make it there by 9 pm tonight.  I of course forgot to make reservations at the Grizzly House so we may end up at the hotel instead...hopefully not as that makes the day more complicated.  So far so good on the drive.  Avery is content with her movie and some chocolate covered pretzels.  Emmett is contemplating another nap and has so far been pretty quiet.  

We have appointments tomorrow morning at Le Bonheur to get some diagnostics done on her inner plumbing.  Hoping to find out something about her issues with UTI's and constipation.  Her MRI is slated for Tuesday.  She will meet up with all the other drs in the next 3 days as well to make sure things are looking good.  

A big thanks to those that joined us yesterday for the KC Cancer Crawl.  We had. Great time while raising funds for a bunch of fabulous charities all working towards finding a cure.  Team Avery rocked!  

Kick those prayers into high new "spots" and shrinkage in all other areas which would mean radiation damage rather than tumors.  Someday they will have machines sophisticated enough to differentiate between tumor and damage...never mind- when they have that they will have a cure too.