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Sunday, February 24, 2013

MRI and LP Results

Sorry for the delay in posting...the weather proved much more eventful this week then we had anticipated and it kept both Jeremy and I busy.  Kansas City is such a mess when it snows!  This MN girl is not used to the fact that plows aren't out 24/7 and it was a complete shock to me that our street wasn't plowed until Friday evening. 

Avery's visit to St Jude was good.  We met with all the usual Dr's and therapists.  Her Eyes haven't changed and have actually done well with the patching.  This is great for us becuase the last visit resulted in us putting surgery on the table to correct the right eye from drifting.  While its not "off the table" it certainly isn't heading down that path which is a relief.  Speech was impressed with her progress and vocaublary and we have decided the turd knows way more than she lets on.  She is smaller than a typical 4 year old, sitting at the 3% mark for height and 9% mark for weight.  We are hoping her Growth Hormone kicks in but if not, we will start looking at options for helping her body grow. 

Counts were great -- everything is finally in the NORMAL range -- something we haven't seen for over 3 years.  Amazing how something so simple can be so significant to us.  Her ANC was 3300!  We had her MRI late Monday morning and they had a hard time getting the LP so we had to sedate her again on Tuesday and get the LP done again.  Tuesday afternoon we met with Dr Armstrong to discuss the results of the MRI.  They were a little confusing and we are not sure of how we feel exactly about them.  The Dr wanted to show us the scans prior to us reading the radiologist report because he and the Radiation Oncologist disagree with the report on the conclusion.  There are still the same spots present as before -- all the same in size, so stable.  There is one spot, located in the original tumor bed that appears on the Spine MRI to be larger than the last scan in November.  When you look at this same spot on the MRI of the brain, the spot appears to be the same size.  What does that mean?  Well, as a radiologist would report, and did, it appears as if she has tumor progression in that area.  However, given Avery's history, the Dr's aren't 100% convinced.  Avery recieved proton beam radiation to this spot 6 months into treatment.  She also then received it again last year when we did the full Spinal - Cranial Radiation.  Overall, this particular area has had over 90 grey of radiation -- the max.  It stands to reason that of all the places for recurrence, this is possibly the least likely.  HOWEVER, cancer is an ugly and unconforming type of beast and by no means is this out of the question, a possibilty.   The extra good news is that the LP came back as we were discussing this with our Neuro Oncologist and it was negative -- VERY VERY GOOD.  A positive result would help confirm what the MRI is showing the Radiologist.

On Wednesday we went and met with an offsite referral Urologist in Memphis.  The first thing he said to us was that over the years he has figured out that St Jude kids are a breed all their own.  That was music to my ears.  We've had some trouble with the local Urologist treating Avery like a typical kid.  Seems to be hard to impress upon him that the butt load of chemo and radiation my kid has had can have a significant impact on every function in her body --- including her pee pee.  When we return in May he has ordered us to repeat the reflux diagnostic test and also a new test to look at what the radiation to her spine could have done to her bladder area.  We are very excited to be working with him.

Bottom line is we have been granted another 3 months of "pretend normal" because TIME is the only thing that will tell us what is really going on.  And for now, that's what we'll take.  Living life 3 months at a time is not something I would recommend to anyone, but given the alternative, we slap a smile on our faces, give thanks to God for what we have and savor each hug, each kiss, each giggle,  and yes, even each temper tantrum. 

My 5 1/2 month old weighs in at 19 lbs.  When avery was 14 months old we were struggling to keep her above 17 lbs.  I'm not sure what to do with this chubby, happy, drooly boy -- what a difference!

Thank you for all the prayers! 


Saturday, February 16, 2013

St Jude 1 year post Radiation Scans

It's been almost a year since Avery completed radiation.  Tomorrow we leave for our one year post radiation MRI.  To say we are scared is a gross underestimation of how we actually feel.  For 3 months we have been fully aware that absolutely no treatment has been going on inside her body waging war against this monster.  This week we'll see if what we chose last winter was right.

We'll post as soon as we have results...check FB for quicker updates.  Prayer Warriors we need a lot of overtime right now...the children's cancer battlefront has seen a lot of Angels these last few months.


Thursday, February 7, 2013

Still running a fever...

Avery seems to be having trouble kicking this fever.  Sundays trip to the ER resulted in a negative UTI culture and flu test.  They decided it was something viral and to let it run its course.  So Monday we kept her home and she seemed ok all day.  Tuesday we took her to school and they called us around 2 and said she was running a temp.  Wednesday we stayed home again and she seemed ok all day.  Last night however, she spiked a temp again and she stayed home with Daddy today.  She spiked again this evening and then Emmett jumped into the mix and started running a temp as well. What a strange cycle.  Other than fever, they appear to just have a bad cold.  Runny nose, congestion and a cough.  Into the pediatrician we go again tomorrow to see what she thinks.  We are definitely ready for spring!

Sunday, February 3, 2013

ER again....

Well....the port is out but we decided to take her anyway.  I swear this kid saves all her issues for 9 pm at night.  We are once again at CMH ER waiting for the Dr to come in and check us out.  She started running a fever earlier today and it spiked rather quickly tonight.  The shakes started and her stomach hurt and after a couple of calls with the CMH nurse on call we decided we weren't comfortable not going in.  So much for normal.

The last time she was like this we ended up septic and in the PICU.  Needless to say we weren't taking any chances.  So here we sit on a Sunday's 11pm and I just schooled the ER Dr who just fell out of med school and normally works with adults.  Freaking fantastic.  Just what I need.  Oh wait he just sent the Attending in...and he suggested all the things I did.   Hmmmm....I so don't get paid enough to do their jobs for them....