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Sunday, August 25, 2013

MRI Results August 2013

I apologize for the delay in posts...been a crazy week like normal.  Avery ran the whole gamut of tests while in Memphis this week.  Hearing was stable,  teeth looked fine and vision was holding steady.  We'll continue to patch her eye to force the right one to focus more, but overall it has improved greatly this year in terms of straightening out.  No major concerns with her therapies.  Her speech therapist placed her in average to slightly below, but really I think the tests are outdated and environment plays to key a role in success.  I mean if someone showed you a picture of a calculator...  You'd probably call it a cell phone too.  And what 4 year old reads a newspaper?  Lord knows her parents don't.  It's called an IPad.  

We met with the urologist on Wednesday and he wants us to continue with the bladder spasm medicine.  The sucky part is that it constipates her so stinking bad!  We giver her daily Miralax doses but she still ends up backed up.  It's so sad to hear your 4 year old ask for an enema.  Then of course being constipated can cause UTI's,  which we haven't been able to shake for the last 2 months.  Forget potty training at this point.  She finally has a little more control over her bladder when on the spasm med, but then the constipation fueled with Miralax causes blowouts and accidents all over the place.  It's a roller coaster and it sucks.  

Her Lumbar Puncture came back clear.  No cancer cells present in her spinal fluid.  Her MRI came back about the same as before.  No new areas of concern but the spot from February could possibly be brighter and larger than before.  Does it represent tumor growth?  Who knows.  Given the location, the original tumor bed,  we tend to lead towards radiation damage.  It's the one spot that has had radiation twice.  But we will never know for sure...if it doubles in size at some point we will start to get worried.  For now,  we'll claim stable until we are told otherwise.  

Here's to another 3 months of pretend normal!

Avery has returned to rehab again this week.  She was so excited to see her therapists on Friday.  You'd have thought she was at Disney World!  We are currently looking for options for helping us get Avery to and from Rehab on Wednesday and Fridays.  She goes from 9-4 each day and for the last year Jeremy and I have missed a lot of work taking her and picking her up.  If you know of anyone looking for a little side job, please send them our way!  There is unfortunately no programs for pediatrics like this in our area so we have to take her downtown,  a short drive from our house but we both work 20 mins south of our house so the drive back takes much longer.  If you know of anyone that would like to spend time with my willed 4 year old, please have them email me at

A big thanks to Nana for coming to KC for the week to hang out with Chubbs.  He would have been miserable locked in a stroller all week at St Jude.  Nana time was way more fun!!

September is Childhood Cancer Awareness Month.  Gold is the color - so you'll definitely see that soon.  Please wait to share the pink until October -  kids need your support too.  And I just ordered some stickers and ribbon car magnets, let me know if you'd like one!!


Monday, August 19, 2013

So far so good...

Teeth looked good, although they need a cleaning.  Hearing looked the same.  No decrease in ability.  Speech measured just a touch below average on 2 areas and average on the other.  Need to work on plurals, course when you can't hear the S on the end of the words that can make plurals a little hard to catch onto.  

Next up is vision.  Expecting stable there as well since her eyes looked great in June and patching seemed to be helping her wandering right eye.   Tomorrow she has her MRI and LP in the am.  Results will most likely be Wednesday.  

Today was a good day for us.  

Tuesday, August 6, 2013

Countdown to St Jude

It's hard to believe but our next trip to St Jude is coming up again.  Nana is coming down to stay with Emmett since 11 months old is not the age to lock a kid into a stroller for 3 days.  Hard to believe that Avery was this age when this whole nightmare of a journey began 3.5 years ago.   My how fast his first year has flown by compared to hers.  I remember sitting in agony waiting for her to hit her next milestone...with Emmett we turn around and think holy crap!  He's doing that already???

What a different path we are on now.